tag:theconversation.com,2011:/ca/topics/autism-533/articlesAutism – The Conversation2024-03-27T01:24:33Ztag:theconversation.com,2011:article/2251802024-03-27T01:24:33Z2024-03-27T01:24:33Z‘Noisy’ autistic brains seem better at certain tasks. Here’s why neuroaffirmative research matters<figure><img src="https://images.theconversation.com/files/582749/original/file-20240319-24-qstvmi.jpg?ixlib=rb-1.1.0&rect=135%2C81%2C5781%2C3854&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/brain-wave-on-electroencephalogram-eeg-epilepsy-562046677">Shutterstock</a></span></figcaption></figure><p>Autism is a <a href="https://www.cell.com/trends/neurosciences/fulltext/S0166-2236(22)00166-7?fbclid=IwAR2plqjNc7PoPCl7S0xzWpK_dCLfzaov9rl7u5wBdt8DaOc6lNrCekYp1RY">neurodevelopmental difference</a> associated with specific experiences and characteristics. </p>
<p>For decades, autism research has focused on behavioural, cognitive, social and communication difficulties. These studies highlighted how autistic people face issues with everyday tasks that allistic (meaning non-autistic) people do not. Some difficulties may include recognising emotions or social cues. </p>
<p>But some research, including our own study, has explored specific advantages in autism. Studies have shown that in some cognitive tasks, autistic people <a href="https://academic.oup.com/brain/article/128/10/2430/274623?login=false">perform better</a> than allistic people. Autistic people may have greater success in identifying a simple shape <a href="https://pubmed.ncbi.nlm.nih.gov/15985068/">embedded within a more complex design</a>, arranging blocks of <a href="https://acamh.onlinelibrary.wiley.com/doi/abs/10.1111/j.1469-7610.1993.tb02095.x">different shapes and colours</a>, or <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3976471/">spotting an object within a cluttered visual environment</a> (similar to Where’s Wally?). Such enhanced performance has been recorded in <a href="https://www.sciencedirect.com/science/article/pii/S0960982215005552">babies as young as nine months</a> who show emerging signs of autism. </p>
<p>How and why do autistic individuals do so well on these tasks? The answer may be surprising: more “neural noise”.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/from-deficits-to-a-spectrum-thinking-around-autism-has-changed-now-there-are-calls-for-a-profound-autism-diagnosis-194049">From deficits to a spectrum, thinking around autism has changed. Now there are calls for a 'profound autism' diagnosis</a>
</strong>
</em>
</p>
<hr>
<h2>What is neural noise?</h2>
<p>Generally, when you think of noise, you probably think of auditory noise, the ups and downs in the amplitude of sound frequencies we hear. </p>
<p>A similar thing happens in the brain with random fluctuations in neural activity. This is called neural noise. </p>
<p>This noise is always present, and comes on top of any brain activity caused by things we see, hear, smell and touch. This means that in the brain, an identical stimulus that is presented multiple times won’t cause exactly the same activity. Sometimes the brain is more active, sometimes less. In fact, even the response to a single stimulus or event will fluctuate continuously.</p>
<h2>Neural noise in autism</h2>
<p>There are many <a href="https://www.nature.com/articles/nrn2258">sources of neural noise</a> in the brain. These include how the neurons become excited and calm again, changes in attention and arousal levels, and biochemical processes at the cellular level, among others. An allistic brain has mechanisms to <a href="https://www.nature.com/articles/nrn3061">manage and use this noise</a>. For instance, cells in the hippocampus (the brain’s memory system) can make use of neural noise to enhance memory encoding and recall.</p>
<p>Evidence for high neural noise in autism can be seen in <a href="https://www.frontiersin.org/journals/psychology/articles/10.3389/fpsyg.2011.00051/full">electroencephalography (EEG) recordings</a>, where increased levels of neural fluctuations were observed in autistic children. This means their neural activity is less predictable, showing a wider range of activity (higher ups and downs) in response to the same stimulus. </p>
<p>In simple terms, if we imagine the EEG responses like a sound wave, we would expect to see small ups and downs (amplitude) in allistic brains each time they encounter a stimulus. But autistic brains seem to show bigger ups and downs, demonstrating greater amplitude of neural noise. </p>
<p>Many studies have linked this noisy autistic brain <a href="https://www.cell.com/trends/cognitive-sciences/abstract/S1364-6613(15)00091-1?rss=yes&mobileUi=0">with cognitive, social and behavioural difficulties</a>. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/most-adults-with-autism-can-recognise-facial-emotions-almost-as-well-as-those-without-the-condition-187995">Most adults with autism can recognise facial emotions, almost as well as those without the condition</a>
</strong>
</em>
</p>
<hr>
<h2>But could noise be a bonus?</h2>
<p>The <a href="https://www.cell.com/trends/neurosciences/fulltext/S0166-2236(22)00166-7?_returnURL=https%3A%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS0166223622001667%3Fshowall%3Dtrue">diagnosis of autism has a long clinical history</a>. A shift from the medical to a more social model has also seen advocacy for it to be reframed as a difference, rather than a disorder or deficit. This change has also entered autism research. Neuroaffirming research can examine the uniqueness and strengths of neurodivergence. </p>
<p>Psychology and perception researcher <a href="https://www.sciencedirect.com/science/article/pii/S0042698909003563?via%3Dihub">David Simmons and colleagues</a> at the University of Glasgow were the first to suggest that while high neural noise is generally a disadvantage in autism, it can sometimes provide benefits due to a phenomenon called <a href="https://www.sciencedirect.com/science/article/abs/pii/S1388245703003304?via%3Dihub">stochastic resonance</a>. This is where optimal amounts of noise can <a href="https://theconversation.com/like-to-work-with-background-noise-it-could-be-boosting-your-performance-119598">enhance performance</a>. In line with this theory, high neural noise in the autistic brain might enhance performance for some cognitive tasks.</p>
<p>Our 2023 research <a href="https://www.frontiersin.org/journals/neuroscience/articles/10.3389/fnins.2023.1110714/full?utm_source=F-NTF&utm_medium=EMLX&utm_campaign=PRD_FEOPS_20170000_ARTICLE">explores this idea</a>. We recruited participants from the general population and investigated their performance on letter-detection tasks. At the same time, we measured their level of autistic traits. </p>
<p>We performed two letter-detection experiments (one in a lab and one online) where participants had to identify a letter when displayed among background visual static of various intensities. </p>
<p>By using the static, we added additional visual noise to the neural noise already present in our participants’ brains. We hypothesised the visual noise would push participants with low internal brain noise (or low autistic traits) to perform better (as suggested by <a href="https://www.sciencedirect.com/science/article/abs/pii/S030101041000193X">previous research</a> on stochastic resonance). The more interesting prediction was that noise would not help individuals who already had a lot of brain noise (that is, those with high autistic traits), because their own neural noise already ensured optimal performance.</p>
<p>Indeed, one of our experiments showed people with high neural noise (high autistic traits) did not benefit from additional noise. Moreover, they showed superior performance (greater accuracy) relative to people with low neural noise when the added visual static was low. This suggests their own neural noise already caused a natural stochastic resonance effect, resulting in better performance. </p>
<p>It is important to note we did not include clinically diagnosed autistic participants, but overall, we showed the theory of enhanced performance due to stochastic resonance in autism has merits. </p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1652857377383919617"}"></div></p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/autism-is-still-underdiagnosed-in-girls-and-women-that-can-compound-the-challenges-they-face-176036">Autism is still underdiagnosed in girls and women. That can compound the challenges they face</a>
</strong>
</em>
</p>
<hr>
<h2>Why this is important?</h2>
<p>Autistic people face ignorance, prejudice and discrimination that can <a href="https://www.liebertpub.com/doi/abs/10.1089/aut.2021.0005">harm wellbeing</a>. Poor mental and physical health, reduced social connections and <a href="https://theconversation.com/what-are-masking-and-camouflaging-in-the-context-of-autism-and-adhd-193446">increased “camouflaging” of autistic traits</a> are some of the negative impacts that autistic people face.</p>
<p>So, research underlining and investigating the strengths inherent in autism can help reduce stigma, allow autistic people to be themselves and acknowledge autistic people do not require “fixing”. </p>
<p>The autistic brain is different. It comes with limitations, but it also has its strengths.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1621908349942906881"}"></div></p><img src="https://counter.theconversation.com/content/225180/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Jeroen van Boxtel receives funding from Australian Government through an Australian Research Council Discovery Project (project number DP220100406), the ACT government.</span></em></p><p class="fine-print"><em><span>Jovana Acevska and Pratik Raul do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>‘Neural noise’ isn’t the sounds you hear, but rather the variability of responses in your brain. Autistic people are thought to have greater variance that can be a disadvantage or a strength.Pratik Raul, PhD candidiate, University of CanberraJeroen van Boxtel, Associate professor, University of CanberraJovana Acevska, Honours Graduate Student, University of CanberraLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2236432024-03-22T00:14:57Z2024-03-22T00:14:57ZWhat’s the difference between autism and Asperger’s disorder?<figure><img src="https://images.theconversation.com/files/581137/original/file-20240312-16-5zslsi.jpg?ixlib=rb-1.1.0&rect=25%2C352%2C5566%2C3194&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/young-woman-headphones-relaxing-home-late-704548654">Stokkete/Shutterstock</a></span></figcaption></figure><p>Swedish climate activist Greta Thunberg describes herself as having <a href="https://www.theguardian.com/environment/2019/sep/02/greta-thunberg-responds-to-aspergers-critics-its-a-superpower">Asperger’s</a> while others on the autism spectrum, such as Australian comedian Hannah Gatsby, <a href="https://www.theguardian.com/stage/2022/mar/19/hannah-gadsby-autism-diagnosis-little-out-of-whack">describe</a> themselves as “autistic”. But what’s the difference?</p>
<p>Today, the previous diagnoses of “Asperger’s disorder” and “autistic disorder” both fall within the diagnosis of autism spectrum disorder, or ASD. </p>
<p>Autism describes a “neurotype” – a person’s thinking and information-processing style. Autism is one of the forms of diversity in human thinking, which comes with strengths and challenges. </p>
<p>When these challenges become overwhelming and impact how a person learns, plays, works or socialises, a diagnosis of <a href="https://www.psychiatry.org/patients-families/autism/what-is-autism-spectrum-disorder">autism spectrum disorder</a> is made. </p>
<h2>Where do the definitions come from?</h2>
<p>The Diagnostic and Statistical Manual of Mental Disorders (DSM) outlines the criteria clinicians use to diagnose mental illnesses and behavioural disorders.</p>
<p>Between 1994 and 2013, autistic disorder and Asperger’s disorder were the two primary diagnoses related to autism in the fourth edition of the manual, the DSM-4. </p>
<p>In 2013, the DSM-5 collapsed both diagnoses into one <a href="https://dsm.psychiatryonline.org/doi/book/10.1176/appi.books.9780890425596">autism spectrum disorder</a>. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/its-25-years-since-we-redefined-autism-heres-what-weve-learnt-125053">It's 25 years since we redefined autism – here's what we've learnt</a>
</strong>
</em>
</p>
<hr>
<h2>How did we used to think about autism?</h2>
<p>The two thinkers behind the DSM-4 diagnostic categories were Baltimore psychiatrist Leo Kanner and Viennese paediatrician Hans Asperger. They described the challenges faced by people who were later diagnosed with autistic disorder and Asperger’s disorder. </p>
<p>Kanner and Asperger observed patterns of behaviour that differed to typical thinkers in the domains of communication, social interaction and flexibility of behaviour and thinking. The variance was associated with challenges in adaptation and distress. </p>
<figure class="align-center ">
<img alt="Children in a 1950s classroom" src="https://images.theconversation.com/files/581138/original/file-20240312-24-z8htwz.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/581138/original/file-20240312-24-z8htwz.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=383&fit=crop&dpr=1 600w, https://images.theconversation.com/files/581138/original/file-20240312-24-z8htwz.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=383&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/581138/original/file-20240312-24-z8htwz.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=383&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/581138/original/file-20240312-24-z8htwz.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=482&fit=crop&dpr=1 754w, https://images.theconversation.com/files/581138/original/file-20240312-24-z8htwz.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=482&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/581138/original/file-20240312-24-z8htwz.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=482&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Kanner and Asperger described different thinking patterns in children with autism.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/czechoslovak-socialist-republic-circa-1950s-retro-390664261">Roman Nerud/Shutterstock</a></span>
</figcaption>
</figure>
<p>Between the 1940s and 1994, the majority of those diagnosed with autism also had an intellectual disability. Clinicians became focused on the accompanying intellectual disability as a necessary part of autism.</p>
<p>The introduction of Asperger’s disorder shifted this focus and acknowledged the diversity in autism. In the DSM-4 it superficially looked like autistic disorder and Asperger’s disorder were different things, with the Asperger’s criteria stating there could be no intellectual disability or delay in the development of speech. </p>
<p>Today, as a legacy of the recognition of the autism itself, the <a href="https://www.aihw.gov.au/reports/disability/autism-in-australia/contents/autism">majority of people</a> diagnosed with autism spectrum disorder – the new term from the DSM-5 – don’t a have an accompanying intellectual disability.</p>
<h2>What changed with ‘autism spectrum disorder’?</h2>
<p>The move to autism spectrum disorder brought the previously diagnosed autistic disorder and Asperger’s disorder under the one new diagnostic umbrella term. </p>
<p>It made clear that other diagnostic groups – such as intellectual disability – can co-exist with autism, but are separate things. </p>
<p>The other major change was acknowledging communication and social skills are intimately linked and not separable. Rather than separating “impaired communication” and “impaired social skills”, the diagnostic criteria changed to “impaired social communication”. </p>
<p>The introduction of the spectrum in the diagnostic term further clarified that people have varied capabilities in the flexibility of their thinking, behaviour and social communication – and this can change in response to the context the person is in. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/tiktok-is-teaching-the-world-about-autism-but-is-it-empowering-autistic-people-or-pigeonholing-them-192093">TikTok is teaching the world about autism – but is it empowering autistic people or pigeonholing them?</a>
</strong>
</em>
</p>
<hr>
<h2>Why do some people prefer the old terminology?</h2>
<p>Some people feel the clinical label of Asperger’s allowed a much more refined understanding of autism. This included recognising the achievements and great societal contributions of people with known or presumed autism. </p>
<p>The contraction “Aspie” played an enormous part in the shift to positive identity formation. In the time up to the release of the DSM-5, <a href="https://xminds.org/resources/Documents/Web%20files/Aspie%20Criteria%20by%20Attwood.pdf">Tony Attwood and Carol Gray</a>, two well known thinkers in the area of autism, highlighted the strengths associated with “being Aspie” as something to be proud of. But they also raised awareness of the challenges. </p>
<h2>What about identity-based language?</h2>
<p>A more recent shift in language has been the reclamation of what was once viewed as a slur – “autistic”. This was a shift from person-first language to identity-based language, from “person with autism spectrum disorder” to “autistic”. </p>
<p>The neurodiversity rights movement describes its aim to <a href="https://researchonline.jcu.edu.au/71531/1/JCU_71531_AAM.pdf">push back</a> against a breach of human rights resulting from the wish to cure, or fundamentally change, people with autism.</p>
<figure class="align-center ">
<img alt="Boy responds to play therapist" src="https://images.theconversation.com/files/581141/original/file-20240312-16-gmqam6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/581141/original/file-20240312-16-gmqam6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/581141/original/file-20240312-16-gmqam6.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/581141/original/file-20240312-16-gmqam6.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/581141/original/file-20240312-16-gmqam6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/581141/original/file-20240312-16-gmqam6.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/581141/original/file-20240312-16-gmqam6.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Autism is one of the forms of diversity in human thinking, which comes with strengths and challenges.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/happy-autism-boy-during-therapy-school-1914170926">Alex and Maria photo/Shutterstock</a></span>
</figcaption>
</figure>
<p>The movement uses a “social model of disability”. This views disability as arising from societies’ response to individuals and the failure to adjust to enable full participation. The inherent challenges in autism are seen as only a problem if not accommodated through reasonable adjustments. </p>
<p>However the social model contrasts itself against a very outdated medical or clinical model. </p>
<p>Current clinical thinking and practice focuses on <a href="https://www.collegianjournal.com/article/S1322-7696(22)00122-6/fulltext">targeted</a> supports to reduce distress, promote thriving and enable optimum individual participation in school, work, community and social activities. It doesn’t aim to cure or fundamentally change people with autism. </p>
<p>A diagnosis of autism spectrum disorder signals there are challenges beyond what will be solved by adjustments alone; individual supports are also needed. So it’s important to combine the best of the social model and contemporary clinical model.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/from-deficits-to-a-spectrum-thinking-around-autism-has-changed-now-there-are-calls-for-a-profound-autism-diagnosis-194049">From deficits to a spectrum, thinking around autism has changed. Now there are calls for a 'profound autism' diagnosis</a>
</strong>
</em>
</p>
<hr>
<img src="https://counter.theconversation.com/content/223643/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Andrew Cashin receives funding from the Australian Government National Disability Insurance Agency Information Linkages and Capacity Building Grant Scheme Grant number 4-DW65XKD. This is a mainstream capacity building grant to build the capacity to care for people with ASD and/or intellectual disability in mainstream healthcare. </span></em></p>Some people describe themselves as having Asperger’s disorder, while others call themselves autistic. But is there a difference?Andrew Cashin, Professor of Nursing, School of Health and Human Sciences, Southern Cross UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2231942024-02-27T05:35:56Z2024-02-27T05:35:56ZHow to be kind to yourself (without going to a day spa)<figure><img src="https://images.theconversation.com/files/575550/original/file-20240214-26-e51x1x.jpg?ixlib=rb-1.1.0&rect=0%2C1%2C998%2C664&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/mature-african-woman-looking-outside-window-2003674943">Ground Picture/Shutterstock</a></span></figcaption></figure><p>“I have to be hard on myself,” Sarah told me in a recent telehealth psychology session. “I would never reach my potential if I was kind and let myself off the hook.”</p>
<p>I could empathise with this fear of self-compassion from clients such as Sarah (not her real name). From a young age, we are taught to be kind to others, but self-kindness is never mentioned.</p>
<p>Instead, we are taught success hinges on self-sacrifice. And we need a healthy inner critic to bully us forward into becoming increasingly better versions of ourselves.</p>
<p>But <a href="https://journals.sagepub.com/doi/abs/10.1177/0146167212445599">research shows</a> there doesn’t have to be a trade-off between self-compassion and success. </p>
<p>Self-compassion can help you reach your potential, while supporting you to face the inevitable stumbles and setbacks along the way.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/self-love-might-seem-selfish-but-done-right-its-the-opposite-of-narcissism-205938">'Self-love' might seem selfish. But done right, it's the opposite of narcissism</a>
</strong>
</em>
</p>
<hr>
<h2>What is self-compassion?</h2>
<p><a href="https://self-compassion.org/">Self-compassion</a> has <a href="https://www.tandfonline.com/doi/abs/10.1080/15298860309027">three</a> key ingredients.</p>
<p><strong>1. Self-kindness</strong></p>
<p>This involves treating yourself with the same kindness you would extend towards a good friend – via your thoughts, feelings and actions – especially during life’s difficult moments.</p>
<p>For instance, if you find yourself fixating on a minor mistake you made at work, self-kindness might involve taking a ten-minute walk to shift focus, and reminding yourself it is OK to make mistakes sometimes, before moving on with your day.</p>
<p><strong>2. Mindfulness</strong></p>
<p>In this context, mindfulness involves being aware of your own experience of stress or suffering, rather than repressing or avoiding your feelings, or over-identifying with them. </p>
<p>Basically, you must see your stress with a clear (mindful) perspective before you can respond with kindness. If we avoid or are consumed by our suffering, we lose perspective.</p>
<p><strong>3. Common humanity</strong></p>
<p>Common humanity involves recognising our own experience of suffering as something that unites us as being human. </p>
<p>For instance, a sleep-deprived parent waking up (for the fourth time) to feed their newborn might choose to think about all the other parents around the world doing exactly the same thing – as opposed to feeling isolated and alone.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/i-was-an-expert-advisor-on-the-documentary-how-to-thrive-heres-what-happened-after-this-wellbeing-experiment-191500">I was an expert advisor on the documentary 'How to Thrive'. Here's what happened after this wellbeing experiment</a>
</strong>
</em>
</p>
<hr>
<h2>It’s not about day spas, or booking a manicure</h2>
<p>When Sarah voiced her fear that self-compassion would prevent her success, I explained self-compassion is distinct from self-indulgence.</p>
<p>“So is self-compassion just about booking in more mani/pedis?” Sarah asked. </p>
<p>Not really, I explained. A one-off trip to a day spa is unlikely to transform your mental health.</p>
<p>Instead, self-compassion is a flexible <a href="https://link.springer.com/chapter/10.1007/978-3-031-22348-8_7">psychological resilience factor</a> that shapes our thoughts, feelings and actions. </p>
<p>It’s associated with a suite of benefits to our <a href="https://iaap-journals.onlinelibrary.wiley.com/doi/abs/10.1111/aphw.12051">wellbeing</a>, <a href="https://www.tandfonline.com/doi/abs/10.1080/15298868.2011.639548">relationships</a> and <a href="https://www.tandfonline.com/doi/abs/10.1080/17437199.2019.1705872">health</a>.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/575551/original/file-20240214-20-zag2w0.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Massage therapist massaging woman's back" src="https://images.theconversation.com/files/575551/original/file-20240214-20-zag2w0.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/575551/original/file-20240214-20-zag2w0.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/575551/original/file-20240214-20-zag2w0.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/575551/original/file-20240214-20-zag2w0.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/575551/original/file-20240214-20-zag2w0.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/575551/original/file-20240214-20-zag2w0.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/575551/original/file-20240214-20-zag2w0.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">A one-off trip to a day spa is unlikely to transform your mental health.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/close-masseurs-hands-massaging-clients-back-181966475">baranq/Shutterstock</a></span>
</figcaption>
</figure>
<h2>What does the science say?</h2>
<p>Over the past 20 years, we’ve learned self-compassionate people enjoy a wide range of benefits. They tend to be <a href="https://iaap-journals.onlinelibrary.wiley.com/doi/abs/10.1111/aphw.12051">happier</a> and have <a href="https://doi.org/10.1016/j.cpr.2012.06.003">fewer psychological symptoms</a> of distress.</p>
<p>Those high on self-compassion <a href="https://journals.sagepub.com/doi/abs/10.1177/0146167212445599">persevere</a> following a failure. They say they are more motivated to overcome a personal weakness than those low on self-compassion, who are more likely to give up. </p>
<p>So rather than feeling trapped by your inadequacies, self-compassion encourages a <a href="https://hbr.org/2018/09/give-yourself-a-break-the-power-of-self-compassion">growth mindset</a>, helping you reach your potential.</p>
<p>However, self-compassion is not a panacea. It will not change your life circumstances or somehow make life “easy”. It is based on the premise that life is hard, and provides practical tools to cope.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/wellness-is-not-womens-friend-its-a-distraction-from-what-really-ails-us-177446">Wellness is not women's friend. It’s a distraction from what really ails us</a>
</strong>
</em>
</p>
<hr>
<h2>It’s a factor in healthy ageing</h2>
<p>I research menopause and healthy ageing and am especially interested in the value of self-compassion through menopause and in the second half of life. </p>
<p>Because self-compassion becomes important during life’s challenges, it can help people navigate physical symptoms (for instance, <a href="https://www.sciencedirect.com/science/article/pii/S0378512214001649?via%3Dihub">menopausal hot flushes</a>), life transitions such as <a href="https://journals.sagepub.com/doi/10.1177/0956797611429466">divorce</a>, and <a href="https://link.springer.com/chapter/10.1007/978-3-031-22348-8_7">promote healthy ageing</a>.</p>
<p>I’ve also teamed up with researchers at <a href="https://www.autismspectrum.org.au/">Autism Spectrum Australia</a> to explore self-compassion in autistic adults. </p>
<p>We found autistic adults report significantly <a href="https://link.springer.com/article/10.1007/s10803-022-05668-y">lower levels</a> of self-compassion than neurotypical adults. So we developed an online <a href="https://www.autismspectrum.org.au/blog/new-online-self-compassion-program-for-autistic-adults">self-compassion training program</a> for this at-risk population.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/tiktok-is-teaching-the-world-about-autism-but-is-it-empowering-autistic-people-or-pigeonholing-them-192093">TikTok is teaching the world about autism – but is it empowering autistic people or pigeonholing them?</a>
</strong>
</em>
</p>
<hr>
<h2>Three tips for self-compassion</h2>
<p>You <a href="https://onlinelibrary.wiley.com/doi/abs/10.1002/jclp.21923">can learn</a> self-compassion with these three exercises.</p>
<p><strong>1. What would you say to a friend?</strong></p>
<p>Think back to the last time you made a mistake. What did you say to yourself?</p>
<p>If you notice you’re treating yourself more like an enemy than a friend, don’t beat yourself up about it. Instead, try to think about what you might tell a friend, and direct that same friendly language towards yourself.</p>
<p><strong>2. Harness the power of touch</strong></p>
<p>Soothing human touch <a href="https://www.frontiersin.org/journals/psychiatry/articles/10.3389/fpsyt.2020.555058/full">activates</a> the parasympathetic “relaxation” branch of our nervous system and counteracts the fight or flight response. </p>
<p>Specifically, self-soothing touch (for instance, by placing both hands on your heart, stroking your forearm or giving yourself a hug) <a href="https://www.sciencedirect.com/science/article/pii/S2666497621000655">reduces</a> cortisol responses to psychosocial stress.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/575557/original/file-20240214-28-qoatq3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Middle-aged man hugging himself" src="https://images.theconversation.com/files/575557/original/file-20240214-28-qoatq3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/575557/original/file-20240214-28-qoatq3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/575557/original/file-20240214-28-qoatq3.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/575557/original/file-20240214-28-qoatq3.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/575557/original/file-20240214-28-qoatq3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/575557/original/file-20240214-28-qoatq3.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/575557/original/file-20240214-28-qoatq3.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Yes, hugging yourself can help.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/middle-age-hoary-man-wearing-brown-1667780113">Krakenimages.com/Shutterstock</a></span>
</figcaption>
</figure>
<p><strong>3. What do I need right now?</strong></p>
<p>Sometimes, it can be hard to figure out exactly what self-compassion looks like in a given moment. The question “what do I need right now” helps clarify your true needs.</p>
<p>For example, when I was 37 weeks pregnant, I woke up bolt awake one morning at 3am.</p>
<p>Rather than beating myself up about it, or fretting about not getting enough sleep, I gently placed my hands on my heart and took a few deep breaths. By asking myself “what do I need right now?” it became clear that listening to a gentle podcast/meditation fitted the bill (even though I wanted to addictively scroll my phone).</p><img src="https://counter.theconversation.com/content/223194/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Lydia Brown occasionally works as a clinical psychologist in private practice.</span></em></p>A one-off trip to a day spa is unlikely to transform your mental health. But these expert tips might help you cut yourself some slack.Lydia Brown, Senior Lecturer in Psychology, The University of MelbourneLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2155732024-01-11T13:25:42Z2024-01-11T13:25:42Z7 strategies to help gifted autistic students succeed in college<figure><img src="https://images.theconversation.com/files/567746/original/file-20240103-510735-5j56ht.jpg?ixlib=rb-1.1.0&rect=15%2C15%2C5119%2C3338&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Only 39% of autistic students who start college finish.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/students-studying-in-computer-lab-royalty-free-image/153337890?phrase=gifted+college+students&adppopup=true">Hill Street Studios / Getty Images</a></span></figcaption></figure><p>About <a href="https://sites.ed.gov/idea/files/44th-arc-for-idea.pdf">1 out of every 100</a> students in American public schools has autism. A subset of these students also have academic gifts and talents in a broad range of areas, including math, science, technology, the humanities and the arts. These students are often referred to as “<a href="https://doi.org/10.1007/s10803-021-05290-4">twice exceptional</a>.” </p>
<p>To learn more about this population, we <a href="https://doi.org/10.3389/fpsyt.2023.1125904">conducted research with three groups</a>: twice-exceptional autistic college students, their parents and college staff who work with them. The students were all enrolled in or recent graduates of competitive and very competitive colleges, including Ivy League institutions. We identified several strategies that can help these students transition to and succeed in college.</p>
<h2>1. Identify both autism and giftedness</h2>
<p>Identifying twice-exceptional students can be difficult because their gifts may mask their disabilities. Conversely, their disabilities may mask their gifts.</p>
<p>One student stated, “My mother was told that I was too smart to have a disability, so I did not really believe that I had a disability.”</p>
<p>When these students are identified only as autistic, they may be placed in special education programs that focus on remediation of deficits, rather than encouraging students to develop and build upon their strengths. They might not be enrolled in challenging courses. On the other hand, when gifted autistic students are identified only as gifted, they might not receive the support needed to accommodate their disabilities.</p>
<p>The students in our research project discussed how important it was for both their academic success and self-confidence to be <a href="https://doi.org/10.1007/s10803-021-05290-4">appropriately identified</a>. One student stated: “I had an amazing teacher who gave me opportunities to participate in projects. One of my mentors was a science teacher, and she also gave me advanced opportunities. She gave me so many chances for advanced work. She let me apply science to the real world and to me; that was beautiful. She gave me the confidence to know that I could go beyond and do extra work.”</p>
<h2>2. Take challenging courses</h2>
<p>Nearly every student and parent stated that college attendance was an expectation from an early age. To prepare for this goal, students took challenging courses focused on their strengths.</p>
<p>For example, of the students we interviewed, nearly three-quarters were enrolled in Advanced Placement, honors or college credit-bearing courses while in high school.</p>
<h2>3. Pursue extracurricular activities</h2>
<p>Almost every student participated in at least one extracurricular activity, and some in multiple activities.</p>
<p>Many of the students assumed leadership roles. One parent discussed how her son tutored his peers in high school and was seen as a leader. “He was a role model there,” the parent told us. “He had a lot of friends, and people really looked up to him and respected him. … He built his self-esteem, which really made a big difference.”</p>
<p>Both the students and parents discussed the importance of these activities as ways to pursue areas of interest, gain leadership experiences and find peers with similar interests.</p>
<p>About half of the students participated in residential camp or program experiences while in high school. They described how these programs helped them prepare to live away from home during college. One student said such programs “really helped, as it helped my ability to communicate with others and helped me to understand how to explain what I need to explain to others.” </p>
<h2>4. Be aware of factors in choosing a college</h2>
<p>The <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10354361/">students reported</a> that they were active participants in selecting their college. Finding a school with a program or major of interest was their biggest consideration.</p>
<p>Slightly less than half of the students interviewed started at a smaller school, or a smaller regional campus, before transferring to their final college or university. These smaller schools were often closer to home, enabling students to adjust to college life before they moved to their final competitive college or university. One parent told us that the family looked at schools that they could reach in two hours or so. “And that is because in case he had a meltdown, I wanted him to be in an area where I could drive and calm him down,” the parent said.</p>
<h2>5. Understand differences in laws and supports</h2>
<p><a href="https://theconversation.com/helping-your-student-with-disabilities-prepare-for-the-future-79625">Different laws</a> exist at the high school and college level regarding disability supports. For example, special education services will not be provided in college. Students will not receive modified instruction or assessments and instead may be eligible for reasonable accommodations, such as extended test time. </p>
<p>Each of the groups we studied spoke about the importance of understanding these differences and what they mean for the student seeking supports in college. One college staff member stressed that high school students should receive accommodations, if needed, and not modifications. He also suggested students understand “what a college professor is going to expect from them and how … parents aren’t going to contact professors.”</p>
<p>Colleges may offer different amounts of support for disabled students. These can range from basic accommodations to specific programs that provide an individual professional to support students. Colleges cannot charge extra fees for accommodations, but they can charge students to participate in more extensive and individualized support programs. Therefore, the level of disability support that the college offered was also a common consideration.</p>
<h2>6. Find supportive professionals</h2>
<p>Having a go-to contact person – an adviser, counselor, teacher or faculty member – was essential, the parents and students told us. Such professionals may recognize the student’s talents, support their interests and nurture opportunities for their growth. </p>
<p>One student said: “There were so many people that believed in me and gave me advanced courses and advanced independent projects. They gave me time to write short stories. They let me explore my strengths and interests.”</p>
<h2>7. Teach students to take initiative</h2>
<p>It is important to teach students how to advocate for themselves while in high school. The students we spoke with learned how to take care of their emotional and physical health through diet, exercise, meditation, music or finding time alone to recharge and deal with stress. They were involved in a variety of clubs and extracurricular activities. They used these experiences to make friends with similar interests.</p>
<p>These students also learned how to request and use available campus supports and academic accommodations when needed. Many of the students stated that they wished they had more opportunities to develop these skills while in high school.</p>
<p>One college staff member summarized: “one of the key successful skill sets is self-advocacy and being able to recognize when things are not going well and being able to speak up and say, ‘I need help.’ And then taking that even a step further to say, ‘Not only do I need help, but here’s how I need help.’ So it’s that level of self-awareness and then being able to articulate those needs to the right people.” </p>
<p>Gifted autistic students have tremendous potential but too often do not have the opportunity to develop their talents. Nationwide, <a href="https://collegeautismnetwork.org/jcsd-article/#:%7E:text=However%2C%20national%20statistics%20confirm%20that,et%20al.%2C%202011">only 39% of autistic students who start college finish</a>, compared with <a href="https://nces.ed.gov/fastfacts/display.asp?id=40">64% of all students</a>. </p>
<p>With high expectations, support for talent development from teachers and careful transition planning that takes a strength-based approach, gifted students with autism can succeed in competitive colleges. </p>
<p>Links to our research, instructional videos and other resources are available for free on our <a href="https://giftedasd.project.uconn.edu/">project website</a>.</p><img src="https://counter.theconversation.com/content/215573/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Joseph Madaus receives funding from the U.S. Department of Education, Javits Gifted and Talented Students Education Grant Program (Grant Number: S206A190023) and the Neag Foundation, Wyomissing, PA.</span></em></p><p class="fine-print"><em><span>Nicholas Gelbar receives funding from the U.S. Department of Education, Javits Gifted and Talented Students Education Grant Program (Grant Number: S206A190023).</span></em></p><p class="fine-print"><em><span>Sally Reis receives funding from the U.S. Department of Education, Javits Gifted and Talented Students Education Grant Program (Grant Number: S206A190023).</span></em></p>Self-advocacy and taking initiative have proven critical for autistic students who are also gifted, new research shows.Joseph Madaus, Professor of Education, University of ConnecticutNicholas Gelbar, Associate Research Professor, Department of Educational Psychology, University of ConnecticutSally Reis, University Teaching Fellow, Educational Psychology, University of ConnecticutLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2185662024-01-09T23:08:30Z2024-01-09T23:08:30ZHearing the voices of Indigenous people with neurodevelopmental disabilities<iframe style="width: 100%; height: 100px; border: none; position: relative; z-index: 1;" allowtransparency="" allow="clipboard-read; clipboard-write" src="https://narrations.ad-auris.com/widget/the-conversation-canada/hearing-the-voices-of-indigenous-people-with-neurodevelopmental-disabilities" width="100%" height="400"></iframe>
<p>Indigenous Peoples with neurodevelopmental disabilities (NDDs) and mental health challenges are among the most marginalized groups in the country. NDDs include things like autism and attention-deficit/hyperactivity disorder (ADHD). </p>
<p>Research points to <a href="https://uwaterloo.ca/canadian-index-wellbeing/reports/canadian-index-wellbeing-national-report">persistent health inequities</a>, and <a href="https://doi.org/10.1016/j.socscimed.2017.01.021">mental health research</a> has tended to overemphasize suicide and substance use in Indigenous populations. </p>
<p>Although their stories also tell of strengths, struggles and important community contributions, the voices of Indigenous Peoples with NDDs often go unheard. </p>
<p>A report that includes immediate and long-term calls to action was developed to shed light on the experiences of this under-represented group and create meaningful change in their lives. </p>
<p>“<a href="https://brocku.ca/thomson-lab/wp-content/uploads/sites/209/Forming-the-Circle-Indigeneity-Neurodevelopmental-Disability-Mental-Health-Sept-2023-1.pdf">Forming the Circle: 2023 Gathering on Indigeneity, Neurodevelopmental Disabilities and Mental Health</a>” was informed by a community event held last spring that brought together Indigenous community members, Knowledge Keepers and Elders, service providers, researchers and non-Indigenous allies from across Canada. </p>
<p>The report was authored by researchers from Brock University (Kendra Thomson) and the Centre for Addiction and Mental Health - CAMH (Louis Busch) and reflects the findings from the event and recommendations for future actions. Attendees provided feedback on the report in focus groups after the event and before the report was released.</p>
<h2>The gathering</h2>
<p><a href="https://brocku.ca/thomson-lab/2023-gathering-on-indigeneity-neurodevelopmental-disabilities-and-mental-health-in-ontario/">The gathering</a> explored how colonization, systemic discrimination and determinants of health such as food insecurity, housing and access to cultural safe services impact individuals, families and communities. </p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/Fxv1za8arlw?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">At the 2023 Gathering on Indigeneity, Neurodevelopmental Disabilities and Mental Health at the Centre for Addiction and Mental Health in Toronto, people with lived experience, traditional Knowledge Keepers, clinicians and researchers from across Canada shared knowledge and expertise.</span></figcaption>
</figure>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/as-an-indigenous-doctor-i-see-the-legacy-of-residential-schools-and-ongoing-racism-in-todays-health-care-162048">As an Indigenous doctor, I see the legacy of residential schools and ongoing racism in today's health care</a>
</strong>
</em>
</p>
<hr>
<p>Gathering attendees concluded that the path forward should begin with establishing a national network on Indigeneity, neurodevelopmental disabilities and mental health to take action that will enhance the health and well-being of Indigenous Peoples with NDDs and mental health challenges. </p>
<p>Some of the long-term recommendations within the report call for: </p>
<ul>
<li><p>The creation of programs to promote and preserve culture;</p></li>
<li><p>Partnerships between Indigenous and non-Indigenous organizations, with training provided to enhance the cultural safety of programs;</p></li>
<li><p>The development of culturally appropriate assessment tools and supportive programs for Indigenous Peoples with NDDs;</p></li>
<li><p>Examination of the experience of Indigenous Peoples with NDDs within the criminal justice system, youth populations, child welfare system and those impacted by environmental issues; and </p></li>
<li><p>Evaluation of the impact of incorporating traditional teachings and medicines within educational, social and health-related programs.</p></li>
</ul>
<h2>JJ’s story</h2>
<p>Among those in attendance was JJ Thunder Bear Man, an Anishinaabe man who travelled almost 2,000 kilometres from Dryden to Toronto to share his story at the gathering. </p>
<p>Born in the early 1980s in a community in northern Ontario, JJ was put into the foster-care system at age five as his parents faced the realities of their experiences at <a href="https://nctr.ca/education/teaching-resources/residential-school-history/">residential schools</a>. </p>
<p>Adolescence came with its own challenges, with JJ getting involved in a gang and struggling with addiction. His journey toward healing and recovery began when he joined Community Living in Dryden at the age of 18. His support team helped him to connect to his culture and to community.</p>
<p>The revelation of his spirit helper, the bear, and his spirit name, Thunder Bear Man, offered a powerful lens into JJ’s path to healing and connection to culture. </p>
<p>His heartfelt desire to reconnect with his family’s language, lost over time, also added a poignant layer to his story. He recalls having to ask his sister what his mother was saying when they finally got to visit years later, as she didn’t speak English, and he couldn’t speak Ojibwe. </p>
<p>JJ’s story, not unlike other young Indigenous Peoples living with NDDs and mental health challenges, highlights the <a href="https://afn.ca/community-services/languages/">dire need for preserving language and tradition</a>. </p>
<h2>Beautiful differences</h2>
<p>JJ’s story is one that contains experiences familiar to many Indigenous Peoples with neurodevelopmental differences and mental health challenges.</p>
<p>During the event, JJ issued a plea for kindness, understanding and companionship for neurodiverse individuals within Indigenous communities, reflecting on the impact acknowledgement and support can have. </p>
<p>The importance of a supportive “strength-based” approach was a theme that emerged again and again at the gathering, stressing the need to recognize individuals’ unique contributions, accomplishments and abilities. Many participants used the term “neurodevelopmental difference” rather than disability or disorder.</p>
<p>This report is intended to mark only the start of a broader discussion, new and strengthened relationships and a collective commitment across the country to take action to improve the lives of Indigenous Peoples with beautiful differences.</p>
<p><em>We would like to acknowledge JJ Thunder Bear Man for bravely sharing his moving story with us, and his helper, Lesley Barreira of Surrey Place, for supporting him in doing so.</em></p><img src="https://counter.theconversation.com/content/218566/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Kendra Thomson receives funding from the Canadian Institutes of Health Research.</span></em></p><p class="fine-print"><em><span>Louis Busch receives funding from the Social Sciences and Humanities Research Council (SSHRC).</span></em></p>Although their stories often tell of strengths, struggles and important community contributions, the voices of Indigenous people with neurodevelopmental disabilities often go unheard.Kendra Thomson, Associate Professor in the Department of Applied Disability Studies, Brock UniversityLouis Busch, Community Support Specialist, Shkaabe Makwa Centre for First Nations, Inuit, and Métis Wellness at CAMH, Doctoral Student, University of TorontoLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2199302024-01-04T16:08:40Z2024-01-04T16:08:40ZWhat is selective mutism? And is it a lifelong condition?<p>Belle* is six years old. Like many children, she is a playful and often boisterous child at home with her family. Unlike many children, she has an anxiety disorder which renders her speechless and often physically frozen in specific situations such as school or when she is out with her family.</p>
<p>This affects her ability to join class activities and make friends at school. Other typical childhood experiences, such as attending birthday parties or joining in after-school activities, prove to be challenging for her. </p>
<p>Belle has selective mutism, which affects about <a href="https://doi.org/10.1097/00004583-200208000-00012">one in 140 children</a> under the age of eight years.</p>
<p>Selective mutism is an anxiety disorder characterised by a consistent pattern of silence in specific social situations where speech is expected (for example, at school or work) while the person is able to speak comfortably in other situations (such as at home with close family). </p>
<p>To receive a <a href="https://doi.org/10.1176/appi.books.9780890425787.x05_Anxiety_Disorders">diagnosis</a>, this pattern must persist for over a month and cannot be explained by another communication or psychiatric condition. This lack of speech affects the person’s education, friendships and work.</p>
<p>Selective mutism usually starts between two to five years. Although the condition becomes less common in <a href="https://doi.org/10.1111/j.1469-7610.1997.tb01859.x">adolescence</a> and <a href="http://www.ispeak.org.uk/ResearchFindings.aspx">adulthood</a>, if left untreated, it has a significant effect on the person’s <a href="https://doi.org/10.1080/14780887.2015.1054533">mental health, wellbeing and life opportunities</a> as an adult.</p>
<figure class="align-center ">
<img alt="Child sitting on a bench looking glum" src="https://images.theconversation.com/files/567670/original/file-20240103-23-tt5y1k.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/567670/original/file-20240103-23-tt5y1k.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=405&fit=crop&dpr=1 600w, https://images.theconversation.com/files/567670/original/file-20240103-23-tt5y1k.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=405&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/567670/original/file-20240103-23-tt5y1k.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=405&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/567670/original/file-20240103-23-tt5y1k.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=509&fit=crop&dpr=1 754w, https://images.theconversation.com/files/567670/original/file-20240103-23-tt5y1k.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=509&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/567670/original/file-20240103-23-tt5y1k.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=509&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Selective mutism can affect friendships.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/sad-boy-outside-schoolyard-746118838">patat/Shutterstock</a></span>
</figcaption>
</figure>
<h2>No one cause</h2>
<p>There is no one cause of selective mutism. Instead, it is developed by the interaction of several <a href="https://doi.org/10.1007/s10567-015-0181-y">risk factors</a> such as the person’s genes, temperament, brain development and environment. So each person with selective mutism is different.</p>
<p>In 2011, researchers at the University of California <a href="https://doi.org/10.1016/j.biopsych.2010.11.008">found</a> that the same gene linked to autism, language impairment and anxiety traits is also associated with selective mutism. Parents often report a family history of anxiety or communication difficulties, which supports this.</p>
<p>Children with selective mutism often display what is known as a <a href="https://doi.org/10.1007/s00787-016-0835-4">“behavioural inhibition” temperament</a>. People with this temperament tend to show fear and avoidance of new people, situations and objects. These children often avoid taking risks, which can hinder progress during treatment, since social communication and interaction involve taking risks.</p>
<p>Studies have also shown a high occurrence of <a href="https://doi.org/10.1097/00004583-200002000-00026">communication difficulties</a>, <a href="https://doi.org/10.2147/ndt.s154966">autism</a> and <a href="https://psycnet.apa.org/doi/10.1007/s007870200013">developmental delays</a> in the people with selective mutism.</p>
<p><a href="https://psycnet.apa.org/doi/10.1007/s12310-016-9198-8">Researchers</a> have suggested that some children’s lack of speech may be reinforced by significant people in their environment, such as family members and teachers. </p>
<p>The authors of <a href="https://www.routledge.com/The-Selective-Mutism-Resource-Manual-2nd-Edition/Johnson-Wintgens/p/book/9781909301337">The Selective Mutism Resource Manual</a>, used by many therapists in the UK, suggest that when these significant people pressure the child to speak or allow communication avoidance, they are maintaining a selective mutism environment. </p>
<p>In Belle’s situation, there were two parts to her treatment for selective mutism. The first part was a <a href="https://psycnet.apa.org/doi/10.1007/s12310-016-9198-8">systems approach</a>, which addressed the environmental factors that maintained the selective mutism.</p>
<p>The systems approach involved training her parents and teachers about selective mutism and how to support her communication in everyday situations. They were asked to adapt their communication styles with her to take away the pressure for speaking and yet create opportunities for her to communicate verbally and non-verbally. </p>
<p>They were also asked to address any situation where people put pressure on her to speak (for example, school dinner staff insisting she speak to order her food) or where she was criticised for not speaking (for example, grandparents saying that she was rude).</p>
<p>The second part of Belle’s treatment used a <a href="https://psycnet.apa.org/doi/10.1007/s12310-016-9198-8">behavioural approach</a> involving a small steps exposure and reward programme. The exposure technique used in the programme was “sliding in”, also known as stimulus fading.</p>
<p>During a sliding-in session, Belle and her mother comfortably played and talked in a room at school. The year one class teacher who had never heard Belle’s voice was introduced in small steps to the activity while Belle remained comfortable enough to continue talking. The small steps progressed from Belle using her voice in front of her teacher to eventually speaking to her.</p>
<p>Belle continued to make progress by slowly introducing new people in different situations. She was involved in every step of the treatment, which helped her feel more confident and in control of her anxiety.</p>
<p>My colleagues and I <a href="https://doi.org/10.1002/jcv2.12166">systematically reviewed the literature</a> on selective mutism treatments without medication. We found that children who received treatments using a combined systems and behavioural approach, similar to Belle’s experience, made significant improvements in their speaking behaviour than those who had no treatment. These treatments involved a therapist, parent, teacher or camp counsellor, and the child. </p>
<p>In Belle’s case, she was talking to children in the local park within a year of starting the treatment. She was contributing to class discussions and being her playful and boisterous self in the school playground. And she started making friends in her local gymnastics club.</p>
<p><em>*To ensure anonymity, Belle is a composite of various children I have treated for selective mutism.</em></p>
<p><em>For more information on selective mutism, access the Selective Mutism Information and Research Association (<a href="http://www.selectivemutism.org.uk/">Smira</a>) website. For adults with selective mutism who want to connect with a community for support access the <a href="http://www.ispeak.org.uk/">iSpeak.org.uk</a> website or search <a href="https://www.nsun.org.uk/sm-talking-circles-and-covid-19/">SM Talking Circles</a>.</em></p><img src="https://counter.theconversation.com/content/219930/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Gino Hipolito receives funding from the National Institute of Health and Care Research (NIHR) Clinical Doctoral Research Fellowship (NIHR302167). Gino also works for St George's University Hospitals NHS Foundation Trust as paediatric speech and language therapist. The views expressed are those of the author and not necessarily those of the NHS, NIHR or the Department of Health and Social Care.</span></em></p>One in 140 children under the age of eight have selective mutism.Gino Hipolito, DPhil Candidate, Experimental Psychology, University of OxfordLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2170592023-12-13T13:35:34Z2023-12-13T13:35:34ZHealth misinformation is rampant on social media – here’s what it does, why it spreads and what people can do about it<figure><img src="https://images.theconversation.com/files/564379/original/file-20231207-23-75o0yn.jpg?ixlib=rb-1.1.0&rect=62%2C26%2C5904%2C4070&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Media literacy is more essential than ever. </span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/illustration/myth-fake-news-and-facts-vector-illustration-royalty-free-illustration/1358189151?phrase=social+media+misinformation&searchscope=image%2Cfilm&adppopup=true">Wanlee Prachyapanaprai/iStock via Getty Images Plus</a></span></figcaption></figure><p>The global anti-vaccine movement and vaccine hesitancy that <a href="https://doi.org/10.1093/cid/ciaa433">accelerated during the COVID-19 pandemic</a> show no signs of abating.</p>
<p>According to a survey of U.S. adults, Americans in October 2023 were <a href="https://www.annenbergpublicpolicycenter.org/vaccine-confidence-falls-as-belief-in-health-misinformation-grows/">less likely to view approved vaccines as safe</a> than they were in April 2021. As vaccine confidence falls, health misinformation continues to spread like wildfire on social media and in real life.</p>
<p>I am a <a href="https://www.bu.edu/sph/profile/monica-wang/">public health</a> <a href="https://scholar.google.com/citations?user=5g6xyEMAAAAJ&hl=en">expert</a> in <a href="https://doi.org/10.1093/abm/kaaa088">health misinformation</a>, <a href="https://doi.org/10.1093/tbm/ibac096">science communication</a> and <a href="https://doi.org/10.1891/9780826180148">health behavior change</a>.</p>
<p>In my view, we cannot underestimate the <a href="https://doi.org/10.2105/AJPH.2020.305905">dangers of health misinformation</a> and the need to understand why it spreads and what we can do about it. Health misinformation is defined as any health-related claim that is false based on current scientific consensus. </p>
<h2>False claims about vaccines</h2>
<p>Vaccines are the No. 1 topic of misleading health claims. Some <a href="https://doi.org/10.3389%2Ffmicb.2020.00372">common myths about vaccines</a> include: </p>
<ul>
<li><p><strong>Their supposed link with human diagnoses of autism</strong>. Multiple studies have <a href="https://doi.org/10.1016/j.vaccine.2014.04.085">discredited this claim</a>, and it has been firmly refuted by the <a href="https://www.who.int/groups/global-advisory-committee-on-vaccine-safety/topics/mmr-vaccines-and-autism">World Health Organization</a>, the <a href="https://www.nationalacademies.org/based-on-science/vaccines-do-not-cause-autism">National Academies of Sciences, Engineering and Medicine</a>, the <a href="https://publications.aap.org/patiented/article-abstract/doi/10.1542/peo_document599/82016/Vaccines-Autism-Toolkit">American Academy of Pediatrics</a> and the <a href="https://www.cdc.gov/vaccinesafety/concerns/autism.html">Centers for Disease Control and Prevention</a>.</p></li>
<li><p><strong>Concerns with the COVID-19 vaccine leading to infertility</strong>. This connection has been debunked through a <a href="https://doi.org/10.1016%2Fj.vaccine.2022.09.019">systematic review and meta-analysis</a>, one of the most robust forms of synthesizing scientific evidence.</p></li>
<li><p><strong>Safety concerns about vaccine ingredients, such as thimerosal, aluminum and formaldehyde</strong>. Extensive studies have shown these ingredients are safe when used in <a href="https://www.aaaai.org/tools-for-the-public/conditions-library/allergies/vaccine-myth-fact">the minimal amounts contained in vaccines</a>.</p></li>
<li><p><strong>Vaccines as medically unnecessary to protect from disease</strong>. The development and dissemination of vaccines for life-threatening diseases such as smallpox, polio, measles, mumps, rubella and the flu has saved <a href="https://doi.org/10.1073%2Fpnas.1704507114">millions of lives</a>. It also played a critical role in historic <a href="https://doi.org/10.1073/pnas.1413559111">increases in average life expectancy</a> – from 47 years in 1900 in the U.S. to 76 years in 2023. </p></li>
</ul>
<p><div data-react-class="InstagramEmbed" data-react-props="{"url":"https://www.instagram.com/p/CX9WyO4s4kA","accessToken":"127105130696839|b4b75090c9688d81dfd245afe6052f20"}"></div></p>
<h2>The costs of health misinformation</h2>
<p>Beliefs in such myths have come at the highest cost. </p>
<p>An estimated 319,000 COVID-19 deaths that occurred between January 2021 and April 2022 in the U.S. <a href="https://globalepidemics.org/vaccinations/">could have been prevented</a> if those individuals had been vaccinated, according to a data dashboard from the Brown University School of Public Health. Misinformation and disinformation about COVID-19 vaccines alone have cost the U.S. economy an estimated <a href="https://doi.org/10.1093/tbm/ibac096">US$50 million to $300 million per day</a> in direct costs from hospitalizations, long-term illness, lives lost and economic losses from missed work.</p>
<p>Though vaccine myths and misunderstandings tend to dominate conversations about health, there is an <a href="https://doi.org/10.2196%2F17187">abundance of misinformation</a> on social media surrounding diets and eating disorders, smoking or substance use, chronic diseases and medical treatments. </p>
<p>My team’s research and that of others show that social <a href="https://doi.org/10.2196/43961">media platforms have become go-to sources</a> <a href="https://doi.org/10.2196%2F17917">for health information</a>, especially among adolescents and young adults.
However, many people are not equipped to maneuver the maze of health misinformation.</p>
<p>For example, an analysis of Instagram and TikTok posts from 2022 to 2023 by The Washington Post and the nonprofit news site The Examination found that the food, beverage and dietary supplement industries paid dozens of registered dietitian influencers to <a href="https://www.washingtonpost.com/wellness/2023/09/13/dietitian-instagram-tiktok-paid-food-industry/">post content promoting diet soda, sugar and supplements</a>, reaching millions of viewers. The dietitians’ relationships with the food industry were not always made clear to viewers. </p>
<p>Studies show that health misinformation spread on social media results in <a href="https://doi.org/10.1016%2Fj.vaccine.2022.09.046">fewer people getting vaccinated</a> and can also increase the risk of other health dangers such as <a href="https://www.scientificamerican.com/article/how-a-weight-loss-trend-on-tiktok-might-encourage-eating-disorders/">disordered eating</a> and <a href="https://doi.org/10.18297/tce/vol1/iss1/16">unsafe sex practices and sexually transmitted infections</a>. Health misinformation has even bled over into animal health, with a 2023 study finding that 53% of dog owners surveyed in a nationally representative sample report being <a href="https://doi.org/10.1016/j.vaccine.2023.08.059">skeptical of pet vaccines</a>.</p>
<h2>Health misinformation is on the rise</h2>
<p>One major reason behind the spread of health misinformation is <a href="https://www.pewresearch.org/science/2023/11/14/americans-trust-in-scientists-positive-views-of-science-continue-to-decline/">declining trust in science</a> and <a href="https://www.pewresearch.org/politics/2023/09/19/public-trust-in-government-1958-2023/">government</a>. Rising political polarization, coupled with <a href="https://doi.org/10.1080%2F08964289.2019.1619511">historical medical mistrust</a> among communities that have experienced and continue to experience <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4194634/">unequal health care treatment</a>, exacerbates preexisting divides.</p>
<p>The lack of trust is both fueled and reinforced by the way misinformation can spread today. Social media platforms allow people to <a href="https://doi.org/10.2105%2FAJPH.2020.305905">form information silos</a> with ease; you can curate your networks and your feed by unfollowing or muting contradictory views from your own and liking and sharing content that aligns with your existing beliefs and value systems. </p>
<p>By tailoring content based on past interactions, social media algorithms can unintentionally <a href="https://doi.org/10.1016/j.tics.2023.06.008">limit your exposure</a> to diverse perspectives and generate a fragmented and incomplete understanding of information. Even more concerning, a study of misinformation spread on Twitter analyzing data from 2006 to 2017 found that <a href="https://doi.org/10.1126/science.aap9559">falsehoods were 70% more likely to be shared</a> than the truth and spread “further, faster, deeper and more broadly than the truth” across all categories of information.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/GIaRw5R6Da4?wmode=transparent&start=2" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">The average kindergarten student sees about 70 media messages every day. By the time they’re in high school, teens spend more than a third of their day using media.</span></figcaption>
</figure>
<h2>How to combat misinformation</h2>
<p>The lack of robust and standardized regulation of misinformation content on social media places the difficult task of discerning what is true or false information on individual users. We scientists and research entities can also do better in communicating our science and rebuilding trust, as my colleague and I have <a href="https://www.bu.edu/articles/2023/rebuilding-public-trust-in-science/">previously written</a>. I also provide <a href="https://doi.org/10.1001/jamapediatrics.2023.5282">peer-reviewed recommendations</a> for the important roles that parents/caregivers, policymakers and social media companies can play. </p>
<p>Below are some steps that consumers can take to identify and prevent health misinformation spread: </p>
<ul>
<li><p><strong>Check the source.</strong> Determine the credibility of the health information by checking if the source is a reputable organization or agency such as the <a href="https://www.who.int">World Health Organization</a>, the <a href="https://www.nih.gov">National Institutes of Health</a> or the <a href="https://www.cdc.gov">Centers for Disease Control and Prevention</a>. Other credible sources include an established medical or scientific institution or a peer-reviewed study in an academic journal. Be cautious of information that comes from unknown or biased sources.</p></li>
<li><p><strong>Examine author credentials.</strong> Look for qualifications, expertise and relevant professional affiliations for the author or authors presenting the information. Be wary if author information is missing or difficult to verify.</p></li>
<li><p><strong>Pay attention to the date.</strong> Scientific knowledge by design is meant to evolve as new evidence emerges. Outdated information may not be the most accurate. Look for recent data and updates that contextualize findings within the broader field. </p></li>
<li><p><strong>Cross-reference to determine scientific consensus.</strong> Cross-reference information across multiple reliable sources. Strong consensus across experts and multiple scientific studies supports the validity of health information. If a health claim on social media contradicts widely accepted scientific consensus and stems from unknown or unreputable sources, it is likely unreliable. </p></li>
<li><p><strong>Question sensational claims.</strong> Misleading health information often uses sensational language designed to provoke strong emotions to grab attention. Phrases like “miracle cure,” “secret remedy” or “guaranteed results” may signal exaggeration. Be alert for potential conflicts of interest and sponsored content.</p></li>
<li><p><strong>Weigh scientific evidence over individual anecdotes.</strong> Prioritize information grounded in scientific studies that have undergone rigorous research methods, such as randomized controlled trials, peer review and validation. When done well with representative samples, the scientific process provides a reliable foundation for health recommendations compared to individual anecdotes. Though personal stories can be compelling, they should not be the sole basis for health decisions. </p></li>
<li><p><strong>Talk with a health care professional.</strong> If health information is confusing or contradictory, seek guidance from trusted health care providers who can offer personalized advice based on their expertise and individual health needs. </p></li>
<li><p><strong>When in doubt, don’t share.</strong> Sharing health claims without validity or verification contributes to misinformation spread and preventable harm.</p></li>
</ul>
<p>All of us can play a part in responsibly consuming and sharing information so that the spread of the truth outpaces the false.</p><img src="https://counter.theconversation.com/content/217059/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Monica Wang receives funding from the National Institutes of Health. </span></em></p>Studies show that health misinformation on social media has led to fewer people getting vaccinated and more lives lost to COVID-19 and other life-threatening diseases.Monica Wang, Associate Professor of Public Health, Boston UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2125172023-12-01T13:38:43Z2023-12-01T13:38:43ZThese programs make college possible for students with developmental disabilities<figure><img src="https://images.theconversation.com/files/560916/original/file-20231121-24-bz6l3j.jpg?ixlib=rb-1.1.0&rect=17%2C35%2C5832%2C3838&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Employment prospects are greatly enhanced for students with developmental delays if they acquired postsecondary education.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/man-with-down-syndrome-graduating-royalty-free-image/1346470556?phrase=college+graduation+and+intellectual+disability+&adppopup=true">Drs Producoes via Getty Images</a></span></figcaption></figure><p>For students with intellectual and developmental disabilities, opportunities to attend college may appear few and far between. But this is changing, thanks to <a href="https://www2.ed.gov/policy/speced/guid/increasing-postsecondary-opportunities-and-success-09-17-2019.pdf">inclusive postsecondary education</a> – known as IPSE – programs at colleges across the United States. Here are some important things to know about these programs.</p>
<h2>What is inclusive postsecondary education?</h2>
<p><a href="https://www2.ed.gov/policy/speced/guid/increasing-postsecondary-opportunities-and-success-09-17-2019.pdf">Inclusive postsecondary education</a> refers to programs at colleges and technical schools that provide career and transitional training to people with intellectual and developmental disabilities. Transitional training helps these individuals move into adulthood, teaching them skills like how to set up a bank account, do laundry or cook for themselves.</p>
<h2>How many of these programs exist nationwide?</h2>
<p>Today, only <a href="https://thinkcollege.net/resource/advocacy-outreach/my-college-life-students-with-intellectual-disability-share-their-lived">about 2%</a> of the approximately 420,000 eligible children with intellectual disabilities attend an IPSE program after high school. But the number of these programs at U.S. colleges and universities has more than doubled since 2009, <a href="https://gcdd.org/about/105-general-content/3056-inclusive-post-secondary-education-ipse.html">from 148 to 328</a>. Every state <a href="https://thinkcollege.net/college-search">except for Wyoming</a> has at least one such program, while states like California, Texas, New York, Florida and Massachusetts have numerous programs.</p>
<h2>How did inclusive postsecondary education become important?</h2>
<p>As recently as the 1970s, students with intellectual and developmental disabilities did not have equal access to public primary and secondary schools. The disparity was so glaring, <a href="https://thinkcollege.net/sites/default/files/files/resources/Insight_12_R.pdf">parents in 26 states filed lawsuits</a> to assert their children’s right to a public education.</p>
<p>In 1975, <a href="https://sites.ed.gov/idea/IDEA-History#:%7E:text=On%20November%2029%2C%201975%2C%20President,and%20locality%20across%20the%20country">Congress passed a law</a> now known as the <a href="https://sites.ed.gov/idea/">Individuals with Disabilities Education Act</a> – or IDEA – which makes a free public education available to students with intellectual and developmental disabilities. From 1975 through 2021, the U.S. education system went from excluding 1.8 million children with disabilities to <a href="https://sites.ed.gov/idea/about-idea/#IDEA-History">providing more than 7.5 million children</a> with an education.</p>
<p>Under the Individuals with Disabilities Education Act, most disabled students are <a href="https://sites.ed.gov/idea/files/postsecondary-transition-guide-august-2020.pdf">required to have a detailed plan</a> in place, no later than the age of 16, for how they will transition to adulthood. These plans must describe any resources needed for the transition period. Inclusive postsecondary education programs are considered one of the available resources.</p>
<h2>How do inclusive postsecondary education programs work?</h2>
<p>These programs focus on academic access, career development, campus membership and self-determination. Many programs use person-centered planning. This allows students to guide their own education. Students may work toward a certificate. However, inclusive postsecondary education programs do not lead to a college degree.</p>
<p>I teach at Kennesaw State University, where I serve as executive director of the oldest and largest of nine IPSE programs in Georgia: <a href="https://wellstarcollege.kennesaw.edu/academy/index.php">the Academy for Inclusive Learning and Social Growth</a>. The academy currently enrolls 48 students.</p>
<p>Students may attend the academy for two years or four. Years one and two constitute the <a href="https://wellstarcollege.kennesaw.edu/academy/certifications/details-asce.php">Academic, Social, and Career Enrichment Program</a>. Years three and four are known as the <a href="https://wellstarcollege.kennesaw.edu/academy/certifications/details-alcd.php">Advanced Leadership and Career Development Program</a>. After successfully completing the first two years, students may be invited back for the second two years. Students in each program earn a certificate that is recognized by the Georgia Board of Regents. </p>
<p>To complete a certificate, students must take 16 courses over four semesters. They must also successfully complete an internship and register social interaction hours. Each semester, students audit at least one course alongside their neurotypical peers. To graduate, students also must complete at least two additional trainings in the areas of culinary skills, computer technology, customer service or social media.</p>
<p>The academy provides extensive student support. Program advisers make sure that students excel and have their academic and social needs met. Course accommodations are made based on each student’s reading level and retention. Every student is assigned a <a href="https://wellstarcollege.kennesaw.edu/academy/mentor.php">peer mentor</a>. The mentor accompanies them to classes and social gatherings. </p>
<h2>Who is eligible for inclusive postsecondary education programs?</h2>
<p>Admission requirements vary between different programs. For example, the academy where I work requires a minimum of a third grade reading level and the absence of significant behavioral problems. The academy also requires the completion of a psychological exam, a copy of any individualized education plan and an academic transcript. Most important, though, is the student’s desire to participate and complete all of the academic, social and career <a href="https://wellstarcollege.kennesaw.edu/academy/admission/criteria-process.php">requirements for the certificate</a>.</p>
<h2>Do inclusive postsecondary education programs make a difference?</h2>
<p>As a program director, one of the biggest benefits that I see is that students develop friend groups, often for the first time, and are able, depending upon the program, to live independent of their parents. At Kennesaw State University, about 75% of our 48 students reside on campus in university housing with a roommate. </p>
<p>There are a number of other <a href="https://journals.sagepub.com/doi/10.1177/00224669211013354">benefits</a> of inclusive postsecondary education programs. Research by Think College, a national research and evaluation center, indicates that a student who completes an inclusive postsecondary education program has a <a href="https://thinkcollege.net/sites/default/files/files/resources/teachers_can_F_918.pdf">65% chance of being employed within one year</a>. This is compared with the 17% national employment rate for adults with a developmental or intellectual disability. Anecdotal evidence suggests that students in these programs have high rates of attendance and graduation. For example, the Academy for Inclusive Learning and Social Growth has an 85% graduation rate for students in our two-year program.</p>
<p>Despite all the benefits I’ve observed in my role, <a href="https://www.centre-ipse.org/uploads/6/2/0/8/62081869/mossoff_j_greenholt_j_hurtado_t_2009_assesment_ipse_young_adlts_with_dd.pdf">assessing all the elements of success</a> across the field is still a challenge. That’s because these programs are complex, relatively new, and every program is different.</p>
<h2>How do I learn more?</h2>
<p>Families can learn more about IPSE programs by viewing the <a href="https://thinkcollege.net/college-search">Think College</a> website and also by contacting the disability and <a href="https://rsa.ed.gov/about/states">vocational rehabilitation agencies</a> in their states.</p><img src="https://counter.theconversation.com/content/212517/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Neil Edwin Duchac II- The Academy for Inclusive Learning and Social Growth receives funding from the Georgia Council on Developmental Disabilities.</span></em></p>Inclusive postsecondary education programs help students with intellectual disabilities make friends and become independent adults.Neil Edwin Duchac II, Associate Professor of Social Work and Human Services, Kennesaw State UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2171562023-11-28T12:02:18Z2023-11-28T12:02:18ZGirls less likely to be diagnosed with special educational needs – new research<figure><img src="https://images.theconversation.com/files/561328/original/file-20231123-15-vctgar.jpg?ixlib=rb-1.1.0&rect=121%2C0%2C4372%2C3002&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/upset-caucasian-girl-sitting-desk-writing-2105450654">Mariia Korneeva/Shutterstock</a></span></figcaption></figure><p>The point when <a href="https://www.gov.uk/children-with-special-educational-needs">a child with special educational needs (SEN)</a> is diagnosed is an important moment in their lives. </p>
<p>It allows schools to provide them with access to additional resources, such as assistive technology, specialised teaching programs or the services of professionals such as educational psychologists. These resources help to meet children’s academic, emotional or social needs.</p>
<p>But girls and boys don’t fare equally. My <a href="https://bera-journals.onlinelibrary.wiley.com/doi/full/10.1002/rev3.3437">recent research</a> with colleague Hsin Wang, conducted using UK government data, found a consistent gender gap in SEN identification.</p>
<p>Of the roughly 1.5 million children in English schools identified for SEN services in 2022-23, only 0.5 million were girls. We found the same pattern across the country, with girls making up between 34% to 36% of all students accessing SEN support in most regions.</p>
<p>In some cases, this may be because certain disabilities are more common in boys. But it is likely to be also down to gender bias in assessment and from those referring children for assessment, as well as girls being better at hiding the challenges they face from some conditions.</p>
<h2>An established pattern</h2>
<p>When we looked at specific types of special educational needs we found that boys were more likely to be diagnosed for all of them. Boys made up 75% of those diagnosed with autism spectrum disorder. They were also about two times more likely than girls to be diagnosed with speech, language and communication disorders, as well as mental health disorders.</p>
<p>We did find some changes when looking at SEN identification rates over time. Between 2015 and 2022, the proportion of girls out of all students identified with autism spectrum disorder increased from 17% to 25%. Similarly, there was an increase in the proportion of girls being identified for specific learning difficulties – from 38% in 2015 to 44% in 2022. </p>
<p>However, this trend of increasing female identification does not apply to all disability categories. For example, from 2015 to 2022, girls consistently accounted for 44% of those identified with visual impairments. </p>
<p>Past research has suggested several reasons for these gender differences. Biological factors may make boys more vulnerable to certain disabilities. For instance, research has suggested that neurobiological differences between girls and boys make <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6509633/pdf/CroatMedJ_60_0141.pdf">boys more likely</a> to be diagnosed with speech, language and communication needs. </p>
<h2>Gender bias</h2>
<p>But social factors can also play a big part. <a href="https://link.springer.com/article/10.1007/s11881-997-0024-8">Past research</a> has suggested that gender bias among people who refer students for diagnostic assessment, like teachers, contributes to this unequal distribution. <a href="https://pubmed.ncbi.nlm.nih.gov/17903118/">One study of twins</a> reports that teachers may be more likely to refer boys because boys are more disruptive and command more attention, while girls go under the radar. </p>
<figure class="align-center ">
<img alt="Children putting hands up to answer teacher's question" src="https://images.theconversation.com/files/561339/original/file-20231123-23-uhd0zr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/561339/original/file-20231123-23-uhd0zr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/561339/original/file-20231123-23-uhd0zr.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/561339/original/file-20231123-23-uhd0zr.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/561339/original/file-20231123-23-uhd0zr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/561339/original/file-20231123-23-uhd0zr.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/561339/original/file-20231123-23-uhd0zr.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Boys may command more attention in class.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/pupils-raising-hand-during-geography-lesson-253351462">ESB Professional/Shutterstock</a></span>
</figcaption>
</figure>
<p>Research on autism also points out the “<a href="https://molecularautism.biomedcentral.com/articles/10.1186/s13229-016-0073-0">camouflage effect</a>”. This means girls may be better at masking or hiding their autism-related challenges, leading to under-identification or delayed diagnosis. </p>
<p><a href="https://link.springer.com/article/10.1007/s10803-018-3510-4">Some researchers</a> have also reported that assessments used for diagnosis are typically based on male characteristics, and potentially overlook how autism spectrum disorder presents differently in girls. </p>
<p>This imbalance is likely to mean that some girls are not getting the recognition and support they need. </p>
<p><a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7557860/">Past research</a> has found that girls have higher rates of mental health disorders such as anxiety compared to boys. Importantly, for some disability categories such as visual impairment or intellectual disabilities, data on gender differences is scarce. </p>
<p>The low number of girls identified with disabilities is worrying. Early detection of disabilities is vital to provide students with necessary services to support their development. Delayed or missed diagnoses for girls can worsen their challenges and affect their long-term outcomes. </p>
<p>Awareness of the differences between girls and boys who need support for special educational needs is crucial. For example, teachers and schools should adopt standardised criteria for SEN diagnosis. This can help reduce subjective judgements that are influenced by biases and ensure fair support for all students.</p><img src="https://counter.theconversation.com/content/217156/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Johny Daniel does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Of the 1.5 million children in English schools identified for SEN services, only one in three – 0.5 million – were girls.Johny Daniel, Assistant Professor, School of Education, Durham UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2179212023-11-21T19:06:39Z2023-11-21T19:06:39ZAustralia’s rates of autism should be celebrated – but real-life impact, not diagnosis, should determine NDIS support<p>Ahead of the release of the government’s <a href="https://www.ndisreview.gov.au/about">review into the National Disability Insurance Scheme (NDIS)</a>, the topic taking centre stage is the diagnosis of autism. Over one third of people accessing the scheme list it as a primary disability. </p>
<p>NDIS Minister Bill Shorten has <a href="https://www.smh.com.au/politics/federal/shorten-flags-autism-changes-says-ndis-can-t-be-surrogate-school-system-20231120-p5elci.html">flagged changes</a> to NDIS access, shifting the emphasis from diagnosis to the real-world impact of autism on learning or participation in society. He’s called for education and health systems to step up and be part of a broader ecosystem of supports. </p>
<p>“We just want to move away from diagnosis writing you into the scheme,” the minister <a href="https://www.smh.com.au/politics/federal/shorten-flags-autism-changes-says-ndis-can-t-be-surrogate-school-system-20231120-p5elci.html">said</a> this week. “Because what [then] happens is everyone gets the diagnosis.”</p>
<p>Is autism “over diagnosed” in Australia due to the NDIS, or is it being better identified? </p>
<h2>What the data really shows</h2>
<p>Recently <a href="https://www.theage.com.au/politics/federal/the-unique-factor-that-could-explain-why-autism-rates-in-australia-are-growing-faster-than-the-global-average-20231108-p5eig4.html">reported</a> non-peer reviewed research suggests the NDIS has fuelled Australia’s diagnosis rates to be among the highest in the world at one in 25 children. But the same research reported Japan – with early identification and supports in place since the early 1990s – has similar rates.</p>
<p>It’s useful to look at the <a href="http://otarc.blogs.latrobe.edu.au/autism-prevalence-in-australia-what-we-know-so-far/">peer-reviewed</a> data available. A <a href="https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2789926">recent</a> screening study we conducted with 13,511 Victorian children aged one to 3.5 years found one in 31 (3.3%) were autistic. This finding was based on data collected between 2013–18 (before and during the rollout of the NDIS). </p>
<p>The <a href="https://www.thelancet.com/journals/lanepe/article/PIIS2666-7762(23)00045-5/fulltext">United Kingdom</a> reports a prevalence rate of one in 34, based on 2000–2018 data for 10- to 14-year-olds. </p>
<p>The United States <a href="https://www.cdc.gov/mmwr/volumes/72/ss/ss7202a1.htm?s_cid=ss7202a1_w">Centers for Disease Control and Prevention</a> report a 2020 prevalence rate of one in 36 children aged eight.</p>
<p>Before the full nationwide rollout of the NDIS, 2020 research based on the <a href="https://pubmed.ncbi.nlm.nih.gov/32124539/">Longitudinal Study of Australian Children</a> showed a prevalence rate of one in 23 (4.4%) in 12- to 13-year-olds – even higher than the recently reported paper claiming NDIS was driving up autism diagnosis rates. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/the-ndis-has-a-parent-problem-changes-could-involve-parents-more-in-disability-support-and-reduce-stress-212099">The NDIS has a parent problem. Changes could involve parents more in disability support and reduce stress</a>
</strong>
</em>
</p>
<hr>
<h2>We’re getting better at identification</h2>
<p>The <a href="https://pubmed.ncbi.nlm.nih.gov/32124539/">Longitudinal Study of Australian Children</a> also shows younger children (born 2003–04) have a higher autism prevalence (4.4%) than older children (2.6%; born between 1999–2000). Yet, younger children had fewer social, emotional and behaviour challenges than older children. These findings tell us we are getting better at identifying children with more subtle traits at earlier ages. This is leading <a href="https://link.springer.com/article/10.1007/s10803-017-3279-x">to better outcomes</a>.</p>
<p>There is growing awareness of the presentation of autistic people (<a href="https://www.yellowladybugs.com.au/">particularly girls, woman and gender-diverse people</a>) who have historically missed out on diagnosis in childhood due to a lack of understanding of their “<a href="https://autisticgirlsnetwork.org/wp-content/uploads/2022/11/Keeping-it-all-inside.pdf">internalised</a>” presentation, leading to “masking” and “<a href="https://link.springer.com/article/10.1007/s40489-020-00197-9">camouflaging</a>” their differences. They may do this until the demands of life exceed their capacity to cope, leading them to seek a diagnosis. </p>
<p>This has contributed to the overall percentage of autistic participants <a href="https://www.ndis.gov.au/about-us/publications/quarterly-reports/archived-quarterly-reports-2022-23">accessing the NDIS</a>.</p>
<h2>Diagnostic overshadowing</h2>
<p>Another reason for the rise of autism diagnosis is a phenomenon known as “<a href="http://www.intellectualdisability.info/changing-values/diagnostic-overshadowing-see-beyond-the-diagnosis">diagnostic overshadowing</a>”. This is a tendency to explain all differences in a person based on their primary diagnosis. </p>
<p>In the past, many autistic people were diagnosed only with intellectual disability, or misdiagnosed with intellectual disability. As knowledge of autism has improved, more people were correctly diagnosed as autistic, or as both autistic and having an intellectual disability. The result? A clear change in prevalence rates of these two disabilities. </p>
<p>A US <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6683759/">study</a> conducted between 2000 and 2014 found the trend of autism diagnosis was on the rise, while the diagnosis of intellectual disability had <a href="https://auc-word-edit.officeapps.live.com/we/Figure%201">declined</a>. If prevalence of autism was truly on the rise, rates of intellectual disability would remain static as rates of autism rose.</p>
<p>We see a similar trend of people accessing the NDIS between 2017 and 2023 based on NDIS <a href="https://www.ndis.gov.au/about-us/publications/quarterly-reports">data</a>. Autistic participants rose by 6% (29% to 35%) from 2017 to 2023, while participants with intellectual disability dropped by 20% (36% to 16%). </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/560648/original/file-20231121-4482-d1cauc.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="graph shows intellectual disability percentage falling over time and autism percentage growing" src="https://images.theconversation.com/files/560648/original/file-20231121-4482-d1cauc.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/560648/original/file-20231121-4482-d1cauc.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=284&fit=crop&dpr=1 600w, https://images.theconversation.com/files/560648/original/file-20231121-4482-d1cauc.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=284&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/560648/original/file-20231121-4482-d1cauc.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=284&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/560648/original/file-20231121-4482-d1cauc.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=357&fit=crop&dpr=1 754w, https://images.theconversation.com/files/560648/original/file-20231121-4482-d1cauc.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=357&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/560648/original/file-20231121-4482-d1cauc.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=357&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption"></span>
<span class="attribution"><span class="source">Compiled by authors from NDIS data</span>, <a class="license" href="http://creativecommons.org/licenses/by-sa/4.0/">CC BY-SA</a></span>
</figcaption>
</figure>
<p>This suggests we are not only correctly diagnosing autism as the primary disability, but we may also be reducing co-occuring disability that can significantly impact day-to-day life. This functional focus was the original intention of the NDIS and the purpose Shorten and <a href="https://youtu.be/IOAomqtXGGY?si=hz457CgBx82BWy-2">NDIS review co-chairs</a> have said they want to return to.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/IOAomqtXGGY?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Bruce Bonyhady says we need to get away from a system that has focused up to now on primary medical diagnosis rather than functional needs.</span></figcaption>
</figure>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/the-ndis-is-set-for-a-reboot-but-we-also-need-to-reform-disability-services-outside-the-scheme-204041">The NDIS is set for a reboot but we also need to reform disability services outside the scheme</a>
</strong>
</em>
</p>
<hr>
<h2>A diagnostic ticket to the NDIS</h2>
<p>Current eligibility to access the NDIS is based on permanent disability, which substantially impacts the individual’s everyday activity. (Children from birth to nine years old with any developmental concerns or differences can access the <a href="https://www.ndis.gov.au/understanding/families-and-carers/early-childhood-approach-children-younger-9#:%7E:text=It%20is%20about%20giving%20children,%2Dcentred%20and%20strengths%2Dbased.">Early Childhood Approach</a>, an arm of the NDIS based on needs not diagnosis.) </p>
<p>The National Disability Insurance Agency (the NDIA, which administers the scheme) currently interprets “severity” levels for autism from the <a href="https://www.psychiatry.org/psychiatrists/practice/dsm">diagnostic manual</a> to determine funding. Severity levels range from “requires support” (level one), to “requires very substantial support” (level three). But the diagnostic manual used by clinicians says: </p>
<blockquote>
<p>[…] descriptive severity categories should not be used to determine eligibility for and provision of services; these can only be developed at an individual level and through discussion of personal priorities and targets.</p>
</blockquote>
<p>This means NDIA <a href="https://ourguidelines.ndis.gov.au/home/becoming-participant/applying-ndis/list-conditions-are-likely-meet-disability-requirements">eligibility criteria</a> for the scheme excludes needed, meaningful, support for children receiving “level one” diagnoses. </p>
<p>As a result, some clinicians have been accused of “<a href="https://www.afr.com/policy/health-and-education/over-diagnosing-autism-in-children-does-them-a-great-disservice-20230418-p5d1ek#:%7E:text=Those%20with%20levels%20two%20and,risk%2C%E2%80%9D%20says%20Professor%20Jureidini.">manufacturing</a>” level two diagnosis and “<a href="https://www.smh.com.au/politics/federal/sharp-rise-more-than-8-per-cent-of-young-school-children-now-on-ndis-20230519-p5d9rc.html">rorting of the system”</a> to ensure NDIS eligibility. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/a-decade-on-the-ndis-has-had-triumphs-challenges-and-controversies-where-to-from-here-208463">A decade on, the NDIS has had triumphs, challenges and controversies. Where to from here?</a>
</strong>
</em>
</p>
<hr>
<h2>Challenges change over time</h2>
<p>NDIS access and funding should not be based on diagnostic levels; it must be based on individual needs. To make the fundamental shift Shorten and the NDIS review co-chairs are foreshadowing, access to the NDIS should not be <a href="https://theconversation.com/on-my-worst-day-how-the-ndis-fosters-a-deficit-mindset-and-why-that-should-change-208846">deficits based</a>. The NDIA will need to educate and train its staff in a holistic approach, focusing on what autistic people can achieve with appropriate supports in place.</p>
<p>If we invest in early supports, autistic children are less likely to require <a href="https://jamanetwork.com/journals/jamapediatrics/fullarticle/2784066">as many supports as they age</a>. This is a good thing for the financial sustainability of the NDIS, which was designed as an insurance scheme and not a welfare system. </p>
<p>Australia is at the forefront of <a href="http://otarc.blogs.latrobe.edu.au/tag/prevalence/">identifying</a> autism early, consequently improving children’s and <a href="https://link.springer.com/article/10.1007/s10803-023-05992-x">families’</a> quality of life. Our rates of early diagnosis should be celebrated, not demonised.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/on-my-worst-day-how-the-ndis-fosters-a-deficit-mindset-and-why-that-should-change-208846">'On my worst day ...' How the NDIS fosters a deficit mindset and why that should change</a>
</strong>
</em>
</p>
<hr>
<img src="https://counter.theconversation.com/content/217921/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Nancy Sadka receives funding from La Trobe University </span></em></p><p class="fine-print"><em><span>Josephine Barbaro receives funding from La Trobe University, the National Health and Medical Research Council (NHMRC), the UK National Institute for Health Research Global Health Research Units, and the Victorian Government Department of Families, Fairness and Housing and Department of Health and Human Services.</span></em></p>We’re getting better at early identification and adult diagnosis has contributed to NDIS numbers. But functional impairment is likely to be given greater emphasis in the NDIS reboot.Nancy Sadka, Research Fellow, Olga Tennison Autism Research Centre, La Trobe UniversityJosephine Barbaro, Associate Professor, Principal Research Fellow, Psychologist, La Trobe UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2164712023-11-14T18:06:28Z2023-11-14T18:06:28ZAutistic people experience loneliness far more acutely than neurotypical people – new research<figure><img src="https://images.theconversation.com/files/558608/original/file-20231109-21-q7xuk9.jpg?ixlib=rb-1.1.0&rect=53%2C0%2C5972%2C3593&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">New research debunks the stereotype that autistic people lack the motivation to form meaningful social connections.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/young-man-suffering-depression-social-anxiety-2252053059">KieferPix/Shutterstock</a></span></figcaption></figure><p>Autistic people are up to four times more likely to experience <a href="https://www.autism.org.uk/advice-and-guidance/topics/loneliness#:%7E:text=Autistic%20people%20are%20more%20likely,rewarding%20relationships%20in%20your%20life.">loneliness</a> than non-autistic people. </p>
<p>Despite enduring <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3329932/">stereotypes</a> that autistic people lack the desire for meaningful social connections, <a href="https://www.liebertpub.com/doi/10.1089/aut.2022.0062">new research</a> from my colleagues and I unveils the profound distress they experience due to loneliness. It also shows the unexpected role that differences in the ways individuals receive and interpret different stimuli through their senses – their “sensory processing” – may play in this phenomenon. </p>
<p>We combined two complementary studies that investigated autistic and non-autistic people’s experiences of loneliness, using different methods.</p>
<p>In the first study, autistic and non-autistic participants completed questionnaires measuring loneliness, anxiety, depression and sensory differences. We felt that the usual standardised loneliness questionnaires do not fully capture the important distinction between chosen solitude and distress caused by loneliness. </p>
<p>To address this, we added the additional question “How much does this upset you?” to each factor on the questionnaire to assess the level of distress caused by loneliness. Statistical analysis revealed how these factors related to each other and differed between the two groups. </p>
<p>In the second study, autistic participants discussed their experiences of loneliness in short, recorded conversations. We then identified common themes. </p>
<h2>Sensory differences and distress</h2>
<p>The results from the first study demonstrated a direct link between sensory processing differences and increased loneliness and poorer mental health in both autistic and non-autistic adults. </p>
<p>This association was particularly pronounced among autistic participants due to the differences in sensory processing and how they experience the environment around them. This was surprising, as the link between sensory processing differences and loneliness hasn’t been made before. </p>
<p>What’s more, autistic adults reported experiencing not only greater levels of loneliness but also more intense distress associated with it. This suggests that autistic individuals suffer more acutely from loneliness. This is on top of being more likely to experience it in the first place.</p>
<p>In the second study, autistic participants spoke about the intense pain of feeling lonely and socially isolated, while also needing to retreat into solitude to recover from over-stimulation. They expressed a deep desire for meaningful relationships with other people. </p>
<p>But they also described the barriers they faced in achieving this. These obstacles included difficulty connecting with non-autistic people, finding friends with shared interests, and feeling misunderstood and unaccepted by society.</p>
<p>One autistic participant described the difficulties she had faced in making friends as an adult: “I’m trying to reach out, I’m trying to find my people, but it all still feels a bit hopeless.”</p>
<p>Many autistic participants also described feeling overwhelmed in high-intensity social situations, such as being in large groups, around unfamiliar people, or in busy office environments. They needed time alone to recover afterwards. </p>
<p>However, they had a more positive experience of this type of chosen solitude compared with being forced to be alone. Additionally, having more access to quieter environments with less stimulation could reduce the amount of recovery time needed.</p>
<h2>Societal and environmental barriers</h2>
<p>In addition to the emotional distress of loneliness, many autistic people also cited practical barriers to social connection. These included financial constraints, a lack of affordable and accessible community spaces, and the difficulty of navigating busy and noisy urban environments.</p>
<p>Autistic people may be at heightened risk of financial hardship during the cost-of-living crisis, as they often face <a href="https://theconversation.com/dehumanising-policies-leave-autistic-people-struggling-to-access-health-education-and-housing-new-review-202997">barriers</a> to employment and benefits. They are also more likely to experience <a href="https://sensorystreet.uk/">sensory overload</a>, as they process sensory information differently. </p>
<p>For example, one autistic woman in her sixties described how she could see her aunt’s house from her living room window, but could not safely cross the busy road that separated them to visit her.</p>
<figure class="align-center ">
<img alt="A woman sitting down looks into the middle distance." src="https://images.theconversation.com/files/558644/original/file-20231109-24-wbjilb.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/558644/original/file-20231109-24-wbjilb.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/558644/original/file-20231109-24-wbjilb.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/558644/original/file-20231109-24-wbjilb.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/558644/original/file-20231109-24-wbjilb.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/558644/original/file-20231109-24-wbjilb.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/558644/original/file-20231109-24-wbjilb.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Many autistic people cited practical barriers to social connection.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/serious-older-50s-woman-looks-out-2146877297">fizkes/Shutterstock</a></span>
</figcaption>
</figure>
<h2>Doing things differently</h2>
<p>Our findings debunk the outdated stereotype that autistic people lack the motivation to form meaningful social connections. Instead, social environments often exclude people with higher levels of sensory differences. This can limit the opportunities for autistic people to socialise and form meaningful relationships. </p>
<p>Our research highlights the need to create <a href="https://www.ribaj.com/intelligence/sensory-impact-buildings-and-neurodiversity">more welcoming sensory environments</a> to reduce these barriers. Small adjustments to lighting, acoustics, décor and wayfinding, among other sensory factors, can significantly reduce the burden on people with sensory processing differences and open up more social spaces to them. </p>
<p>Concerted efforts from society as a whole – including town planners, employers, educators and owners of public social spaces – are needed to create spaces that consider the sensory needs of all neurotypes.</p><img src="https://counter.theconversation.com/content/216471/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Gemma L. Williams does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Autistic people are not only more likely to feel lonely but are also more likely to experience it more acutely than non-autistic people according to new research.Gemma L. Williams, Research Officer in Public Health, Swansea UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2119722023-11-09T14:15:03Z2023-11-09T14:15:03ZHow autistic parents feel about breastfeeding and the support they receive – new research<figure><img src="https://images.theconversation.com/files/550058/original/file-20230925-15-aytg7n.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C5020%2C3321&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Almost half the study's respondents found breastfeeding to be a positive experience most or all of the time. </span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/young-mother-breastfeeding-her-newborn-child-516261334">Lolostock/Shutterstock</a></span></figcaption></figure><p>Surprisingly little is still known about autism and breastfeeding. A few years ago, <a href="https://journals.sagepub.com/doi/full/10.1177/13623613221089374">we reviewed</a> all of the research evidence and found limited information about the experiences of autistic parents – beyond highlighting that the sensory differences when breastfeeding could be very challenging for them. We also found that communication by health professionals didn’t always meet the <a href="https://www.autisticuk.org/post/autistic-mothers-experiences-of-breast-and-formula-feeding-babies-what-does-the-evidence-s">needs</a> of autistic parents.</p>
<p>So, for our newly released <a href="https://doi.org/10.1111/mcn.13581">study</a>, we asked 152 autistic parents from across the UK about their breast- and formula-feeding experiences. Some 87% of those who breastfed were strongly motivated to keep breastfeeding even if they ran into difficulties, while only 54% of all the parents we interviewed used any infant formula. This is a substantially lower rate of formula use than we’d typically see in the UK, where <a href="https://doc.ukdataservice.ac.uk/doc/7281/mrdoc/pdf/7281_ifs-uk-2010_report.pdf">88% of babies</a> receive some infant formula during their first six months.</p>
<p>Almost half of our respondents found breastfeeding to be a positive or enjoyable experience most or all of the time. This included the experience of feeling bonded with their baby and enjoying learning about breastfeeding.</p>
<p>That said, many of these autistic parents described experiencing sensory difficulties, with touch-related issues being their most frequently reported challenge. These issues ranged from discomfort caused by “little hands” touching their skin, to pain from infants suckling, biting and “latching on” to the breast. </p>
<p>Some 10% of our participants expressed breastmilk all of the time. This is higher than we would expect in an average group of parents, as expressing milk for every feed is <a href="https://onlinelibrary.wiley.com/doi/10.1111/j.1365-2648.2012.06035.x">usually only done</a> when babies are premature or parents have returned to work. On the other hand, the feeling and sound of breast pumps could be unbearable for some of the parents we interviewed.</p>
<h2>Interoception</h2>
<p>Most people know about the five basic human senses: touch, sight, sound, smell and taste. But we also have three other senses that are just as important. The <a href="https://www.sciencedirect.com/topics/neuroscience/vestibular-system">vestibular system</a> helps us keep our balance and move around safely; <a href="https://www.sciencedirect.com/topics/neuroscience/proprioception#:%7E:text=Proprioception%20refers%20to%20the%20sense,have%20receptors%20involved%20in%20proprioception.">proprioception</a> lets us know how our muscles and joints are moving; and <a href="https://www.sciencedirect.com/topics/medicine-and-dentistry/interoception">interoception</a> tells us about what is happening inside our bodies, such as our heart rate, breathing and digestion.</p>
<p>Autistic people often have <a href="https://www.sciencedirect.com/science/article/abs/pii/S073657481630096X">different interoceptive experiences</a> to non-autistic people – such as either not knowing or being acutely aware that they are hungry, thirsty or need the toilet. </p>
<p>With regard to breastfeeding, 41% of our participants who breastfed told us that their interoceptive experiences relating to the <a href="https://www.breastmilkcounts.com/breastfeeding-basics/the-let-down/">milk let-down reflex</a> (the response from your body that causes breastmilk to flow) was uncomfortable or painful always or most of the time. This included having “a feeling of dread” or the let-down reflex feeling odd in some way. One of our parents noted that “it felt like I had an old-fashioned telephone ringing in my breasts”.</p>
<h2>Adaptation strategies</h2>
<p>Whether our parents breast- or formula-fed, the intensity of babies’ frequent feeding could be overwhelming – a <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1468-2397.2009.00684.x">well-known issue</a> among the general population of parents too. However, for autistic parents, carefully developed strategies to stay regulated and de-stress, such as going for a walk or watching an episode of a favourite TV show, could be disrupted by the busy routine of new parenthood.</p>
<figure class="align-left ">
<img alt="A woman looks at her phone while breastfeeding her baby." src="https://images.theconversation.com/files/550067/original/file-20230925-25-cnncei.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/550067/original/file-20230925-25-cnncei.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=899&fit=crop&dpr=1 600w, https://images.theconversation.com/files/550067/original/file-20230925-25-cnncei.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=899&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/550067/original/file-20230925-25-cnncei.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=899&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/550067/original/file-20230925-25-cnncei.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1130&fit=crop&dpr=1 754w, https://images.theconversation.com/files/550067/original/file-20230925-25-cnncei.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1130&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/550067/original/file-20230925-25-cnncei.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1130&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption"></span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/portrait-young-confident-woman-modern-living-2049690128">BAZA Production/Shutterstock</a></span>
</figcaption>
</figure>
<p>The parents in our study had done a lot of problem-solving to reduce the sensory challenges of feeding their babies. This included adapting their clothing and distracting themselves during feeding by looking at a mobile phone, for example. </p>
<p>There is evidence that bonding is <a href="https://onlinelibrary.wiley.com/doi/10.1111/nhs.12918">not negatively impacted</a> by the use of smartphones when breastfeeding in a general population. So, these types of distraction should be encouraged for all parents who are finding breastfeeding hard but want to continue doing so.</p>
<p>While 76% of our parents had received some form of breastfeeding support, nearly three-quarters of these parents (71%) still reported feeling unsupported. Issues included there not being enough breastfeeding support available, and health professionals providing conflicting information – concerns that also found in the accounts of <a href="https://onlinelibrary.wiley.com/doi/full/10.1111/mcn.13355">non-autistic parents</a>.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/dehumanising-policies-leave-autistic-people-struggling-to-access-health-education-and-housing-new-review-202997">'Dehumanising policies' leave autistic people struggling to access health, education and housing – new review</a>
</strong>
</em>
</p>
<hr>
<p>It also appears that those supporting infant feeding, such as midwives and health visitors, did not have a good understanding of autistic communication. For example, some parents felt they were not listened to or that their concerns were dismissed.</p>
<p>Furthermore, some parents felt that staff did not appear to understand the specific sensory and interoceptive differences that could affect autistic people while breastfeeding.</p>
<h2>Room for improvement</h2>
<p>Overall, our study suggests there is a need for better understanding of autism among those providing infant feeding support. The national autism training <a href="https://www.annafreud.org/training/national-autism-trainer-programme/">programme</a>, which is developed and delivered by autistic adults, aims to improve this situation across England. Ideally, similar programmes should be implemented in the other UK nations.</p>
<p>A second area for improvement is for autistic parents, their partners and other people supporting them to be aware of potential feeding issues in advance, so they can be better prepared. Our project provides a <a href="https://www.youtube.com/@AutismMenstruationToMenopause/videos">suite of videos</a>, designed and created by autistic health professionals and parents, to help provide this information in an autism-friendly way.</p><img src="https://counter.theconversation.com/content/211972/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Aimee Grant receives funding from UKRI and the Wellcome Trust. She is a non-executive director of Disability Wales. We wish to thank Prof Amy Brown, who was also part of the research team.</span></em></p><p class="fine-print"><em><span>Kathryn Williams receives funding for her PhD studentship from the Economic and Social Research Council. She is affiliated with Autistic UK CIC, where she is a voluntary non-executive director.</span></em></p><p class="fine-print"><em><span>Catrin Griffiths does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>New research sheds light on how autism affects how we feed our babies, and vice versa.Aimee Grant, Senior Lecturer in Public Health and Wellcome Trust Career Development Fellow, Swansea UniversityCatrin Griffiths, Research Officer, Swansea UniversityKathryn Williams, PhD Candidate, Cardiff UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2104922023-10-23T14:58:11Z2023-10-23T14:58:11ZGreta Thunberg is far from the only neurodivergent climate activist – many who see the world differently also want to change it<figure><img src="https://images.theconversation.com/files/554314/original/file-20231017-15-wzhcci.jpg?ixlib=rb-1.1.0&rect=31%2C31%2C5241%2C3731&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/stockholm-sweden-september-22-2023-activist-2365461669">Liv Oeian/Shutterstock</a></span></figcaption></figure><p>Amid her calls for governments to act on climate change, Swedish activist Greta Thunberg has spoken openly about her Asperger’s syndrome and obsessive-compulsive disorder. She is not the only environmental campaigner to speak about being neurodivergent (having a neurological condition or disability) – something Thunberg describes as her <a href="https://www.theguardian.com/environment/2019/sep/02/greta-thunberg-responds-to-aspergers-critics-its-a-superpower">“superpower”</a>.</p>
<p>In the UK, naturalists <a href="https://www.bigissue.com/culture/tv/chris-packham-my-younger-self-would-be-my-biggest-critic/?fbclid=IwAR1SF2vQnNoIz4jq9zd2PbSxw8t-UeKmyZNPgUJvwd8vj6DBGtPQwmMXf9U_aem_AfcUn-1tm2y8Pl-JgkeEbumbQmTLQcB0N8T-3txufumBB5CGWgPh_TkQNX-hsPUeRII">Chris Packham</a> and <a href="https://www.belfasttelegraph.co.uk/life/features/co-down-author-dara-mcanulty-shares-advice-for-autistic-students-who-are-heading-off-to-uni/a1546012443.html">Dara McAnulty</a> have both discussed their autism. Packham has said that it has been <a href="https://www.birminghammail.co.uk/news/showbiz-tv/chris-packhams-autism-diagnosis-appears-26233872">“enormously beneficial”</a> to his career.</p>
<p>In my <a href="https://pureadmin.qub.ac.uk/ws/portalfiles/portal/473453067/Louise_Taylor_Final_PhD_Thesis_June_2023.pdf">doctoral research</a>, I interviewed 23 youth activists, conservation workers and environmentalists to examine the link between nature experiences and mental health in an era of climate breakdown. My findings shed light on the motivations and intentions of neurodivergent people who work in the environmental and conservation sector, as well as those who are drawn to climate activism.</p>
<p>Many of my participants had been diagnosed with mental health, psychiatric and neurological conditions including autism, ADHD and bipolar disorder. They reported finding community and a sense of purpose in the environmental activism movement and through a <a href="https://pureadmin.qub.ac.uk/ws/portalfiles/portal/473453067/Louise_Taylor_Final_PhD_Thesis_June_2023.pdf">connection with nature</a>.</p>
<h2>Autistic traits and activism</h2>
<p>In a recent <a href="https://uk.style.yahoo.com/chris-packham-autism-nobody-difficulties-000100111.html">BBC documentary</a> about his life with autism, Packham said that some of the campaigners he works with “either are [autistic] or they have traits of autism, with an aggravated sense of injustice and a deep-rooted desire to tell the absolute truth”. </p>
<p>This, he said, can be an asset during turbulent times: “Autistic people have an enormous amount to offer in times of crisis – sometimes clear thinking, clear speaking, can be enormously beneficial.”</p>
<p>Links between autistic traits and environmentalism are still being studied. <a href="https://www.sciencedirect.com/science/article/abs/pii/S0272494421001018">Some research</a> has suggested that mental health conditions may present barriers to pro-environmental action, for example because of high costs or difficulty in sustaining lifestyle changes. </p>
<p>But for many neurodivergent people, their condition can encourage their activism. As a neurodivergent therapist and researcher, I have found that many of the people I work with are sensitive to external events and situations. People with autism or ADHD often report experiencing the world more intensely than those who are considered <a href="https://www.medicalnewstoday.com/articles/what-does-neurotypical-mean">neurotypical</a>. Some say this heightened sensitivity applies to pain, suffering and injustices – making them likely to take action to manage the discomfort they experience. As one of the young activists I interviewed said:</p>
<blockquote>
<p>I suffer from depression and have mental health issues, and some of that is caused by the climate … I just really want to get this solved … as the days go on I feel more and more, I don’t know, hopeless at times. But I still want to go on strike.</p>
</blockquote>
<p>Certain types of autism involve <a href="https://idontmind.com/journal/what-is-hyperfixation-and-how-can-you-manage-it">hyperfixations</a> – specialised areas of knowledge and interest that border on obsession. Many neurodivergent people have a thirst for knowledge and desire to learn everything on a subject. When this is applied to science and climate, it can drive a passion for activism. </p>
<h2>Challenging the status quo</h2>
<p>Autistic people often struggle to adhere to or understand social and cultural norms. This can put them at greater risk of social ridicule, or being described as <a href="https://kar.kent.ac.uk/88088/1/MILTON%20Double%20empathy%20problem%20frym.pdf">rude or antisocial</a>. Along with this is often an inability to comprehend or respect hierarchy and authority. These traits may also be a strength in activism, where directly criticising and challenging powerful people and political systems can be a daunting prospect.</p>
<p>Many neurodivergent people believe strongly in <a href="https://www.psy-ed.com/wpblog/child-obsessed-with-fairness/">equality and fairness</a>, and reject systems where people are not all treated equally. </p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/-1aTVfKstrs?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
</figure>
<p>People on the spectrum may experience extreme psychological and emotional distress when demands are placed upon them that they do not understand or agree with. In schools, neurodivergent children need special assistance to adhere to the requirements of the <a href="https://inews.co.uk/inews-lifestyle/traumatised-children-refusing-go-schol-parents-paying-price-2428811?ico=in-line_link">education system</a>.</p>
<p>Many people on the autism spectrum have heightened levels of empathy and compassion for those who are <a href="https://www.steadyhealth.com/articles/autism-and-hyper-empathy-syndrome-adults-with-aspergers-and-too-much-empathy">suffering or in danger</a>. Similarly, many environmentalists have an unshakeable belief and desire to live a good life and believe in equality and fairness. For both of these groups, a strong sense of justice can be a motivator for how they live and behave. </p>
<h2>Combating climate anxiety</h2>
<p>As awareness of neurodivergence increases, more people, and notably children, are being diagnosed with conditions such as <a href="https://acamh.onlinelibrary.wiley.com/doi/pdf/10.1111/jcpp.13505">autism and ADHD</a>. In Northern Ireland, where I conducted my research, the rates of autism diagnoses among school-aged children increased <a href="https://www.bbc.co.uk/news/uk-northern-ireland-57189519">from 1.2% in 2009 to 4.5 % in 2021</a>.</p>
<p>Neurodivergent people are often more vulnerable and susceptible to <a href="https://www.verywellhealth.com/anxiety-and-autism-4428086">experiencing mental illnesses</a>. This can include social anxiety, depression as well as climate anxiety. </p>
<p>The people I spoke to in my research indicated that activism can be an antidote to feelings of distress, discomfort and hopelessness. Activism and pro-environmental actions were essential coping techniques for those who cared for the environment and non-human world. It helped people feel less helpless, giving them a sense of purpose and hope for the future. </p>
<p>As Thunberg has said of herself, <a href="https://people.com/human-interest/greta-thunberg-on-how-activism-helped-her-overcome-depression/">activism is a way to stay well</a> in a time of climate and ecological breakdown. </p>
<p>Thunberg has achieved international recognition and acclaim for her work. Like her, many other neurodivergent climate activists are acting not out of desire for fame, but because they have a strong sense of justice and they believe it is the right thing to do. We can all learn from the many young neurodivergent people who, in spite of their conditions (or perhaps because of them), are striving to make the world a better place.</p>
<hr>
<figure class="align-right ">
<img alt="Imagine weekly climate newsletter" src="https://images.theconversation.com/files/434988/original/file-20211201-21-13avx6y.png?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/434988/original/file-20211201-21-13avx6y.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=600&fit=crop&dpr=1 600w, https://images.theconversation.com/files/434988/original/file-20211201-21-13avx6y.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=600&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/434988/original/file-20211201-21-13avx6y.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=600&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/434988/original/file-20211201-21-13avx6y.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=754&fit=crop&dpr=1 754w, https://images.theconversation.com/files/434988/original/file-20211201-21-13avx6y.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=754&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/434988/original/file-20211201-21-13avx6y.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=754&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption"></span>
</figcaption>
</figure>
<p><strong><em>Don’t have time to read about climate change as much as you’d like?</em></strong>
<br><em><a href="https://theconversation.com/uk/newsletters/imagine-57?utm_source=TCUK&utm_medium=linkback&utm_campaign=Imagine&utm_content=DontHaveTimeTop">Get a weekly roundup in your inbox instead.</a> Every Wednesday, The Conversation’s environment editor writes Imagine, a short email that goes a little deeper into just one climate issue. <a href="https://theconversation.com/uk/newsletters/imagine-57?utm_source=TCUK&utm_medium=linkback&utm_campaign=Imagine&utm_content=DontHaveTimeBottom">Join the 20,000+ readers who’ve subscribed so far.</a></em></p>
<hr><img src="https://counter.theconversation.com/content/210492/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Dr Louise Taylor works as a Neurodivergent Therapist and Consultant. </span></em></p>Activists with autism, bipolar disorder and other conditions spoke about finding purpose in environmental activism.Louise Taylor, Early Career Researcher and Ecotherapist, Queen's University BelfastLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2125612023-09-21T15:09:14Z2023-09-21T15:09:14ZLike many women, I didn’t know I was autistic until adulthood – how late diagnosis can hurt mental health and self image<figure><img src="https://images.theconversation.com/files/548284/original/file-20230914-26-cuvniq.jpg?ixlib=rb-1.1.0&rect=17%2C8%2C5660%2C3770&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/two-women-having-lunch-restaurant-2281669593">Dagerotip/Shutterstock</a></span></figcaption></figure><p>For many women, adult diagnoses of autism are <a href="https://link.springer.com/article/10.1007/s40489-023-00356-8">“a light in the darkness”</a>, an epiphany of self-understanding. My “lightbulb moment” came in my late 20s. “They thought you were autistic,” my mum mused when I told her I was embarking on an academic career in autism research. </p>
<p>As a child, I was painfully aware of being different. The adults and the children around me had noticed my strangeness, my inability to fit in. It turned out that autism had been suggested to my mother – but then dismissed by a child psychiatrist. I didn’t fit what was known about autism. Although socially gauche, I’d mastered eye contact and was fairly eloquent.</p>
<p>A few years after my mum had made that off-the-cuff comment, I was re-evaluating my life in the context of a shiny new diagnosis. </p>
<p>Researchers are learning more and more about the way autism differs in people of different sexes and genders. As they do so, the lights are coming on for more of us who’ve felt <a href="https://journals.sagepub.com/doi/full/10.1177/13623613211050694?casa_token=2iv1aXVctg4AAAAA%3AN6rzwW4bELYF363Mu1_ealfOdDbSAxrfi2VFSWS6VKYtgJKUYY2bu4os1YyizyyzpnoclCQkjpWg">lost in the world</a>. </p>
<h2>The female face of autism</h2>
<p>There is no one type of autistic person. The key features of autism – differences in the way we think, communicate and interact with others – show up in more diverse and subtle ways than the limited examples suggested by the diagnostic criteria. This is often true in autistic girls. </p>
<hr>
<figure class="align-right ">
<img alt="" src="https://images.theconversation.com/files/542294/original/file-20230811-4652-hn8w80.png?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/542294/original/file-20230811-4652-hn8w80.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=600&fit=crop&dpr=1 600w, https://images.theconversation.com/files/542294/original/file-20230811-4652-hn8w80.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=600&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/542294/original/file-20230811-4652-hn8w80.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=600&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/542294/original/file-20230811-4652-hn8w80.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=754&fit=crop&dpr=1 754w, https://images.theconversation.com/files/542294/original/file-20230811-4652-hn8w80.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=754&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/542294/original/file-20230811-4652-hn8w80.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=754&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption"></span>
</figcaption>
</figure>
<p><em>This article is part of <a href="https://theconversation.com/uk/topics/womens-health-matters-143335">Women’s Health Matters</a>, a series about the health and wellbeing of women and girls around the world. From menopause to miscarriage, pleasure to pain the articles in this series will delve into the full spectrum of women’s health issues to provide valuable information, insights and resources for women of all ages.</em></p>
<p><em>You may be interested in:</em></p>
<p><em><a href="https://theconversation.com/women-still-feel-like-they-arent-listened-to-when-they-give-birth-heres-what-could-help-change-things-206815">Women still feel like they aren’t listened to when they give birth – here’s what could help change things</a></em></p>
<p><em><a href="https://theconversation.com/birth-trauma-is-a-growing-problem-experiencing-it-myself-revealed-how-few-people-understand-it-209634">Birth trauma is a growing problem — experiencing it myself revealed how few people understand it</a></em></p>
<p><em><a href="https://theconversation.com/science-experiments-traditionally-only-used-male-mice-heres-why-thats-a-problem-for-womens-health-205963">Science experiments traditionally only used male mice – here’s why that’s a problem for women’s health</a></em></p>
<hr>
<p>While they struggle with social understanding, many autistic girls are adept mimics of the social behaviour of other people. In the way they speak and the things they talk about, they are <a href="https://molecularautism.biomedcentral.com/articles/10.1186/s13229-019-0268-2">more similar</a> to neurotypical children than autistic boys are. This may explain why, on first impression, people tend to <a href="https://molecularautism.biomedcentral.com/articles/10.1186/s13229-020-00336-3">underestimate autistic girls’ difficulties</a>. </p>
<p>In comparison to autistic boys, the conversation of autistic girls tends to be more <a href="https://link.springer.com/article/10.1186/s13229-021-00483-1">social in nature</a>, focusing more on the people and friendship groups around them. Their interests tend to be <a href="https://link.springer.com/article/10.1007/s10803-018-3838-9">more social</a>, involving fictional characters, animals or celebrities rather than non-living objects. Tellingly, they express greater <a href="https://link.springer.com/article/10.1186/s13229-021-00483-1">longing for the friendships and relationships</a> which often elude them. </p>
<p>As they grow, some girls learn scripts to use in social situations, and develop a <a href="https://journals.sagepub.com/doi/full/10.1177/13623613211026754">passive way of behaving</a> with others that focuses on making the other person feel comfortable. Many autistic girls and women engage in this kind of <a href="https://journals.sagepub.com/doi/pdf/10.1177/1362361320912147?casa_token=RHj77aoEGOsAAAAA:hfYeRS89PP4pJeXriYZRVfQOdGIunPJVETGF8C_wTseFnFPIn2wCR8A-w5OgHY0tQxtSS4GSIbhn">“social camouflaging” constantly</a> in order to seem acceptable to others.</p>
<p>The subtleties of autism in girls mean that they’re <a href="https://www.ingentaconnect.com/content/wk/yco/2022/00000035/00000002/art00003">diagnosed significantly later</a> than boys. In part, this reflects <a href="https://link.springer.com/article/10.1007/s40489-020-00225-8?wt_mc=Internal.Event.1.SEM.ArticleAuthorOnlineFirst&utm_source=ArticleAuthorOnlineFirst&utm_medium=email&utm_content=AA_en_06082018&ArticleAuthorOnlineFirst_20201030&error=cookies_not_supported&code=c240a368-71e6-4971-80ee-93ca04ac4302">lack of awareness in the professionals</a> who typically signpost children to autism services. However, others will be passed over because diagnostic assessment tools are <a href="https://link.springer.com/article/10.1007/s10803-022-05566-3">less sensitive to autism in girls</a> with cognitive abilities in the normal range.</p>
<h2>The price of being overlooked</h2>
<p>Undiagnosed autistic people are often painfully aware of their inability to fit in and to do the things that others do easily. If no one gives you an explanation, you’re left to find one yourself. </p>
<p>I knew as a teenager that I must be fundamentally bad, since I was bullied and had no friends at school. Autistic people I’ve worked with <a href="https://www.scienceonthespectrum.net/">in my research</a> have similarly <a href="https://bpspsychub.onlinelibrary.wiley.com/doi/pdf/10.1111/bjhp.12477">blamed themselves</a> for a lifetime of struggling and being abused, pinning these things on personal failings. </p>
<figure class="align-center ">
<img alt="Woman looking sadly out of window." src="https://images.theconversation.com/files/548299/original/file-20230914-29-bpjwfq.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/548299/original/file-20230914-29-bpjwfq.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=316&fit=crop&dpr=1 600w, https://images.theconversation.com/files/548299/original/file-20230914-29-bpjwfq.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=316&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/548299/original/file-20230914-29-bpjwfq.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=316&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/548299/original/file-20230914-29-bpjwfq.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=398&fit=crop&dpr=1 754w, https://images.theconversation.com/files/548299/original/file-20230914-29-bpjwfq.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=398&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/548299/original/file-20230914-29-bpjwfq.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=398&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Undiagnosed autism can lead to mental health struggles.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/older-black-woman-mournfully-looks-out-570396466">Rocketclips, Inc./Shutterstock</a></span>
</figcaption>
</figure>
<p>Across research studies, we late-diagnosed autistics are that societal subgroup with a history of academic struggles, employment problems, mental illness and relationship breakdowns. Our self-narratives are ones of <a href="https://link.springer.com/article/10.1007/s40489-023-00356-8">inadequacy and failure</a>. </p>
<p>Research has found that autistic girls and women have <a href="https://jamanetwork.com/journals/jamapsychiatry/article-abstract/2797528">poorer mental health</a> than autistic men. So are people who are <a href="https://onlinelibrary.wiley.com/doi/full/10.1002/aur.2808">diagnosed later in life</a> compared to those diagnosed when young. These two facts are almost certainly interrelated. Autistic children who grow up without a diagnosis are unlikely to receive <a href="https://acamh.onlinelibrary.wiley.com/doi/full/10.1111/jcpp.13587">appropriate support</a>. What’s more, they’re less likely to be viewed with compassion when they struggle. </p>
<p>Recognition of autism in girls and women may come at a crisis point. For some, this occurs in the pubertal chaos and complex social world of adolescence, where rates of anxiety and depression climb steeply <a href="https://www.sciencedirect.com/science/article/abs/pii/S0890856715000775?casa_token=j5KM1naWE-kAAAAA:TY3VUvek7nWp0qul1rG8zOou8g1nwd2fp1PG4UM0jCMzqDpPAm_qO-oT5V5kUHxAjFC6yqFCiA">in autistic girls</a>. For some, it happens in the world-rocking <a href="https://bpspsychub.onlinelibrary.wiley.com/doi/pdf/10.1111/bjhp.12477">turmoil of menopause</a>, which appears to derail the coping skills and social camouflage that undiagnosed people rely on. </p>
<p>For some, it never happens. <a href="https://www.cambridge.org/core/journals/the-british-journal-of-psychiatry/article/autism-and-autistic-traits-in-those-who-died-by-suicide-in-england/04367C4DD9D8B4B3375A0D25C4764A54">Undiagnosed autistic people</a> are believed to constitute a high number of suicide deaths.</p>
<h2>Further challenges</h2>
<p>Beyond diagnosis, there are other ways that autistic girls and women face greater challenges than boys and men. While women generally suffer higher rates of sexual abuse, this risk is <a href="https://www.sciencedirect.com/science/article/pii/S1750946721001410?casa_token=rI9p6dBDKycAAAAA:SMaQE9x2Y3WcK84JVnFTsEf6162xgpxM0jPbm-I9KVcZDXhf1fmiwX7SvJX_dGvJE5o-VCwXZQ">even higher for autistic women</a>. </p>
<p>Autistic women often find their difficulties are poorly understood by employers, and must also contend with <a href="https://www.tandfonline.com/doi/full/10.1080/09687599.2021.1971065?casa_token=_KP7IGl2jlIAAAAA%3Agffu9O6cbE-sGkeyKWEiZUiw9j4HVwk_xwO4u_4XU_2cDmaJW1RpfjPj_GU_ylW3-w2spdKQkfSm">gendered pressures</a> to perform emotional labour at work – taking on the unpaid and implicit responsibility to look after the emotions of others – or face damage to their reputation.</p>
<p>Perhaps unsurprisingly, autistic gender disparities in <a href="https://link.springer.com/article/10.1186/s13229-020-00380-z">stress-related illnesses</a> and <a href="https://molecularautism.biomedcentral.com/articles/10.1186/s13229-023-00544-7">risk of suicide</a> are stark. Despite this, autistic women still face <a href="https://www.sciencedirect.com/science/article/pii/S1750946722000034?casa_token=nDnmpw3Rfj4AAAAA:Te7XPX3JEcU_pJU7VzEZmyrQWn6FYuCKlgBix3mxhJPEL4cct4Em57umuoYtIAagYxriwmzGLA#bib0175">greater barriers to accessing help</a>.</p>
<p>It’s uncertain to what extent these disparities can be traced back to the fundamental fact that autism is poorly understood and under-catered for in women and people of minority sexes and genders. </p>
<p>What we do know is that early diagnosis seems crucial for girls to grow up with <a href="https://journals.sagepub.com/doi/full/10.1177/13623613221086700?casa_token=cExwEslb-xUAAAAA%3A8bRTXQkV-RAmfgvN8_HhxPQZs5qqkGbLdwhrNfIHju8ioxf-B5EgOvmRMmmQMyrJYGz3swamxqgG">positive self-image</a> and <a href="https://www.sciencedirect.com/science/article/pii/S175094672300034X?casa_token=S3F4OArnO7AAAAAA:1jo_30JFKrQj0UTbVtvj05VIN123h40XUQTp-6iOOhj_OSRF2qvzm3HcV57CB8mt6SjqQadlkA">lower risk of mental illness</a>. </p>
<p>For we lucky women who got there in the end, a discovered autistic identity can be a <a href="https://link.springer.com/article/10.1007/s40489-023-00356-8">life-changing gift</a>. Finding ourselves means finding each other, release from self-blame and a <a href="https://journals.sagepub.com/doi/full/10.1177/1362361320908976">new sense of belonging</a>.</p><img src="https://counter.theconversation.com/content/212561/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Rachel Moseley does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Autistic girls tend to be diagnosed significantly later than boys,Rachel Moseley, Principle Academic in Psychology, Bournemouth UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2077452023-09-06T15:47:37Z2023-09-06T15:47:37ZNo evidence to show whether autism health passports are effective – new review<p><a href="https://www.nhsemployers.org/publications/nhs-health-passport">Health passports</a> were developed to help patients better communicate their needs with medical staff by allowing people to record details about their disability or health condition. They are sometimes known as a communication passport, healthcare passport or a hospital passport and can be digital or on paper. </p>
<p>Autism health passports were specifically designed with the aim of achieving more equitable access to healthcare for <a href="https://www.skillsforhealth.org.uk/info-hub/learning-disability-and-autism-frameworks-2019/">autistic people</a>. But how effectively do they achieve this? </p>
<p><a href="https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0279214">We reviewed</a> the evidence to see if they met their <a href="https://www.nice.org.uk/guidance/cg142/chapter/Recommendations">aims</a>. The literature we found tended to focus on describing the passports rather than evaluating their effectiveness.</p>
<p><a href="https://www.cdc.gov/ncbddd/autism/data.html">Around 3%</a> of the population is estimated to be autistic and autistic people experience the world differently. We have sensory, social and communication differences. We also often have co-occurring conditions such as <a href="https://www.mdpi.com/2075-4426/10/4/260">hypermobility</a>, <a href="https://www.sciencedirect.com/science/article/pii/S1525505019304949">epilepsy</a> and <a href="https://link.springer.com/article/10.1007/s11920-019-1020-5">ADHD</a>.</p>
<p><a href="https://www.legislation.gov.uk/ukpga/2010/15/contents">The Equality Act of 2010</a> states that government services – including healthcare – have a duty to provide “reasonable adjustments” for autistic people. This means organisations must make changes to how they provide their services to remove any social or environmental barriers. </p>
<p>Despite this, health services are often less accessible for autistic people. This is because such environments can include bright lights and lots of background noise which may cause physical pain and brain fog. Also, health professionals don’t always understand enough about autism to know how to communicate effectively with autistic patients.</p>
<p>This can lead to negative experiences and even <a href="http://dx.doi.org/10.1136/bmjopen-2021-056904">early death</a> for autistic people. Autistic people have reported concerns about being misunderstood or facing discrimination when they ask for medical <a href="https://doi.org/10.1177/1362361318811290">support</a>.</p>
<p>Autism health passports were introduced to overcome such challenges. For example, the “<a href="https://www.autism.org.uk/advice-and-guidance/topics/physical-health/my-health-passport">my health passport</a>” was developed in the UK <a href="https://www.nursingtimes.net/roles/learning-disability-nurses/passport-aims-to-help-autistic-patients-communicate-with-nurses-17-07-2014/">in 2014</a> by Baroness Angela Browning in collaboration with the National Autistic Society. There are other autism health passports from different organisations too.</p>
<p>Health passports have been <a href="https://www.skillsforhealth.org.uk/info-hub/learning-disability-and-autism-frameworks-2019/">endorsed</a> by the UK government, which is responsible for health in England. Using a health passport is also recommended as <a href="http://www.nice.org.uk/guidance/cg142">best practice</a> by the National Institute for Health and Care Excellence.</p>
<p>Our review identified all studies from across the globe which focused on autism health passports for people over the age of 16. We identified 13 sources in our review, of mixed quality. Four of which were not empirical and four were based in the UK.</p>
<p>We discovered that almost no information exists about whether autism health passports have achieved their aims. The studies we reviewed included information about the contents of the health passports, such as the person’s name, date of birth and communication needs. </p>
<p>But they did not say how they were supposed to be used in appointments, or include information such as who should fill out the passport, for example. What’s more, most of them did not test if the passports were effective. </p>
<p>For this reason, it is not possible to determine whether autism health passports help autistic people better access healthcare. </p>
<h2>Barriers</h2>
<p>Besides, there are already many societal, environmental and interpersonal barriers which prevent autism health passports from working effectively. </p>
<p>The general understanding of autism in society tends to be outdated, often limited to viewing it as a medical condition. Non-autistic brains are often considered as “the norm” while other types of brains can be viewed <a href="https://doi.org/10.1111/josp.12456">negatively</a> by the general population. </p>
<p>Viewing autism as a medical condition can <a href="https://doi.org/10.1177/1358229118820742">stigmatise</a> autistic people and impacts how many non-autistic people – including health professionals – engage with autistic people. </p>
<p>Many autistic people prefer the social model of disability instead. This states that society creates disability through a range of barriers that could be, but are not, removed. Autism is also an important part of some autistic people’s <a href="https://doi.org/10.1080/09687599.2021.1877117">identity</a>. </p>
<figure class="align-center ">
<img alt="An infographic displaying information about autism health passports" src="https://images.theconversation.com/files/539921/original/file-20230728-21-j6pxbd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/539921/original/file-20230728-21-j6pxbd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=426&fit=crop&dpr=1 600w, https://images.theconversation.com/files/539921/original/file-20230728-21-j6pxbd.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=426&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/539921/original/file-20230728-21-j6pxbd.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=426&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/539921/original/file-20230728-21-j6pxbd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=535&fit=crop&dpr=1 754w, https://images.theconversation.com/files/539921/original/file-20230728-21-j6pxbd.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=535&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/539921/original/file-20230728-21-j6pxbd.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=535&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">The barriers which need to be dismantled to ensure health passports can work.</span>
<span class="attribution"><span class="source">Rebecca Ellis</span>, <span class="license">Author provided</span></span>
</figcaption>
</figure>
<p>Staff who have not received autism training may be unaware of the adaptations needed to make healthcare more accessible. They may also not be aware of the co-occurring conditions that are often present alongside autism. </p>
<p>And due to staff and resource shortages, even with good knowledge of autism, health professionals may not have time to read additional materials such as an autism health passport.</p>
<h2>How to make positive changes</h2>
<p>Environmental changes are needed to provide better care for autistic people, because hospitals can be fast-paced and overwhelming places. Patients may have to move between areas of a large, often confusing, building and work with a number of different professionals, with varying levels of neurodiversity-affirming training. </p>
<p>This situation could be improved by using quiet spaces and assigning appropriately trained key workers to autistic patients. We do not think that “bolt on” tools like autism health passports are enough to create meaningful change in otherwise inaccessible health services. </p>
<p>A service redesign is necessary to meet autistic needs. Whether or not a tool such as a health passport can positively influence an autistic person’s experiences of healthcare is dependent on making wider changes to services.</p>
<p>Such initiatives should also be co-designed with autistic people to give them the greatest chance of being effective. By improving services in this way, they could meet the needs of other marginalised groups too.</p><img src="https://counter.theconversation.com/content/207745/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Rebecca Ellis received Health and Care Research Wales funding for their PhD. </span></em></p><p class="fine-print"><em><span>Aimee Grant receives funding from the Wellcome Trust, the Medical Research Council and the Research Wales Innovation Fund (part of HEFCW). </span></em></p>Autism health passports are a tool designed to help autistic people access healthcare more easily.Rebecca Ellis, Assistant researcher in Public Health, Swansea UniversityAimee Grant, Senior Lecturer in Public Health and Wellcome Trust Career Development Fellow, Swansea UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2114172023-08-28T20:03:47Z2023-08-28T20:03:47ZTranscranial magnetic stimulation can treat depression. Developing research suggests it could also help autism, ADHD and OCD<p>Since the start of the COVID pandemic, there has been more attention given to problems of mental ill-health including depression <a href="https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(22)01328-9/fulltext">than ever before</a>. A new therapeutic option, especially for depression, transcranial magnetic stimulation, is slowly helping to address some of these considerable unmet needs in our community. </p>
<p>Research is also exploring the use of transcranial magnetic stimulation in many other conditions, including obsessive compulsive disorder, autism, attention deficit hyperactivity disorder, chronic pain and perhaps to slow the progression of dementia symptoms.</p>
<p>What do we know so far about this emerging form of treatment? And is it living up to its promise for people with depression?</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/treating-mental-illness-with-electricity-marries-old-ideas-with-modern-tech-and-understanding-of-the-brain-podcast-195071">Treating mental illness with electricity marries old ideas with modern tech and understanding of the brain – podcast</a>
</strong>
</em>
</p>
<hr>
<h2>How does it work and who’s getting it now?</h2>
<p><a href="https://theconversation.com/what-is-repetitive-transcranial-magnetic-stimulation-and-how-does-it-actually-work-160771">Transcranial magnetic stimulation</a> involves the application of a series of magnetic pulses through a coil placed on the scalp. While the patient sits in a chair awake and relaxed, the magnetic field activates nerve cells in the brain, gradually changing the activity of brain circuits disrupted in depression. This is thought to help restore the normal interaction between brain regions.</p>
<p>Side effects are <a href="https://www.mayoclinic.org/tests-procedures/transcranial-magnetic-stimulation/about/pac-20384625#:%7E:text=Serious%20side%20effects%20are%20rare,t%20well%2Dprotected%20during%20treatment.">usually mild</a> and temporary. They may include scalp discomfort, headache, tingling or facial twitching, and feeling lightheaded for a short time after a treatment session.</p>
<p>There is consistent evidence for the <a href="https://journals.sagepub.com/doi/10.1177/00048674211043047">effectiveness</a> of transcranial magnetic stimulation treatment for acute episodes of depression. Its use is supported by many clinical trials as well as real-world studies showing benefits in more than <a href="https://pubmed.ncbi.nlm.nih.gov/32799106/">50% of patients receiving treatment</a>. It attracted Medicare funding several years ago and is now being progressively rolled out around Australia. </p>
<p>But there are several remaining problems with the use of transcranial magnetic stimulation treatment. First, it involves a patient coming into the clinic daily, Monday to Friday, for four to six weeks. This is inefficient and costly. </p>
<p>Both these problems may ultimately be solved through the development of what are referred to as “accelerated” protocols – treatments that give higher doses on fewer days. A patient may have four or five days of high-dose treatment in one week rather than having all of the treatment dose spread out over a month or more. </p>
<p><a href="https://www.nature.com/articles/s41386-023-01599-z">Studies</a> both locally and overseas have started to show more efficient delivery and <a href="https://ajp.psychiatryonline.org/doi/10.1176/appi.ajp.2019.19070720">very rapid clinical benefits</a> with these new treatment regimes.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/543401/original/file-20230818-4259-mewpzs.png?ixlib=rb-1.1.0&rect=65%2C5%2C3928%2C1988&q=45&auto=format&w=1000&fit=clip"><img alt="man sits in lab setting with equipment on" src="https://images.theconversation.com/files/543401/original/file-20230818-4259-mewpzs.png?ixlib=rb-1.1.0&rect=65%2C5%2C3928%2C1988&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/543401/original/file-20230818-4259-mewpzs.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=300&fit=crop&dpr=1 600w, https://images.theconversation.com/files/543401/original/file-20230818-4259-mewpzs.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=300&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/543401/original/file-20230818-4259-mewpzs.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=300&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/543401/original/file-20230818-4259-mewpzs.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=377&fit=crop&dpr=1 754w, https://images.theconversation.com/files/543401/original/file-20230818-4259-mewpzs.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=377&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/543401/original/file-20230818-4259-mewpzs.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=377&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">The lasting effects and need for maintenance doses of transcranial magnetic stimulation need further study.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/patient-transcranial-magnetic-stimulation-tms-experiment-426901186">Shutterstock</a></span>
</figcaption>
</figure>
<h2>What about for other conditions?</h2>
<p>Alongside the clinical rollout of transcranial magnetic stimulation for depression, research is increasingly demonstrating its potential value in other conditions. </p>
<p>A series of studies have demonstrated that a somewhat different type of transcranial magnetic stimulation, which is able to stimulate deeper regions of the brain but which still comes from a scalp based coil, can be effective in the treatment of symptoms in some patients with <a href="https://iocdf.org/about-ocd/ocd-treatment/tms/">obsessive compulsive disorder</a> (OCD). This is a critical development as many patients with OCD fail to improve with medication and psychological treatments and there are few new therapies in development for the condition. </p>
<p>Transcranial magnetic stimulation for OCD has been <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8864803/#:%7E:text=Aside%20from%20MDD%2C%20the%20next,adults%20in%202017%20(DEN170078).">approved</a> for clinical use in the United States and is available in a limited number of clinical services in Australia.</p>
<p>The treatment is showing promise for <a href="https://www.mdpi.com/2077-0383/11/3/624">addiction disorders</a>, including the development of an approach using transcranial magnetic stimulation to <a href="https://www.sciencedirect.com/science/article/pii/S0165178123002901">help patients stop smoking</a>. The initial trial of this approach showed at least a doubling of the percentage of patients who did not smoke over the first six weeks. </p>
<p>Transcranial magnetic stimulation may also help people manage chronic pain. Multiple approaches that use the technology show promise and <a href="https://www.sciencedirect.com/science/article/abs/pii/S0987705319301789?via%3Dihub">guidelines are emerging</a>, but a consistent clinical pathway has not yet been well defined.</p>
<p>A group of researchers across the country, led by <a href="https://tmsautism.com/">Professor Peter Enticott in Melbourne</a>, are conducting world-leading research trying to develop ways of using transcranial magnetic stimulation to help adolescent and adult patients with autism, especially to improve capacity for social understanding and interaction.</p>
<p>As clinical need escalates, early research is also exploring whether transcranial magnetic stimulation might alleviate symptoms of <a href="https://mecp.springeropen.com/articles/10.1186/s43045-022-00210-3">attention deficit hyperactivity disorder (ADHD)</a>. </p>
<p>Research has already demonstrated transcranial magnetic stimulation may improve, at least temporarily, thinking abilities in a range of disorders including <a href="https://www.frontiersin.org/articles/10.3389/fnagi.2022.984708/full">Alzheimer’s disease</a>. This is now being applied to see if it can improve attention for patients with ADHD. For now, this research remains in its infancy.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1689015899963961344"}"></div></p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/people-with-obsessive-compulsive-disorder-have-an-imbalance-of-brain-chemicals-our-discovery-could-mean-a-treatment-breakthrough-208549">People with obsessive-compulsive disorder have an imbalance of brain chemicals – our discovery could mean a treatment breakthrough</a>
</strong>
</em>
</p>
<hr>
<h2>Do the effects last?</h2>
<p>So far, the quality of the <a href="https://doi.org/10.1016/j.jad.2021.09.040">evidence</a> on the persistence of effects and the need for maintenance treatment with the use of transcranial magnetic stimulation in depression is patchy. Research is looking at whether ongoing transcranial magnetic stimulation less often (for example one treatment every two weeks) may prevent the recurrence of depression in patients who have responded well. <a href="https://pubmed.ncbi.nlm.nih.gov/31399997/">Preliminary studies</a> suggest maintenance treatment is effective, but there there have been insufficient high-quality studies to convince Medicare to provide a subsidy for it. </p>
<p>Medicare funding also does not fund the provision of transcranial magnetic stimulation for patients who experience the return of their depression on more than one occasion.</p>
<p>This is highly unusual. Patients with depression can have multiple courses of antidepressant medication, psychotherapy or electroconvulsive therapy based on similar levels of evidence. This is also true of most other medical therapies. </p>
<p>In clinical practice, and from the <a href="https://doi.org/10.1016/j.jad.2020.06.067">limited evidence available</a>, it seems clear that if a patient has responded on one occasion to transcranial magnetic stimulation, they are likely to again. Until this is resolved, patients are in an unenviable situation. They know there is an effective treatment that has worked for them already, but they can only access it at considerable expense or via lengthy private hospital admission.</p><img src="https://counter.theconversation.com/content/211417/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Paul Fitzgerald is a founder of TMS Clinics Australia / Monarch Mental Health Group which provides rTMS therapy through 21 clinics in three states of Australia. He has received grant funding from the NHMRC to support clinical trials into the use of rTMS. He was the author of several applications to the Medicare Services Advisory Committee seeking an item number for rTMS therapy for depression which led to the current approval.</span></em></p>What do we know so far about this promising form of treatment and how it might help people with a range of neurological conditions? And is it living up to its promise for people with depression?Paul B. Fitzgerald, Professor of Psychiatry, Australian National UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2120972023-08-28T01:53:41Z2023-08-28T01:53:41Z20% of children have developmental delay. What does this mean for them, their families and the NDIS?<p>Professor Bruce Bonyhady is often described as the architect of the National Disability Insurance Scheme (NDIS) and is co-chair of the panel reviewing it. He <a href="https://www.ndisreview.gov.au/sites/default/files/2023-08/a-question-of-balance-speech.pdf">spoke last week</a> about the sustainability challenges faced by the scheme. </p>
<p>Among the key issues identified was that <a href="https://www.abc.net.au/news/2023-08-22/concerns-about-ndis-raised-by-co-chair-of-review/102758296">20% of Australian children</a> experience learning difficulties, developmental concerns, developmental delay or are found to have disability. Bonyhady <a href="https://www.ndisreview.gov.au/news/future-ndis-and-where-we-are-heading">said</a> this made it a “mainstream issue”. He added the NDIS was never designed to be the main support system for the majority of these children. </p>
<p>With the <a href="https://www.ndisreview.gov.au/resources/reports/what-we-have-heard-report">NDIS review</a> due to report to state and federal ministers in October, the comments signal a re-calibration of the scheme. </p>
<p>This presents another challenge: which government systems outside the NDIS will embrace the large number of children who need developmental support?</p>
<h2>What is a developmental delay?</h2>
<p><a href="https://raisingchildren.net.au/guides/a-z-health-reference/developmental-delay#:%7E:text=Developmental%20delay%20can%20show%20up,short%20term%20or%20long%20term.">Developmental delay</a> is a general term that refers to young children who are slower to develop communication, physical, social, emotional and cognitive skills than typically expected. The pace of a child’s development can be measured in many ways, one of which is comparing their development to established <a href="https://www.healthdirect.gov.au/developmental-milestones">milestones</a>, such as when they learn their first word or when they learn to walk.</p>
<p>Many things can cause developmental delay. These include biological differences (such as genetic conditions), environmental challenges (including deprivation) or a combination of both. In many cases, the causes of a child’s developmental delay remain unknown.</p>
<p>Developmental delay is a term commonly used in clinical practice, but not included in official diagnostic manuals like the <a href="https://www.psychiatry.org/psychiatrists/practice/dsm">Diagnostic and Statistical Manual</a>. This is because developmental delay is viewed as a temporary state in child development. It is most often used for children under five. </p>
<p>As children grow older, some developmentally catch up with their peers. Others continue to lag behind. At a certain point in development – typically around five - children in the latter group will start to be referred to as having a developmental disability. </p>
<p>Developmental disabilities are included in official diagnostic manuals and include autism, attention deficit hyperactivity disorder (ADHD), intellectual disability, specific learning disorders, communication disorders and developmental coordination disorder.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1694116552474271841"}"></div></p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/new-national-autism-guideline-will-finally-give-families-a-roadmap-for-therapy-decisions-199786">New national autism guideline will finally give families a roadmap for therapy decisions</a>
</strong>
</em>
</p>
<hr>
<h2>Developmental delay and the NDIS</h2>
<p>The NDIS has a <a href="https://www.ndis.gov.au/understanding/families-and-carers/early-childhood-approach-children-younger-9/developmental-delay-and-early-childhood-approach#how-an-early-childhood-partner-will-evidence-developmental-delay-for-children-younger-than-6">specific definition of developmental delay</a> which encompasses three areas. Children are considered to have a developmental delay if their delay is: </p>
<ul>
<li>due to mental or physical impairments</li>
<li>substantially reduces functional capacity</li>
<li>requires specialist services. </li>
</ul>
<p>Around <a href="https://www.ndis.gov.au/about-us/publications/quarterly-reports">11% of all NDIS participants</a> are classified as having a developmental delay. There are also a significant number of children with developmental delay who are not within the NDIS. Taken together, these groups make up about 20% of Australian children under five. </p>
<p>While there is a general community view that developmental delay is an increasing issue in Australia, there is a lack of data tracking over time to understand if this view is accurate.</p>
<p>Our clearest indication comes from <a href="https://www.aedc.gov.au/early-childhood/findings-from-the-aedc">Australian Early Development Census</a>, which surveys more than 300,0000 children entering primary school. </p>
<p>The latest available data indicate there are now slightly fewer children who are “developmentally on track” (down from 55.4% in 2018 to 54.8% in 2021) and an increase in the number of children who are “developmentally vulnerable” in any one area of development (up from 21.7% in 2018 to 22% in 2021). </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/a-decade-on-the-ndis-has-had-triumphs-challenges-and-controversies-where-to-from-here-208463">A decade on, the NDIS has had triumphs, challenges and controversies. Where to from here?</a>
</strong>
</em>
</p>
<hr>
<h2>Supporting children with developmental delay</h2>
<p>There has always been a large number of children experiencing developmental delay. But the fragmentation across state/territory and Commonwealth health and disability systems has meant the true scale of children struggling with development has not been clear. The unified system of the NDIS has made the percentage of children with delays clearer.</p>
<p>But, as Bonyhady notes, the NDIS was not designed to support all these children. The NDIS was meant to complement existing systems such as health and education, and to provide additional support to children with the most significant disability impacts. This figure is estimated to be a small proportion of the 20% of children who meet criteria for developmental delay.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/what-is-early-intervention-for-infants-with-signs-of-autism-and-how-valuable-could-it-be-205839">What is 'early intervention' for infants with signs of autism? And how valuable could it be?</a>
</strong>
</em>
</p>
<hr>
<h2>Meeting children and families where they are</h2>
<p>The NDIS is rightly <a href="https://www.ndisreview.gov.au/news/future-ndis-and-where-we-are-heading">described</a> as a policy miracle, and has benefited hundreds of thousands of Australians – with millions more to come. Its future thriving is highly dependent on how our community supports children with developmental delay. </p>
<p>The NDIS has accelerated a trend for the <a href="https://www.afr.com/policy/economy/children-undermining-the-sustainability-of-the-ndis-20230630-p5dkp7">medicalisation</a> of development supports. Children with developmental delays receive supports within clinics, rather than in the natural settings in which they live and function every day. </p>
<p>This has <a href="https://theconversation.com/more-children-than-ever-are-struggling-with-developmental-concerns-we-need-to-help-families-connect-and-thrive-209866">weakened major protective factors</a> known to support child development, such as community connection and parental empowerment.</p>
<p>Building capacity to support children with developmental delay in their everyday contexts – at home, in childcare, kindergartens or preschools, in the local community – will be crucial to ensuring children with developmental delay and their families thrive into later childhood. </p>
<p>And it will help the NDIS remain the life-changing system it is.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/babies-crawl-scoot-and-shuffle-when-learning-to-move-heres-what-to-watch-for-if-youre-worried-204913">Babies crawl, scoot and shuffle when learning to move. Here's what to watch for if you're worried</a>
</strong>
</em>
</p>
<hr>
<img src="https://counter.theconversation.com/content/212097/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Andrew Whitehouse is the Director of CliniKids, which is the community health arm of the Telethon Kids Institute. Children accessing CliniKids may be supported through the NDIS. Andrew receives research funding from NHMRC, ARC, the Autism CRC, and the Angela Wright Bennett Foundation</span></em></p>Developmental delay is viewed clinically as a temporary state where children are slower to develop than expected. It is most often used for children under five.Andrew Whitehouse, Bennett Chair of Autism, Telethon Kids Institute, The University of Western AustraliaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2107252023-08-23T09:55:24Z2023-08-23T09:55:24ZIs Hercule Poirot autistic? Here are seven clues that he might be<p>Hercule Poirot, the Belgian detective with the flamboyant moustache and keen eye for detail, is one of the most beloved characters in crime fiction. He was created by British writer Agatha Christie and first arrived on our bookshelves in 1920. He has since appeared in 33 novels, 51 short stories and two plays.</p>
<p>He has also been depicted in film and television by an array of actors, with Kenneth Branagh’s latest iteration, <a href="https://www.imdb.com/title/tt22687790/?ref_=nm_flmg_unrel_1_act">A Haunting in Venice</a>, opening on the big screen in September 2023. </p>
<p>Poirot’s characteristics have led us to speculate that he may be autistic, even though Christie never explicitly said so.</p>
<h2>Headcanon and autistic representation</h2>
<p>When audiences “<a href="https://www.merriam-webster.com/wordplay/words-were-watching-headcanon-fanon#:%7E:text=Headcanon%20is%20a%20word%20used,on%20screen%2Fon%20the%20page.">headcanon</a>” a character, this means they have interpreted them in a way which is not openly stated in the film, TV or other media in which they feature. As media portrayals of autistic people are rare and often unrealistic, the autistic and wider neurodivergent communities sometimes <a href="https://eprints.kingston.ac.uk/id/eprint/51580/">headcanon</a> characters who <a href="https://vocal.media/geeks/autism-is-having-a-moment-on-tv-but-not-everyone-in-the-autistic-community-is-celebrating">aren’t explicitly confirmed</a> as neurodivergent (ND).</p>
<p>However, creating a headcanon can cause controversy. They are subjective and some people believe the process of identifying a character as ND-coded is an over-simplification of the complexities of autism and other neurotypes. But celebrating difference can be positive for those who feel underrepresented in the media.</p>
<h2>The detective</h2>
<p>Detectives are often ND-coded in <a href="https://orca.cardiff.ac.uk/id/eprint/3716/">crime fiction stories</a>. Their actions and diverse thought patterns are typically not understood by those around them. So, their personalities are labelled as “different”, or their mannerisms are classed as odd or <a href="https://doi.org/10.16995/olh.461">eccentric</a>.</p>
<p>Some are explicitly ND, such as Adrian Monk in the US series <a href="https://mandfilms.com/projects/monk/">Monk</a> and Saga Norén in the nordic noir series <a href="https://www.imdb.com/title/tt1733785/">The Bridge</a>. Others have been headcanoned as ND – most frequently, Sherlock Holmes in his <a href="https://doi.org/10.1027/1015-5759/a000506">various iterations</a>.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/8rDSNChX5lo?wmode=transparent&start=1" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Many argue that David Suchet is the quintessential screen Poirot.</span></figcaption>
</figure>
<p>Here are seven reasons why Hercule Poirot is also ND-coded:</p>
<h2>1. Social exclusion</h2>
<p>Poirot is regularly seen as “different” by those around him. Often, this is attributed to him being Belgian, with other characters drawing attention to his <a href="https://www.theguardian.com/childrens-books-site/2016/feb/16/hercule-poirot-an-odd-sort-of-hero">“odd” behaviours</a>. He is also described as “positively exotic” in <a href="https://www.agathachristie.com/en/stories/dumb-witness">1937’s Dumb Witness</a>, and is regularly referred to as being French, something which angers Poirot.</p>
<h2>2. Scripting</h2>
<p>Poirot <a href="https://www.agathachristie.com/en/stories/the-abc-murders">scripts conversations</a> prior to having them, planning out what he will say and how he will act towards people, much like <a href="https://www.stephaniebethany.com/blog/autistic-scripting-and-why-its-valuable">autistic people</a> often do. </p>
<h2>3. Masking</h2>
<p>He also masks, which is a phenomenon frequently reported by <a href="https://www.liebertpub.com/doi/abs/10.1089/aut.2020.0083">autistic people</a>, in which they hide or reduce elements of themselves to fit in. Poirot does this by putting on his “<a href="https://www.agathachristie.com/en/stories/halloween-party">foreign shield of exaggerated mannerisms</a>” – sometimes taking advantage of his uniqueness, knowing how others will see him and behaving accordingly.</p>
<h2>4. Psychology</h2>
<p>Poirot is interested in psychology, a common special interest for autistic <a href="https://meridian.allenpress.com/idd/article-abstract/50/5/391/7879/Understanding-Differences-in-Neurotypical-and?redirectedFrom=fulltext">people</a>, who often wish to have an in-depth understanding of people. </p>
<p>He states that his brain and mind work differently to those around him, and arguably values his enduring companion Hastings for his “neurotypical” <a href="https://www.agathachristie.com/en/stories/lord-edgware-dies">insights</a>, telling him: “In you, Hastings, I find the normal mind almost perfectly illustrated.”</p>
<figure class="align-left ">
<img alt="A book with the words 'Agatha Christie - The Murder of Roger Ackroyd' sits on a wooden surface." src="https://images.theconversation.com/files/543256/original/file-20230817-17-ydwmn2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/543256/original/file-20230817-17-ydwmn2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=900&fit=crop&dpr=1 600w, https://images.theconversation.com/files/543256/original/file-20230817-17-ydwmn2.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=900&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/543256/original/file-20230817-17-ydwmn2.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=900&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/543256/original/file-20230817-17-ydwmn2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1131&fit=crop&dpr=1 754w, https://images.theconversation.com/files/543256/original/file-20230817-17-ydwmn2.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1131&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/543256/original/file-20230817-17-ydwmn2.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1131&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">The Murder of Roger Ackroyd (1926) was the third novel to feature Poirot as the lead detective.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/madrid-spain-march-5-2018-murder-1047299224">Plateresca/Shutterstock</a></span>
</figcaption>
</figure>
<h2>5. Interaction</h2>
<p>Poirot also displays a unique interaction style which other characters often do not understand, or label peculiar. This mirrors the differences in communication preferences, and misunderstandings this can lead to, between neurotypical and ND <a href="https://doi.org/10.1080/09687599.2012.710008">people</a>.</p>
<p>Poirot is less governed by <a href="https://link.springer.com/article/10.1007/s10803-018-3809-1">social norms</a> and customs, considering each character as an individual, regardless of their age, sex, gender or socioeconomic status. Christie often played on the readers’ prejudice, with the detective obliged to see <a href="https://link.springer.com/book/10.1007/978-3-319-33533-9">beyond this</a>.</p>
<p>For example, in <a href="https://www.agathachristie.com/en/stories/peril-at-end-house">Peril at End House (1932)</a>, Hastings believes that an affable sea commander must be above suspicion, but Poirot responds: “Doubtless he has been to what you consider the right school. Happily, being a foreigner, I am free from these prejudices, and can make investigations unhampered by them.”</p>
<h2>6. Routine</h2>
<p>Poirot is very particular in the way he solves crimes, through order and method. He enjoys keeping a routine, typically revolving around his <a href="https://www.agathachristie.com/en/stories/mrs-mcgintys-dead">meals</a>, which he is also very particular about: “For my breakfast, I have only toast which is cut into neat <a href="https://www.agathachristie.com/en/hercule-poirots-autobiography#:%7E:text=Anything%20in%20the%20least%20crooked,it%20straight%20for%20you%20">little squares</a>.” </p>
<p>Autistic people often find comfort in <a href="https://neurodivergentrebel.com/2023/04/10/autistic-insistence-on-sameness-or-comfort-in-familiarity/">familiarity</a> and in eating <a href="http://www.autscape.org/2023/programme/handouts/autscape-2023-same-food-as-self-care.pdf">the same or safe foods</a>.</p>
<h2>7. Sensory regulation</h2>
<p>Poirot wears tight, patent leather shoes, as described in <a href="https://www.agathachristie.com/en/stories/halloween-party">Hallowe’en Party (1969)</a>: “He was unsuitably attired as to the feet in patent leather shoes which were, so Mr Fullerton guessed shrewdly, too tight for him.”</p>
<p>This habit is arguably for <a href="https://www.theguardian.com/childrens-books-site/2016/feb/16/hercule-poirot-an-odd-sort-of-hero">sensory reasons</a>, which is <a href="https://doi.org/10.1177/13623613221081188">very important</a> for autistic people and their wellbeing.</p>
<p>Poirot requires a particular sensory environment to think properly, and values his alone time to process what he has learnt. He also likes to keep his immediate surroundings, including his friend Hastings, <a href="https://www.agathachristie.com/en/stories/murder-on-the-links">neat and orderly</a>.</p>
<p>Although Poirot’s neurotype is never explicitly detailed in Christie’s works, fellow ND readers who understand and recognise these codes may headcanon Poirot as part of their community.</p><img src="https://counter.theconversation.com/content/210725/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Agatha Christie never explicitly said so, but many of her Belgian detective’s character traits could be interpreted as being autistic.Rebecca Ellis, Assistant researcher in Public Health, Swansea UniversityJamie Bernthal-Hooker, Visiting Senior Fellow in English and Creative Writing, University of SuffolkLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1807152023-08-18T13:30:45Z2023-08-18T13:30:45ZHow the tourism industry – and other travellers – can help families of autistic children get the break they deserve<figure><img src="https://images.theconversation.com/files/543246/original/file-20230817-17-qp0zf3.jpg?ixlib=rb-1.1.0&rect=100%2C84%2C5506%2C3648&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/happy-family-jumping-together-on-beach-286469927">Tom Wang/Shutterstock</a></span></figcaption></figure><p>Going on a family holiday is <a href="https://www.researchgate.net/publication/261216568_Backer_E_Schanzel_H_2012_The_stress_of_the_family_holiday_in_H_Schanzel_I_Yeoman_E_Backer_Eds_Family_Tourism_Multi_Disciplinary_Perspectives_Channel_View_Publications">not always a relaxing</a> experience. It can involve traffic jams, airport queues and stress. Even so, most of us look forward to going away for the change of scenery and break from our everyday routines. </p>
<p>For autistic children, though, these changes in environment and routine can be <a href="https://www.researchgate.net/publication/269983758_Holiday_What_Holiday_Vacation_Experiences_of_Children_with_Autism_and_Their_Families">difficult to cope with</a>. And <a href="https://www.tandfonline.com/doi/full/10.1080/13683500.2023.2233040">our research</a> suggests that this can make their family holidays extremely fraught affairs.</p>
<p>Some of the British parents we spoke to said the challenges of taking their autistic children away on holiday were so great that they would only go on short trips (35% only ever spent one or two nights away). Many did their best to avoid peak travel times and other situations in which their child might become overstimulated. </p>
<p>A large majority (over 80%) only ever took their holidays in the UK, rather than going abroad. Some said they chose not to go away on holiday at all, and took day trips instead to avoid overnight stays.</p>
<p>Many told us that having an autistic child had a significant effect on when, where and how they took family holidays. One parent commented: “I need a holiday myself by the time I get back from having my son full-time on my own.” </p>
<p>Another said their latest holiday was so “traumatic [that it] made us cancel a future holiday and put us off trying to go again”.</p>
<h2>Reactions of other holidaymakers</h2>
<p>Overall, our research found several common reasons why parents found it difficult to take their autistic children away on a family holiday. We were surprised to learn that the biggest factor was the reactions of other holidaymakers to their child’s behaviour. </p>
<p>Autistic children can often <a href="https://doi.org/10.1177/1362361311431703">become anxious</a> when they encounter new and unfamiliar stimuli, which of course come thick and fast on holiday. And when an autistic child becomes overwhelmed by anxiety, they may become visibly upset or engage in something known as <a href="https://www.autism.org.uk/advice-and-guidance/topics/behaviour/stimming/all-audiences">self-stimulating behaviour</a>, or “<a href="https://journals.sagepub.com/doi/full/10.1177/1362361319829628">stimming</a>”, which can involve things like rocking in a seat, flapping hands, banging toys together, or pacing up and down.</p>
<p>Some parents (from a sample of 295 families with autistic children) told us this was often interpreted by others as “bad behaviour”, and that they felt judged for not being able to control their offspring. </p>
<p>Nearly half of the parents in our survey considered interactions with other holidaymakers to be a difficult aspect of travelling with an autistic child. Many of these said that other holidaymakers seemed to lack understanding or empathy for their child’s condition. Some would glare, while others even scolded the child themselves. </p>
<h2>Avoiding triggers</h2>
<p>Going on excursions or to events was another stressful part of holidays, according to our survey participants. Many chose to avoid them and stay close to their accommodation throughout their trip.</p>
<figure class="align-center ">
<img alt="A busy airport." src="https://images.theconversation.com/files/543249/original/file-20230817-15-mn73ah.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/543249/original/file-20230817-15-mn73ah.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=399&fit=crop&dpr=1 600w, https://images.theconversation.com/files/543249/original/file-20230817-15-mn73ah.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=399&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/543249/original/file-20230817-15-mn73ah.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=399&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/543249/original/file-20230817-15-mn73ah.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=501&fit=crop&dpr=1 754w, https://images.theconversation.com/files/543249/original/file-20230817-15-mn73ah.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=501&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/543249/original/file-20230817-15-mn73ah.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=501&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Busy airports can be overwhelming.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/manchester-uk-25-august-2018-chaos-1163899090">RootsShoots/Shutterstock</a></span>
</figcaption>
</figure>
<p>But this then raised another issue which came up frequently – how to
entertain an autistic child’s siblings. Some autistic children, for example, can be sensitive to loud noises, bright lights and strong smells – which may well feature in the kinds of places their siblings find exciting and want to visit. As one mother explained: “The holiday is supposed to be for the whole family, but my whole time is spent calming and attending to my autistic daughter due to her heightened struggles on holiday. My younger child and other family members do not have the holiday [they expect to have].”</p>
<p>Parents also mentioned that while the travel industry as a whole seems to have made significant gains in terms of meeting the needs of people with mobility issues, those with other needs are poorly served by comparison. </p>
<p>Some said that things like quiet spaces at airports or fast-track queues at amusement parks would be extremely helpful. Alternative ideas included the provision of noise-cancelling headphones on flights, and <a href="https://pure.york.ac.uk/portal/en/publications/weighted-blankets-and-sleep-in-autistic-children-a-randomized-con">weighted blankets</a> and blackout blinds in hotels. </p>
<p>Other holidaymakers can also do a lot to help. As fellow travellers, and often fellow parents, we need to be more aware of the challenges that taking an autistic child on holiday can involve. </p>
<p>Our research strongly suggests that a more tolerant attitude towards the behaviour of autistic children, and a greater degree of empathy with their parents, would go a long way to helping the whole family get the break they deserve.</p><img src="https://counter.theconversation.com/content/180715/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The Family Fund - gave advice with respect to accessing participants and shared our questionnaire with their networks</span></em></p><p class="fine-print"><em><span>Brian Garrod and Raphaela Stadler do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>New research suggests many families of autistic children are reluctant to travel.Brian Garrod, Professor of Marketing, Swansea UniversityAllan Jepson, Senior Lecturer and Researcher, University of HertfordshireRaphaela Stadler, Associate Professor for Tourism and Event Management, MCI Management Center InnsbruckLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2102292023-08-15T12:35:07Z2023-08-15T12:35:07ZDaily report cards can decrease disruptions for children with ADHD<figure><img src="https://images.theconversation.com/files/542161/original/file-20230810-23-1fhmc8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Students with ADHD who get a daily report card had 4.5 fewer rule violations per 30-minute class than those without one, one study found.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/father-looking-very-happy-looking-at-his-daughters-royalty-free-image/1389796720">Hispanolistic/E+ Collection/Getty Images</a></span></figcaption></figure><p>As another school year approaches, some caregivers, students and teachers may be feeling something new needs to happen to promote success in the classroom. </p>
<p>Daily report cards can be a great starting point.</p>
<p>As a clinical psychologist who studies <a href="https://scholar.google.com/citations?user=BRXERkMAAAAJ&hl=en">how schools can help students with attention-deficit/hyperactivity disorder</a>, I know traditional report cards distributed three or four times per year don’t do enough to make a difference for children who are prone to outbursts or other challenging behaviors. </p>
<p>Studies <a href="https://doi.org/10.1177/0014402917706370">conducted by my team</a> <a href="https://doi.org/10.1177/1087054717734646">and others</a> support the idea that these students are better served by <a href="https://doi.org/10.1080/02796015.2010.12087748">daily report cards</a>. </p>
<h2>Track daily progress</h2>
<p>Daily report cards date back at least to the 1960s, when they were used in a study involving children attending a <a href="https://doi.org/10.1901/jaba.1970.3-223">special education summer school</a>. </p>
<p>Today they are commonly used for <a href="https://doi.org/10.1177/0014402917706370">children with ADHD</a> in both <a href="https://doi.org/10.1007/s12310-020-09375-w">general education</a> and <a href="https://doi.org/10.1080/02796015.2010.12087775">special education</a> classrooms. Daily report cards have also been used for <a href="https://files.eric.ed.gov/fulltext/ED607134.pdf">students with autism</a> without intellectual disability. And one study found that many teachers say they use <a href="https://doi.org/10.1177/10983007060080030601">versions of a daily report card</a> for brief periods to address behaviors across many different school situations.</p>
<p>A daily report card can be very <a href="https://ccf.fiu.edu/research/_assets/how_to_establish_a_school_drc.pdf">easy for teachers</a> to <a href="https://doi.org/10.1080/10474412.2013.785182">create and use</a>, either with <a href="https://mygoalpal.fiu.edu">an app</a> or by developing them on their own. First, the teacher along with others – who may include the parents, principal, school psychologist or counselor, and even the child if appropriate – should meet to establish goals. Goals should be positively phrased, such as: “Completed work within time given” or “Participated in class discussions without interruption.” </p>
<p>Once set up, the daily report card can take just 10 seconds to complete. The time savings are significant when one considers the alternatives typically used in schools, such as repeated redirection or reprimanding, or sending the student to the principal’s office to be monitored.</p>
<p>Daily report cards also work. </p>
<p>A 2010 study evaluated children with ADHD where half had a daily report card and half did not. Those with the daily report card had an average of <a href="https://doi.org/10.1080/02796015.2010.12087775">4.5 fewer rule violations</a> per 30-minute class than those without one. Extrapolating across a school day, that is 54 fewer daily rule violations on average, and over 10,000 per school year. </p>
<figure class="align-center ">
<img alt="Example of a daily report card used in schools" src="https://images.theconversation.com/files/542048/original/file-20230810-25-k9dewx.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/542048/original/file-20230810-25-k9dewx.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=464&fit=crop&dpr=1 600w, https://images.theconversation.com/files/542048/original/file-20230810-25-k9dewx.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=464&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/542048/original/file-20230810-25-k9dewx.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=464&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/542048/original/file-20230810-25-k9dewx.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=583&fit=crop&dpr=1 754w, https://images.theconversation.com/files/542048/original/file-20230810-25-k9dewx.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=583&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/542048/original/file-20230810-25-k9dewx.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=583&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">An example of a daily report card.</span>
<span class="attribution"><span class="source">Florida International University Center for Children and Families</span></span>
</figcaption>
</figure>
<h2>Realistic goals</h2>
<p>For many children with challenging behaviors, it is important to set goals that can be easily reached – at least at first. </p>
<p>Over time, the goals can be made more challenging as the child experiences success – a <a href="https://www.routledge.com/Behavior-Modification-What-It-Is-and-How-To-Do-It/Martin-Pear/p/book/9780815366546">process called shaping</a>. For example, if a child interrupts a lesson by calling out about five times per class, the initial goal may be set at “Participates in lesson with no more than four interruptions.” </p>
<p>This would represent an improvement, and it would also ensure the goal was reachable. Once the child met the goal for three to five days in a row, the goal could be changed to “Participates in lesson with no more than three interruptions.”</p>
<h2>Positive parent-teacher communications</h2>
<p>Teachers tend to <a href="https://doi.org/10.1037/spq0000442">communicate with caregivers more frequently</a> when a child is experiencing difficulties in the classroom. But these communications often focus on <a href="https://www.additudemag.com/mean-teacher-comments-adhd-students/">negative behaviors</a>. As a result, they can <a href="https://doi.org/10.1080/00131911.2019.1666794">strain relationships</a> between the caregiver and the teacher. Other times, it may result in the caregiver’s avoiding communication with the school. </p>
<p>Daily report cards can result in more positive and solution-focused communication instead of reports focusing only on what went wrong and can therefore enhance caregiver-teacher communication.</p>
<h2>Motivating rewards</h2>
<p>Importantly, the daily report card should be linked to home-based privileges and rewards so that children are motivated to meet daily goals.</p>
<p>At the end of the day, the child brings their daily report card home and, based on their behavior at school that day, home privileges such as an allotment of screen time or a slightly later bedtime can be used as rewards.</p>
<p>Importantly, this is not a punishment program in which a child loses privileges if goals are not met. It also is not bribing the child by providing a reward before an appropriate behavior is completed. Rather, the child starts the day without home privileges and earns them based on positive school behavior. The daily report card tells the child exactly what goals need to be met to earn the motivating privileges. This small difference can be quite powerful for the child because it puts them in charge of how they earn access to things they like to do at home based on how they behaved at school that day.</p>
<p>Evidence suggests this home-based reward system is <a href="https://doi.org/10.1080/02796015.2010.12087775">one of the biggest factors</a> in whether the daily report card is successful. It also provides a new opportunity for the child and caregiver to have a positive discussion about school each day.</p>
<h2>Better than medication?</h2>
<p>There is also evidence that the daily report card is a <a href="https://doi.org/10.1080/15374416.2015.1055859">cost-effective approach</a> for children with ADHD as an <a href="https://doi.org/10.1080/15374416.2015.1105138">alternative to medication treatment</a>. </p>
<p>My colleagues and I conducted a study in which children with ADHD were randomly assigned to start the school year with either medication or a daily report card. The parents of those assigned the daily report cards took part in classes that taught them how to provide home rewards for it. At the end of the year, the students who started with the daily report card had half as many discipline referrals and 33% fewer disruptive behaviors observed in the classroom than the students receiving medication. The daily report card approach also <a href="https://doi.org/10.1080/15374416.2015.1055859">cost less than daily medication</a>. The students who started the school year with the daily report card had overall treatment costs of US$708 less than the students starting with medication.</p>
<p>Teachers and caregivers who want to learn more about daily reports cards can check out the <a href="https://ccf.fiu.edu/research/_assets/how_to_establish_a_school_drc.pdf">downloadable workbook</a> or <a href="https://mygoalpal.fiu.edu">free app</a> designed by my colleagues at Florida International University’s <a href="https://ccf.fiu.edu/">Center for Children and Families</a>. Both resources allow caregivers and teachers to set goals and track a student’s progress. Starting the school year with a daily report card should help the child achieve the positive days needed to get a good grade on their report card at the end of the grading period.</p><img src="https://counter.theconversation.com/content/210229/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Gregory Fabiano receives funding from the Department of Education and the National Institutes of Health to study positive behavioral supports like the Daily Report Card. Gregory Fabiano also receives royalties from Guilford Publications for a book written about Daily Report Cards.</span></em></p>Traditional report cards sent home every few months are fine for most students. But for kids with behavioral issues, a daily report card can be a better option.Gregory Fabiano, Professor of Psychology, Florida International UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2029972023-06-30T14:09:06Z2023-06-30T14:09:06Z‘Dehumanising policies’ leave autistic people struggling to access health, education and housing – new review<figure><img src="https://images.theconversation.com/files/534448/original/file-20230627-31322-i8q760.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C4160%2C3120&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Autistic people often don't receive the correct healthcare to meet their needs.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/young-woman-many-people-waiting-medical-1033246597">toodtuphoto/Shutterstock</a></span></figcaption></figure><p><a href="https://www.cdc.gov/ncbddd/autism/data.html">Around 3% of people</a> are estimated to be autistic and it is a lifelong disability. Most autistic people experience the sensory world differently, such as places being too loud or too bright. We also typically communicate in a more direct way than is usual.</p>
<p>In the UK, the Equality Act 2010 means that autistic people should receive reasonable adjustments – meaning organisations must make changes to how they provide their services to remove environmental and social barriers. Despite this, autistic people often experience society as highly disabling. We die between 16 and 30 years younger than non-autistic people, and have a suicide rate <a href="https://journals.sagepub.com/doi/full/10.1177/1362361318764742">nine times higher</a>.</p>
<p>Autistic people are often misunderstood by non-autistic people who <a href="https://journals.sagepub.com/doi/10.1177/13623613221129123">fail to recognise</a> how autistic people show empathy. This misunderstanding is embedded in many government bodies, which can result in dehumanising policies and services that do not meet autistic people’s needs.</p>
<p><a href="https://library.oapen.org/handle/20.500.12657/63401">We reviewed</a> the evidence from a range of government and non-government research and reviews to understand how well autistic people fair in relation to government services. We looked at the areas described by William Beveridge, founder of the UK welfare state, as <a href="https://www.parliament.uk/about/living-heritage/transformingsociety/livinglearning/coll-9-health1/coll-9-health/#:%7E:text=By%20the%20outbreak%20of%20war,%2C%20disease%2C%20squalor%20and%20want.">“the five giants”</a>: health, education, employment, poverty and housing. Our findings, which focused on England and Wales due to differences relating to devolution, were bleak.</p>
<p><strong>1. Health</strong></p>
<p>Many government services designed to support autistic people are not available without diagnosis. However, in the UK, most autistic people <a href="https://journals.sagepub.com/doi/10.1177/13623613211059674">aren’t yet diagnosed</a>.</p>
<p>We found diagnosis waiting lists were long – for example, <a href="https://cavuhb.nhs.wales/our-services/integrated-autism-services/diagnostic-assessments-for-autism/">more then 20 months</a> for people served by the Cardiff & Vale health board in south Wales. Across England, between June 2021 and 2022, the waiting list for an autism assessment rose from <a href="https://digital.nhs.uk/data-and-information/publications/statistical/autism-statistics/july-2021-to-june-2022">88,000 people to more than 122,000</a>. </p>
<p>Even with a diagnosis, autistic people often don’t receive healthcare that meets their needs. Some people don’t even tell doctors they are autistic, because they expect to be treated badly. Of those who have told their GP, more than 75% said their GP didn’t make <a href="https://westminsterautismcommission.files.wordpress.com/2016/03/ar1011_ncg-autism-report-july-2016.pdf">any reasonable adjustments</a>, such as allowing extra processing time during appointments. </p>
<p>Being expected to phone to book appointments is also difficult for <a href="https://bmjopen.bmj.com/content/12/2/e056904">nearly two-thirds of autistic people</a>, yet many GP surgeries insist on phone calls to book appointments. Autistic people also report that clinical spaces <a href="https://www.ndti.org.uk/resources/publication/its-not-rocket-science">are painfully bright, busy and loud</a>, which can make it harder for us to explain what is wrong to the doctor.</p>
<p><strong>2. Education</strong></p>
<p>Autistic people often struggle in educational institutions because they rarely meet our needs. This can mean, for example, that autistic children are labelled as “troublemakers” by teachers, rather than disabled.</p>
<p>Despite autistic people accounting for only 3% of the population, around <a href="https://www.gov.uk/government/consultations/send-review-right-support-right-place-right-time">80% of those sent to pupil referral units</a> are autistic. This has lifelong effects, as <a href="https://lordchrisholmes.com/report-disabled-students-allowance-dsa/">only 8% </a> of students with a “statement of special educational needs” or an education, health & care plan progress to university, compared with 50% of non-disabled people. </p>
<p>For autistic people who do make it to university, the disabled students allowance (DSA) should pay for extra costs – but <a href="https://lordchrisholmes.com/report-disabled-students-allowance-dsa/">less than one-third </a>of eligible students get DSA. In addition, the support provided by universities is often <a href="https://www.tandfonline.com/doi/abs/10.1080/14703297.2020.1850320?journalCode=riie20">poor quality or absent</a>, leaving autistic students disadvantaged.</p>
<p><strong>3. Employment</strong></p>
<p>The UK’s <a href="https://www.legislation.gov.uk/ukpga/2009/15/contents">Autism Act 2009</a> says that autistic people should be supported to be able to work. However, autistic people are <a href="https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/disability/articles/outcomesfordisabledpeopleintheuk/2021">less likely to be in work</a> than non-autistic people. </p>
<p><a href="https://www.gov.uk/access-to-work">Access to work</a> is a UK government scheme to pay disabled people for the extra costs of working, but the application and claiming processes are complicated. Of the 42% of autistic adults who say they need help to access work, <a href="https://s4.chorus-mk.thirdlight.com/file/1573224908/61601577629/width=-1/height=-1/format=-1/fit=scale/t=443899/e=never/k=a402a7d4/nas_appga_report.pdf">only 12% are getting it</a>.</p>
<p><strong>4. Poverty</strong></p>
<p>Autistic people are <a href="https://doi.org/10.1108/AIA-01-2022-0004">more likely</a> to live in poverty than non-autistic people. <a href="https://edm.parliament.uk/early-day-motion/39649/dont-write-me-off-campaign">A 2009 report</a> found one-third of autistic people in the UK were not in paid work or getting benefits. One reason for this is that the benefits designed to stop disabled people living in poverty, such as the personal independence payment (PIP), can be hard to apply for, especially for autistic people. </p>
<p>And for people who manage to apply for PIP, autism falls within the “psychiatric disorders” category, which means they are <a href="https://www.gov.uk/government/statistics/personal-independence-payment-statistics-to-april-2022/personal-independence-payment-official-statistics-to-april-2022#pip-statistics-by-disabling-condition">least likely to receive the award</a> and most likely to lose their PIP upon renewal. </p>
<p><strong>5. Housing</strong></p>
<p>Around <a href="https://www.tandfonline.com/doi/full/10.1080/09687599.2021.2004881">12% of autistic people are homeless</a>. As rent typically costs far more than the amount of money awarded in housing benefit, and autistic people are less likely to be in work or have access to benefits, they are more likely to struggle to pay for housing. </p>
<p>This can be made worse by the “<a href="https://www.disabilityrightsuk.org/resources/bedroom-tax">bedroom tax</a>”, which is when tenants in social housing have their benefit reduced if they have spare bedrooms. This affects <a href="https://www.tandfonline.com/doi/full/10.1080/19491247.2021.1964253">single people under 35</a> especially, as they are only eligible for the <a href="https://england.shelter.org.uk/housing_advice/benefits/benefits_for_under_35s_in_shared_housing">shared accommodation rate</a>. Autistic people can find it hard to live with other people due to their sensory needs, and there are <a href="https://www.tandfonline.com/doi/abs/10.1080/14616718.2014.992681">few one-bedroom properties</a>. </p>
<p>Autistic people who do not have somewhere to live are more likely to be <a href="https://publications.parliament.uk/pa/jt201919/jtselect/jtrights/121/121.pdf.">placed in secure residential care</a>, where they are subjected to similar confines to people in prison, by staff who may have <a href="https://www.autism.org.uk/advice-and-guidance/stories/stories-from-the-spectrum-alexis-quinn">limited understanding of autism</a>. They can also be subjected to clinical “treatment” that has the same <a href="https://catalystjournal.org/index.php/catalyst/article/view/29579/23427">questionable origin</a> as <a href="https://www.stonewall.org.uk/everything-you-need-know-about-conversion-therapy">gay conversion therapy</a>, and which guidance states <a href="https://www.ingentaconnect.com/contentone/bild/ijpbs/2022/00000012/a00101s1/art00001?crawler=true&mimetype=application/pdf">should not be used</a>.</p>
<p>The research supporting this approach, known as applied behaviour analysis (ABA), is often riddled with <a href="https://www.frontiersin.org/articles/10.3389/fpsyg.2021.676303/full">undeclared conflicts of interest</a>. Those who experience ABA have been found to be <a href="https://www.emerald.com/insight/content/doi/10.1108/AIA-08-2017-0016/full/html">more likely to experience symptoms of post-traumatic stress disorder</a> (PTSD).</p>
<p>Worse, some autistic people in residential care have experienced <a href="https://www.theguardian.com/society/2019/mar/28/parents-of-former-mendip-house-resident-claim-they-were-misled-over-scale-of-abuse">abuse by staff</a>. In the most severe cases, <a href="https://www.theguardian.com/society/2018/may/30/seven-years-winterbourne-view-learning-disabled-people-abuse">autistic people have died</a> due to abusive and/or negligent treatment while in residential care. </p>
<h2>A cumulative impact throughout life</h2>
<p>In every area of government services, we found policies that failed to account for known autistic needs. These failures have a cumulative impact throughout life. A lack of accommodations in education leads to less likelihood of securing accessible employment and greater reliance on benefits and social housing. </p>
<p>To improve this, the policy-making process needs to be made accessible to disabled people so that services meet our needs. This could include ensuring that consultation processes reach out to a broader range of autistic people, and then meet their needs to submit evidence.</p>
<p>It is also important that policy-makers put evidence from the autistic community ahead of evidence provided by non-autistic “experts” who fundamentally misunderstand autism, can have conflicts of interest, and thus can not speak on our behalf. </p>
<p>Autistic lives depend on it.</p><img src="https://counter.theconversation.com/content/202997/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Aimee Grant receives funding from UKRI, the Wellcome Trust and the Research Wales Innovation Fund. We wish to thank Dr Gemma Williams and Richard Woods, co-authors of the chapter this article is based on.</span></em></p><p class="fine-print"><em><span>Kathryn Williams receives funding for her PhD studentship from the Economic and Social Research Council. She is affiliated with Autistic UK CIC, where she is a voluntary non-executive director. </span></em></p>A review of government services has found that autistic people are being failed in health, education, employment, poverty and housing.Aimee Grant, Senior Lecturer in Public Health and Wellcome Trust Career Development Fellow, Swansea UniversityKathryn Williams, PhD Candidate, Cardiff UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2074012023-06-25T13:34:53Z2023-06-25T13:34:53ZMaking pride more inclusive means creating space for 2SLGBTQ+ people with disabilities<figure><img src="https://images.theconversation.com/files/532792/original/file-20230619-19-gs4r05.jpg?ixlib=rb-1.1.0&rect=27%2C0%2C4585%2C3070&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Volunteers carry a large rainbow flag during the 2019 Pride Parade in Toronto.</span> <span class="attribution"><span class="source">THE CANADIAN PRESS/Andrew Lahodynskyj</span></span></figcaption></figure><p>Pride month is a celebratory time for many queer people. It is an opportunity for greater visibility in the public sphere. Although 2SLGBTQ+ people are becoming more accepted, those living with disabilities still struggle to be seen and heard.</p>
<p>Queer disabled people, particularly those with invisible disabilities like autism, attention deficit hyperactivity disorder or obsessive-compulsive disorder, are sometimes faced with the complex decision of whether or not to come out. That would often mean battling false stereotypes that <a href="https://www.bbc.com/news/stories-55586657">disabled and autistic people cannot be queer</a>.</p>
<p>Previous studies have shown how <a href="https://doi.org/10.5772/intechopen.95964">mainstream queer spaces can be inaccessible and not accepting of disabled people</a>. For instance, in <a href="https://doi.org/10.1080%2F15532739.2019.1594484">one study</a> from the United States, LGBTQ+ autistic people reported: </p>
<blockquote>
<p>feeling “othered,” discredited [and] tolerated rather than accepted.</p>
</blockquote>
<p>As a consequence, some disabled people choose to avoid disclosing their disability in queer spaces to avoid negative responses and rejection. At the same time, disabled communities can lack supports appropriate for 2SLGTBQ+ people and <a href="https://doi.org/10.3390/ijerph17218080">even present homophobic attitudes</a>. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/532793/original/file-20230619-36266-4a5amn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A man in a wheelchair with people walking carrying placards." src="https://images.theconversation.com/files/532793/original/file-20230619-36266-4a5amn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/532793/original/file-20230619-36266-4a5amn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/532793/original/file-20230619-36266-4a5amn.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/532793/original/file-20230619-36266-4a5amn.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/532793/original/file-20230619-36266-4a5amn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/532793/original/file-20230619-36266-4a5amn.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/532793/original/file-20230619-36266-4a5amn.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">People with disabilities attending a Pride Parade in Santa Pola, Spain in July 2022. Mainstream queer spaces can be inaccessible and not accepting of disabled people.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<h2>Feeling like outsiders in their own communities</h2>
<p><a href="https://thesocietypages.org/ccf/2022/07/19/still-being-left-behind-the-intimate-lives-of-queer-disabled-people/">Through our research</a>, we have heard how 2SLGTBQ+ people with developmental and mental disabilities struggle to find space to explore their identities, meet intimate partners, find community and form a sense of belonging. However, despite these struggles, their desire for community was clear.</p>
<p>Some disabled people reported feeling like outsiders in queer spaces and communities. As a participant noted: “I didn’t really want to participate in queer spaces because I felt like an interloper. I felt like I did not belong.” </p>
<p>This feeling of exclusion is further accentuated by the fact that, as some of our participants highlighted, <a href="https://www.cbc.ca/radio/nowornever/accessibility-in-action-meet-people-fighting-for-access-to-a-full-life-1.6491088/i-m-queer-and-disabled-pride-isn-t-accessible-for-me-1.6497282">Pride events can be inaccessible to disabled people</a>.</p>
<p>Participants also spoke about wanting more representation of disabled and autistic people within queer spaces. One participant noted that most queer spaces “are very predominantly white and predominantly able-bodied, predominantly a certain beauty standard, and all those things…people with disabilities may or may not fit that criteria for the queer communities, especially as a romantic partner.”</p>
<p>People with disabilities can sometimes find queer spaces, like bars and dance clubs, inaccessible due to loud noises, lack of open spaces and strong scents. Connecting with the broader 2SLGBTQ+ community is challenging because <a href="http://dx.doi.org/10.13140/RG.2.2.16004.91528">2SLGBTQ+ events are not always welcoming to their needs</a>.</p>
<p>Such sentiments are echoed by other research. <a href="https://doi.org/10.1007/s10803-020-04696-w">In another study with autistic adults</a>, participants talked about how both the disabled and queer communities can sometimes ostracize autistic people rather than being “open-minded” and “accepting” spaces. </p>
<p>Having a community that supports and affirms your identities is important and <a href="https://doi.org/10.1093/heapro/dax016">good for mental health</a>. For those who are disabled and queer, being left out of 2SLGBTQ+ spaces means they do not receive the benefits of feeling like they belong. </p>
<p>More importantly, folks in the community remind us that real accessibility means more than building a ramp to access a building. Meaningfully inviting 2SLGTBQ+ people with disabilities involves non-disabled queer people doing their homework, making meaningful space and <a href="https://digitalcommons.wcl.american.edu/jgspl/vol28/iss3/2/?utm_source=digitalcommons.wcl.american.edu%2Fjgspl%2Fvol28%2Fiss3%2F2&utm_medium=PDF&utm_campaign=PDFCoverPages">addressing their own ableism</a>.</p>
<figure class="align-center ">
<img alt="A man in a wheelchair waves a rainbow flag while other people wave him on." src="https://images.theconversation.com/files/532772/original/file-20230619-23-89ut46.jpg?ixlib=rb-1.1.0&rect=27%2C32%2C3602%2C2383&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/532772/original/file-20230619-23-89ut46.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/532772/original/file-20230619-23-89ut46.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/532772/original/file-20230619-23-89ut46.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/532772/original/file-20230619-23-89ut46.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/532772/original/file-20230619-23-89ut46.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/532772/original/file-20230619-23-89ut46.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">A man in a wheelchair at the Toronto Pride Parade in June 2019. LGBTQ+ people with disabilities can sometimes feel like outsiders in the community.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<h2>Making queer spaces more accessible</h2>
<p>Participants from <a href="https://doi.org/10.1007/s10803-020-04696-w">various</a> <a href="https://doi.org/10.1080%2F15532739.2019.1594484">studies</a> have shared suggestions for making queer spaces more accessible. This includes creating <a href="https://www.autismbc.ca/blog/intro-to-sensory-friendly/">sensory-friendly spaces</a>: for instance, offering noise-free areas, avoiding specific colours and patterns, reducing visual overload, relying on natural or dim lighting or creating opportunities for participation through online spaces.</p>
<p>Above all, <a href="https://www.cbc.ca/news/canada/saskatchewan/pride-2023-saskatchewan-accessibility-1.6860787">people want access to more spaces where disabled people can feel safe and included</a>. They do not wish to have to fight for the right to exist in queer spaces safely.<br>
2SLGBTQ+ spaces should inherently be where people can learn more about different identities and build communities, not spaces of exclusion. </p>
<p>There is a need for greater solidarity between queer, neurodiverse and disabled communities. More importantly, it is essential for queer communities to be proactive. Why wait until someone requests accommodations to take action? Instead, we should educate ourselves about disability, access and accessibility.</p>
<p>Disabled people should be meaningfully invited into queer spaces. It is crucial to have spaces and opportunities that are inclusive and celebratory for everyone. Such were the intentions of activists like <a href="https://www.them.us/story/brenda-howard">Brenda Howard</a> who paved the way for the Pride celebrations we have today. Intrinsically we are a community full of diversity, and that diversity is something to celebrate.</p><img src="https://counter.theconversation.com/content/207401/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Alan Santinele Martino receives funding from the Canadian Institutes of Health Research. </span></em></p><p class="fine-print"><em><span>Emily Coombs does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Queer disabled people struggle to be seen in queer spaces that often do not accommodate them.Alan Santinele Martino, Assistant Professor, Community Rehabilitation and Disability Studies, University of CalgaryEmily Coombs, Master's student, Werklund School of Education, University of CalgaryLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2079502023-06-22T16:04:29Z2023-06-22T16:04:29ZAutism: later-life diagnosis doesn’t mean lower quality of life – new research<figure><img src="https://images.theconversation.com/files/533130/original/file-20230621-17-ic6qq3.jpg?ixlib=rb-1.1.0&rect=18%2C0%2C6137%2C3238&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Our research suggests the age people find out they're autistic does not necessarily impact their quality of life afterward.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-illustration/autism-syndrome-person-autistic-social-disorder-1338562577">Lightspring/ Shutterstock</a></span></figcaption></figure><p>A growing number of people are discovering that they are autistic in adulthood. This is especially the case among women, with a number of celebrities – such as model and reality star <a href="https://www.bbc.co.uk/iplayer/episode/m001k31t/christine-mcguinness-unmasking-my-autism">Christine McGuinness</a> and TV presenter <a href="https://www.theguardian.com/society/2021/nov/16/tv-presenter-melanie-sykes-announces-life-affirming-autism-diagnosis">Melanie Sykes</a> – sharing their experiences of being diagnosed as an adult. </p>
<p>Having an autism diagnosis in adulthood can <a href="https://www.autism.org.uk/advice-and-guidance/topics/benefits-and-money/benefits/benefits-you-can-get">have benefits</a>, but it has left some wondering what life would have been like if they’d found out earlier. In our <a href="https://journals.sagepub.com/doi/10.1177/13623613231173056">latest study</a>, we investigated whether getting a diagnosis at a younger age is linked to a better quality of life as an adult. </p>
<p>We found no link between the age people received a diagnosis and how they felt about their lives. </p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1635657120245862403"}"></div></p>
<p>To conduct our study, we asked 300 autistic adults to report the age at which they learned they were autistic and detailed information about their backgrounds, including their age, sex, ethnicity, relationship status, income, education level and whether they had any mental health conditions. Recording these details was crucial as all are <a href="https://onlinelibrary.wiley.com/doi/full/10.1002/aur.1965">linked to quality of life</a>. </p>
<p>We also measured participants’ self-reported level of autistic personality traits. Approximately 43% of participants were male, and around 90% of participants were white. Around half of the people in our sample learned they were autistic as a child, while the other half found out as adults.</p>
<p>Participants then rated how they felt about their lives by answering questions based on the World Health Organization’s <a href="https://www.cambridge.org/core/journals/psychological-medicine/article/abs/development-of-the-world-health-organization-whoqolbref-quality-of-life-assessment/0F50596B33A1ABD59A6605C44A6A8F30">quality of life</a> scale. Some of the questions they were asked included: “To what extent do you feel your life to be meaningful?” And: “How satisfied are you with the support you get from your friends?”</p>
<figure class="align-center ">
<img alt="A young woman speaks to her older male doctor." src="https://images.theconversation.com/files/533132/original/file-20230621-26-ww0y51.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/533132/original/file-20230621-26-ww0y51.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/533132/original/file-20230621-26-ww0y51.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/533132/original/file-20230621-26-ww0y51.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/533132/original/file-20230621-26-ww0y51.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/533132/original/file-20230621-26-ww0y51.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/533132/original/file-20230621-26-ww0y51.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">We found no link between the age people found out and how they felt about their lives.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/doctor-speaking-cheerful-young-patient-his-168172643">wavebreakmedia/ Shutterstock</a></span>
</figcaption>
</figure>
<p>Our results confirmed that the age a participant was diagnosed or became aware of being autistic (if they were diagnosed very young and told later by their parent) was not linked to their quality of life as an adult. This was true when the influence of other factors was considered in our analysis.</p>
<p>Our research also brought up an unexpected finding. Autistic women, after accounting for age, reported a better quality of life than men overall. We aren’t sure what might explain this finding, so it will be important for future studies to investigate this difference. </p>
<p>While in recent years there’s been a much-needed growth in research investigating <a href="https://neurosciencenews.com/asd-mental-health-21735/#:%7E:text=Summary%3A%20Women%20on%20the%20autism,harm%20than%20males%20with%20autism.">mental health in autistic women</a>, this finding suggests we must not overlook the needs of autistic men who might be struggling with their mental health.</p>
<p>Our study also provided further support for the <a href="https://doi.org/10.1016/S2215-0366(19)30289-5">link between autism and poor mental health</a>. Autistic people who had other conditions, such as ADHD, anxiety or depression, reported a much lower quality of life than those who had none. These results reinforce the need for <a href="https://acamh.onlinelibrary.wiley.com/doi/full/10.1111/jcpp.13678">more targeted, personalised support</a> to improve autistic people’s mental health and quality of life. </p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1653360446781399040"}"></div></p>
<p>Our findings also reflect a fundamental shift that’s required in autism research. For a long time, autism was thought about as a childhood condition. Many people still think this way. What people may not realise is that most autistic people in the UK, for example, <a href="https://www.autistica.org.uk/our-research/research-projects/investigating-autistic-adults-across-their-lives-and-into-old-age">are adults</a>.</p>
<p>With an ageing society, this pattern may increase over the next few decades. As such, it’s important to improve awareness that autism isn’t just a childhood condition. This will ensure that both research and practical support receive proportionate funding, which has historically been lacking for autistic adults. It may also help more people to get the support they need. </p>
<p>It will also be vital for future research to focus on highlighting <a href="https://journals.sagepub.com/doi/full/10.1177/13623613221146440">the strengths that autistic adults may have</a>, as well as looking at <a href="https://journals.sagepub.com/doi/10.1177/1362361320908410">the difficulties they may face</a>. This will help identify the best ways to support autistic people throughout their lives and move beyond a one-size-fits-all approach to care.</p><img src="https://counter.theconversation.com/content/207950/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Lucy Anne Livingston receives or has received funding from the UKRI Medical Research Council, The Waterloo Foundation and the Economic and Social Research Council. </span></em></p><p class="fine-print"><em><span>Punit Shah receives or has received funding from the UKRI Medical Research Council and the Economic and Social Research Council.</span></em></p><p class="fine-print"><em><span>Florence Leung does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>A growing number of people are finding out they are autistic in adulthood.Florence Leung, Postdoctoral Research Assistant, University of BathLucy Anne Livingston, Lecturer in Psychology, King's College LondonPunit Shah, Associate Professor of Psychology, University of BathLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2052252023-05-23T01:06:22Z2023-05-23T01:06:22ZAround half of kids getting neurodevelopmental assessment show signs of mental distress. We can support them better<figure><img src="https://images.theconversation.com/files/527469/original/file-20230522-17-apv8ms.jpg?ixlib=rb-1.1.0&rect=20%2C20%2C6853%2C4544&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/april-24-2023-assessment-childrens-mental-2293862119">Shutterstock</a></span></figcaption></figure><p>Neurodevelopmental conditions, including autism and attention deficit hyperactivity disorder (ADHD), affect <a href="https://acamh.onlinelibrary.wiley.com/doi/full/10.1002/jcv2.12048">one in ten people</a>. While the primary focus is often on <a href="https://theconversation.com/wondering-about-adhd-autism-and-your-childs-development-what-to-know-about-getting-a-neurodevelopmental-assessment-197528">these diagnoses</a>, worrying research shows people with neurodevelopmental conditions are at a much higher risk of experiencing serious <a href="https://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(19)30289-5/fulltext">mental health</a> concerns. They may also find it particularly challenging to access mental health support. </p>
<p>For instance, when young autistic people seek help from youth mental health organistion <a href="https://headspace.org.au/">headspace</a>, they often present with <a href="https://journals.sagepub.com/doi/pdf/10.1177/1362361318823925">severe anxiety and depression</a>. Importantly, these mental health symptoms are one of the most important contributors to their disability in daily life.</p>
<p>We wanted to get a better understanding of how early mental health symptoms emerge. Our new study, published <a href="https://www.sciencedirect.com/science/article/pii/S0165032723005591">this week</a>, assessed mental health symptoms in young children attending their first neurodevelopmental <a href="https://journals.sagepub.com/doi/10.1177/13623613221145868">assessment</a>. This study used the <a href="https://bmjopen.bmj.com/content/13/2/e069500">Sydney Child Neurodevelopment Research Registry</a>, an ongoing program focused on child development clinical services. </p>
<p>The results surprised us. About half of the children showed clinical levels of mental health symptoms and were in need of support. This risk increased to nearly 70% for children with multiple diagnoses. </p>
<p>So, when children first present with neurodevelopmental concerns, they are also likely to have mental health concerns. More work needs to be done to ensure mental health and neurodevelopment needs are addressed early. Neurodevelopmental assessments may present an opportunity to combine efforts.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/what-is-early-intervention-for-infants-with-signs-of-autism-and-how-valuable-could-it-be-205839">What is 'early intervention' for infants with signs of autism? And how valuable could it be?</a>
</strong>
</em>
</p>
<hr>
<h2>Why the high rates?</h2>
<p>In our study, 232 families were asked about their child’s mental health when they first attended a broader <a href="https://theconversation.com/wondering-about-adhd-autism-and-your-childs-development-what-to-know-about-getting-a-neurodevelopmental-assessment-197528">neurodevelopmental assessment</a>. The reasons for the <a href="https://linkinghub.elsevier.com/retrieve/pii/S2215-0366(19)30289-5">higher than average</a> mental health concerns in people with neurodevelopmental conditions are complex. </p>
<p>People with neurodevelopmental conditions can face greater challenges related to <a href="https://www.thelancet.com/journals/lanchi/article/PIIS2352-4642(22)00247-4/fulltext">social determinants of health</a>, such as unstable housing, financial difficulties, family separation and conflict, social isolation and unemployment. </p>
<p>Other social factors, including stigma, discrimination, peer rejection and exclusion in communities, and social, <a href="https://pubmed.ncbi.nlm.nih.gov/32170919/">occupational</a>, and <a href="https://www.cambridge.org/core/journals/the-british-journal-of-psychiatry/article/psychiatric-disorders-diagnosed-in-adolescence-and-subsequent-longterm-exclusion-from-education-employment-or-training-longitudinal-national-birth-cohort-study/328FC8361076922764455B54880C0320">educational support services</a> also play a role. </p>
<p>Some neurodevelopmentally specific factors can also increase risk for mental health concerns. Neurodevelopmental conditions can be associated with difficulties with <a href="https://www.nature.com/articles/mp201775">attention, impulsivity, problem solving</a> and <a href="https://linkinghub.elsevier.com/retrieve/pii/S0165-0327(20)33019-6">working under stress</a>. There may be <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5984099/">differences in sensory processing</a> and <a href="https://link.springer.com/article/10.1007/s10803-023-05963-2">concrete and repetitive thinking</a>. Such factors can make emotion regulation more challenging. </p>
<p>Finally, some <a href="https://www.nature.com/articles/s41588-022-01057-4">genes</a> that are linked to conditions such as autism and ADHD are also linked to other mental health conditions. </p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1646287086977261611"}"></div></p>
<h2>In the ‘too hard’ basket?</h2>
<p>So, mental health care should be central to health supports for people with neurodevelopmental conditions. Unfortunately, they experience many barriers to accessing <a href="https://www.cambridge.org/core/journals/epidemiology-and-psychiatric-sciences/article/how-should-we-support-young-people-with-asd-and-mental-health-problems-as-they-navigate-the-transition-to-adult-life-including-access-to-adult-healthcare-services/E6BB5AA6688F1E146FB9A59978AFA8E4">care</a>. These include: </p>
<ul>
<li><p>A lack of professional focus and training in mental health that takes <a href="https://link.springer.com/article/10.1007/s40489-020-00226-7">neurodiversity into account</a>. </p></li>
<li><p>Incorrect beliefs from professionals that neurodiverse people may be <a href="https://journals.sagepub.com/doi/10.1177/13591045231155990?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%20%200pubmed">too complex to benefit</a> from standard assessments and supports for mental health. Yet, common tools for <a href="https://www.sciencedirect.com/science/article/abs/pii/S0165178120302973?via%3Dihub">depression</a> and <a href="https://onlinelibrary.wiley.com/doi/10.1002/aur.2572">anxiety</a> have been shown to work well.</p></li>
<li><p>Limited evidence with few trials of <a href="https://molecularautism.biomedcentral.com/articles/10.1186/s13229-021-00418-w">psychological therapies</a> for mental health focused on or including neurodiverse people.</p></li>
<li><p>A complex government structure and hard-to-navigate referral pathways for funding, services and <a href="https://www.ndis.gov.au/understanding/how-ndis-works/mental-health-and-ndis#what-is-psychosocial-disability">inclusion</a> that separate disability and mental health care.</p></li>
<li><p>Stigma and discrimination where needs are overlooked because of a neurodiversity diagnosis. Social anxiety or <a href="https://www.liebertpub.com/doi/10.1089/cap.2014.0024?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%20%200pubmed">depressive symptoms</a> may be too easily attributed to social interaction difficulties or flatness of expression associated with autism. Anxiety and worry may be too easily attributed to executive function and emotional regulation difficulties associated with ADHD. </p></li>
<li><p>Access and cost can make it very hard to see a mental health professional, such as a psychologist. You might be able to get National Disability Insurance Scheme (NDIS) support for needs specific to autism, but mental health is considered separately. </p></li>
</ul>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/wondering-about-adhd-autism-and-your-childs-development-what-to-know-about-getting-a-neurodevelopmental-assessment-197528">Wondering about ADHD, autism and your child’s development? What to know about getting a neurodevelopmental assessment</a>
</strong>
</em>
</p>
<hr>
<h2>Getting in early</h2>
<p>A failure to provide mental health supports when symptoms first develop results in <a href="https://linkinghub.elsevier.com/retrieve/pii/S2215-0366(23)00058-5">more acute and chronic issues</a>. Individuals present more frequently to acute mental health services, have <a href="https://onlinelibrary.wiley.com/doi/10.1111/jpc.15535">more emergency service presentations</a> and more inpatient admissions for <a href="https://www.thelancet.com/journals/lanwpc/article/PIIS2666-6065(23)00024-X/fulltext">complex and chronic mental health problems</a>. </p>
<p>Sadly, autistic people also have a <a href="https://www.cambridge.org/core/journals/psychological-medicine/article/abs/individual-risk-and-familial-liability-for-suicide-attempt-and-suicide-in-autism-a-populationbased-study/BDB3E4ADE03D99F12F7B1BCD28B4A6B1">tenfold higher risk of suicide</a>, compared to people without neurodevelopmental conditions.</p>
<p>That’s why this study is important. Over half of the children in our study had clinically elevated internalising symptoms, including anxiety, depression, loneliness and withdrawal. This increased to nearly 70% of children if they received more than one diagnosis. These symptoms were more common in girls. </p>
<p>Studies show such problems get <a href="https://www.sciencedirect.com/science/article/abs/pii/S0006322301011295">more frequent as children age</a>.
There is an opportunity to address mental health needs early before these problems become more complex. When children receive their first neurodevelopmental assessment, <a href="https://pubmed.ncbi.nlm.nih.gov/36725093/">usually after waiting years</a>, they should have access to the right supports for lifelong development. </p>
<p>The federal government has commissioned a <a href="https://www.health.gov.au/our-work/national-roadmap-to-improve-the-health-and-mental-health-of-autistic-people">mental health strategy</a> specifically for autism. State-specific supports include New South Wales’ new mental health hubs for people with <a href="https://www.health.nsw.gov.au/mentalhealth/Pages/intellectual-disability-mental-health-hubs.aspx#:%7E:text=Mental%20Health%20Hubs-,About%20the%20hubs,are%20funded%20by%20NSW%20Health.">intellectual disability</a>. </p>
<h2>More needed</h2>
<p>These latest steps are positive. But a fully integrated strategy needs to include all those with neurodevelopmental conditions. Our research shows children with multiple neurodevelopmental conditions are at greatest risk and there’s a need to provide mental health supports to these children as early as possible.</p>
<p>Individuals, families and the community will need access to supports and resources that help them to navigate, understand and be empowered in their mental health care. This will be likely facilitated by technology, personalised care methods and community engagement in co-design of these pathways. The assessment and support process provides a unique opportunity for education and engagement with other service providers and community hubs that can promote lifelong well being. </p>
<p>It will be critical that state and federal governments work in partnership to ensure mental health care can be provided across disability, education and health systems.</p><img src="https://counter.theconversation.com/content/205225/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Our study shows when children first present for neurodevelopmental assessment they are also likely to have mental health concerns.Adam Guastella, Professor and Clinical Psychologist, Michael Crouch Chair in Child and Youth Mental Health, University of SydneyKelsie Boulton, Postdoctoral Research Fellow, University of SydneyNatalie Silove, Associate professor, University of SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2058392023-05-22T05:03:38Z2023-05-22T05:03:38ZWhat is ‘early intervention’ for infants with signs of autism? And how valuable could it be?<figure><img src="https://images.theconversation.com/files/527402/original/file-20230522-27-y07zqy.jpg?ixlib=rb-1.1.0&rect=50%2C30%2C6659%2C4436&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/happy-excited-baby-laughing-mom-face-2130115187">Shutterstock</a></span></figcaption></figure><p>Most early support programs for autistic children (also called “early interventions”) are provided after diagnosis. But long <a href="https://theconversation.com/autism-and-adhd-assessment-waits-are-up-to-2-years-long-what-can-families-do-in-the-meantime-203232">waiting times</a> can leave families feeling stressed that they are “missing out” on critical opportunities to support their child. </p>
<p>With last week’s government announcement of A$22 million for two <a href="https://ministers.dss.gov.au/media-releases/11266">new pilot</a> programs, support for babies and their parents is set to become more available – and potentially ease demand for National Disability Insurance Scheme (NDIS) supports. </p>
<p>Our team recently consulted with more than 200 community members, including autistic and non-autistic parents, clinical professionals, and researchers to understand their views on what very early supports might look like.</p>
<p>So what do families need to know about these types of early support and are they worth the hype? </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/autism-and-adhd-assessment-waits-are-up-to-2-years-long-what-can-families-do-in-the-meantime-203232">Autism and ADHD assessment waits are up to 2 years' long. What can families do in the meantime?</a>
</strong>
</em>
</p>
<hr>
<h2>Increasing support needs</h2>
<p>Currently 88,617 children under seven are supported by the <a href="https://www.ndis.gov.au/about-us/publications/quarterly-reports">NDIS</a>. Some 10% of boys and 4% of girls aged five to seven access the scheme and half of all child participants are registered for autism supports. </p>
<p>The substantial need for services has led government to <a href="https://www.abc.net.au/news/2023-05-10/ndis-eligibility-disability-services-bill-shorten/102326822">consider other options</a> for supporting neurodivergent children. Rather than waiting until after an autism diagnosis, very early supports for infants may promote better outcomes while also taking pressure off an overloaded system. </p>
<p>Government interest in very early support programs has increased following <a href="https://jamanetwork.com/journals/jamanetworkopen/article-abstract/2803121">research</a> suggesting that for every $1 invested in supporting neurodivergent infants and parents, the NDIS could save at least $3 down the track. The Australian <a href="https://jamanetwork.com/journals/jamapediatrics/article-abstract/2784066">study</a> modelled service costs through to children’s 13th birthday. </p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1658758868992937984"}"></div></p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/therapy-for-babies-showing-early-signs-of-autism-reduces-the-chance-of-clinical-diagnosis-at-age-3-167146">Therapy for babies showing early signs of autism reduces the chance of clinical diagnosis at age 3</a>
</strong>
</em>
</p>
<hr>
<h2>What are autism supports for babies?</h2>
<p>Supports provided very early in life, before a diagnosis, are sometimes called “pre-emptive interventions”. The idea is that a relatively small amount of support early on can help prevent future difficulties, as families are better equipped to understand their baby’s skills and needs and respond supportively. </p>
<p>Until now, there has been very limited support available for families before diagnosis. Several different models have been developed and <a href="https://theconversation.com/therapy-for-babies-showing-early-signs-of-autism-reduces-the-chance-of-clinical-diagnosis-at-age-3-167146">trialled</a>, but these are not widely available in the community. </p>
<p>Our work with the autistic community has identified key recommendations for supports for neurodivergent infants, to assist parents to make informed decisions about what is best for their child.</p>
<p>Because these very early programs are aimed at supporting such young babies, the work should be with the parents, rather than with the child. Supports can involve parent training and education focused on helping parents understand and support their child. Parents might learn strategies and ways of interacting that they can then use at home with their little one. </p>
<p>An example of this might be a clinician and parent observing an infant together and practising noticing their communication cues, or following the infant’s lead and engaging together in activities the infant is interested in (regardless of whether these are “usual” for neurotypical children). </p>
<p>This type of support can be valuable because neurodivergent children can communicate in different ways, and parents might need some help to understand what their baby wants and needs. </p>
<p>Becoming a new parent brings many changes, and insights from the autistic community indicate parents of neurodivergent children may require additional support. Many parents of autistic children may also be neurodivergent or exhibit autistic traits, including sensory sensitivity.</p>
<p>But this won’t look the same for everyone. Supports should be tailored according to what the infant and family <a href="https://theconversation.com/new-national-autism-guideline-will-finally-give-families-a-roadmap-for-therapy-decisions-199786">needs</a>. The amount of support families need will also vary. It’s got to be <a href="https://theconversation.com/dont-forget-play-3-questions-can-help-balance-fun-with-supports-and-therapy-for-autistic-children-200920">balanced</a> so that children can continue to play and participate in the community without the burden of attending too many appointments. </p>
<p>But not all babies who show early signs of neurodivergence will be autistic. Ideally, support provided will be something that is helpful for any child. Community members told us that programs for infants should aim to foster an enriching and supportive environment around the child – promoting secure attachment and supporting infants as they grow into happy, healthy children (and adults).</p>
<p>Similarly, supports should not be aimed at making children appear neurotypical, trying to “fix” or eliminate autism. Rather the aim should be to promote understanding of a baby as an individual, with their own unique strengths and ways of communicating.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/527405/original/file-20230522-17-lbshhv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="father and small child play on living room rug with coloured toys" src="https://images.theconversation.com/files/527405/original/file-20230522-17-lbshhv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/527405/original/file-20230522-17-lbshhv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/527405/original/file-20230522-17-lbshhv.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/527405/original/file-20230522-17-lbshhv.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/527405/original/file-20230522-17-lbshhv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/527405/original/file-20230522-17-lbshhv.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/527405/original/file-20230522-17-lbshhv.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">More research is needed into what difference early intervention can make to development.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/black-dad-toddler-son-playing-on-1070794307">Shutterstock</a></span>
</figcaption>
</figure>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/new-national-autism-guideline-will-finally-give-families-a-roadmap-for-therapy-decisions-199786">New national autism guideline will finally give families a roadmap for therapy decisions</a>
</strong>
</em>
</p>
<hr>
<h2>What does the evidence say?</h2>
<p>This is a relatively new area of research and evidence regarding the effectiveness of supports is still emerging. </p>
<p>An international review of 13 studies reported <a href="https://journals.sagepub.com/doi/full/10.1177/13623613211050433">mixed outcomes</a> with supports leading to an increase in parents’ use of strategies – but this only translated to an improvement in infants’ communication for those who used the strategies consistently. A second review found <a href="https://onlinelibrary.wiley.com/doi/full/10.1002/aur.2924">low to moderate quality evidence</a> overall. </p>
<p>An Australian clinical trial with 103 infants and parents, which some of our team were involved in, showed improvements in communication and a <a href="https://jamanetwork.com/journals/jamapediatrics/article-abstract/2784066">positive impact</a> on developmental outcomes. This study helped inform an <a href="https://www.ndis.gov.au/news/9068-media-release-minister-pilot-program-trial-support-infants-showing-early-behavioural-signs-autism">initial pilot</a> of similar supports in Western Australia, and is the basis of recent <a href="https://jamanetwork.com/journals/jamanetworkopen/article-abstract/2803121">reports</a> of cost savings.</p>
<p>While there is promising local evidence of benefits for one model of very early support, research in this area is ongoing.</p>
<h2>What’s next?</h2>
<p>The announcement of new pilot programs for babies showing early signs of neurodivergence creates an opportunity for much-needed further research regarding the potential benefits of these very early supports across different contexts and service models. </p>
<p>It will be important for policymakers to consider implementation strategies to help parents use the support strategies at home in order to maximise their benefits. </p>
<p>Autistic community involvement will also be essential to inform the roll out of supports if the program is expanded – to ensure they genuinely benefit those who need them.</p><img src="https://counter.theconversation.com/content/205839/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Cathy Bent has received funding for the work reported here from the International Society for Autism Research (INSAR) and La Trobe University ABC Early Career Researchers Award Scheme (Healthy People, Families and Communities Research Theme), and funding for related and other research, including salary support, from the Australian Government Department of Social Services (DSS). She has also received fees for training on the Autism Diagnostic Observation Schedule (ADOS). </span></em></p><p class="fine-print"><em><span>Alexandra Aulich has received funding for the work reported here, including salary support, from the International Society for Autism Research (INSAR) and La Trobe University (Healthy People, Families and Communities Research Theme). She has also received salary support through coordination of training on the Autism Diagnostic Observation Schedule (ADOS).</span></em></p><p class="fine-print"><em><span>Christos Constantine identifies as autistic. He has worked at La Trobe University to conduct the research reported here, for which he received salary support from grants from the International Society for Autism Research (INSAR) and La Trobe University (Healthy People, Families and Communities Research Theme).</span></em></p><p class="fine-print"><em><span>Kristelle Hudry has received funding for the work reported here from the International Society for Autism Research (INSAR) and La Trobe University (Healthy People, Families and Communities Research Theme), and funding for related and other research from the Australian Government Department of Social Services (DSS), and National Disability Insurance Agency (NDIA), the AutismCRC, Autism Queensland, JVCKENWOOD Corporation, La Trobe University (School of Psychology and Public Health, and Understanding Disease Research Focus Area), and the Medical Research Future Fund. She has also received fees in her previous role as Associate Editor for Research in Developmental Disabilities (RIDD) and for training on the Autism Diagnostic Observation Schedule (ADOS).</span></em></p>Though more research is needed, the idea is a relatively small amount of support early on can help prevent future difficulties.Cathy Bent, Research Fellow, La Trobe UniversityAlexandra Aulich, Senior Project Coordinator, CAPTeam, La Trobe UniversityChristos Constantine, Casual academic, La Trobe UniversityKristelle Hudry, Associate Professor of Developmental Psychology, La Trobe UniversityLicensed as Creative Commons – attribution, no derivatives.