tag:theconversation.com,2011:/au/topics/early-intervention-5252/articlesearly intervention – The Conversation2023-05-22T05:03:38Ztag: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>
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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>
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<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>
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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>
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<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>
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<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>
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<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>
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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>
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<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.tag:theconversation.com,2011:article/1737292021-12-15T03:29:00Z2021-12-15T03:29:00ZEarly intervention for psychosis might cost more initially but delivers a greater return on investment<figure><img src="https://images.theconversation.com/files/437416/original/file-20211214-17-wy1osm.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://unsplash.com/photos/Hb4L_CrqjAU">Keagan Henman/Unsplash</a></span></figcaption></figure><p><a href="https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/psychosis">Psychotic illnesses</a> such as schizophrenia cause severe distress and suffering for people who experience them and for their families.</p>
<p>All too often, these illnesses prevent those affected from completing education, starting work or keeping a job, and participating in their communities.</p>
<p>This can lead to impoverished lives and premature death, from suicide or preventable physical health conditions. People with psychotic illnesses <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2951588/">die up to two decades earlier</a> than <a href="https://pubmed.ncbi.nlm.nih.gov/28237639/">those unaffected</a> by these conditions. </p>
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Read more:
<a href="https://theconversation.com/physical-health-ignored-in-people-with-mental-illness-69040">Physical health ignored in people with mental illness</a>
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<p>These poor outcomes aren’t just part and parcel of the illness. Applying the strategies used to treat other diseases – such as early diagnosis and intensive early-stage care – can prevent psychotic illnesses from progressing or becoming life-long conditions. </p>
<p>Such care may be more costly than standard, delayed mental health care. But when you consider the economic gains from lower levels of disability, early intervention for psychosis delivers a substantial return on investment. </p>
<h2>Fixing an outdated system</h2>
<p>Mental health care reforms for psychosis started in Melbourne <a href="https://psycnet.apa.org/record/1996-04727-008">more than 30 years ago</a>. </p>
<p>At the time, standard care for those experiencing their first episode of a psychotic illness started late and often resulted in traumatic experiences for the young person, demoralisation and increased risk of suicide. </p>
<p>Standard mental health services were dominated by middle-aged patients with long-term illness. Treatments were crude and limited, focusing on managing symptoms.</p>
<h2>What were the goals of early intervention?</h2>
<p>Early intervention for young people with psychosis offered hope for recovery through early diagnosis, combined with comprehensive multi-disciplinary team-based care. This included psychiatrists, psychologists, social workers, occupational therapists and others.</p>
<p>These services would be sustained during the critical period of the early years after diagnosis. </p>
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<img alt="Young person in pink shoes sits in a waiting room." src="https://images.theconversation.com/files/437422/original/file-20211214-21-rme8uw.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/437422/original/file-20211214-21-rme8uw.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/437422/original/file-20211214-21-rme8uw.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/437422/original/file-20211214-21-rme8uw.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/437422/original/file-20211214-21-rme8uw.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/437422/original/file-20211214-21-rme8uw.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/437422/original/file-20211214-21-rme8uw.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">
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<span class="caption">Early intervention aimed to provide sustained early care, rather than just treating symptoms after they emerged.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/many-people-waiting-room-see-doctor-778331905">Shutterstock</a></span>
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<p>Early intervention offered a number of potential advantages over standard care, including:</p>
<ul>
<li>early diagnosis before the illness produces entrenched harm and disability</li>
<li>being treated with greater care and respect</li>
<li>being exposed to a hopeful and optimistic culture</li>
<li>having family included and supported</li>
<li>prioritising finding and maintaining work</li>
<li>experiencing less stigma and treatment-related trauma.</li>
</ul>
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Read more:
<a href="https://theconversation.com/welfare-to-work-a-different-approach-for-people-with-mental-illness-22293">Welfare to work: a different approach for people with mental illness</a>
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<p>Meanwhile, early intervention research <a href="https://www.mja.com.au/journal/2007/187/7/pace-specialised-service-young-people-risk-psychotic-disorders">created a scientific process</a> to identify those at risk of developing psychosis and intervening before the full onset of the illness. </p>
<p>The goal was to prevent the development of psychosis or, if it did emerge, delay or mitigate its impact.</p>
<h2>That was the idea, how has it worked in practice?</h2>
<p>Over the decades since, hundreds of early psychosis <a href="https://www.researchgate.net/publication/324906193_Comparison_of_Early_Intervention_Services_vs_Treatment_as_Usual_for_Early-Phase_Psychosis_A_Systematic_Review_Meta-analysis_and_Meta-regression">programs around the world</a> and an array of clinical trials have scientifically evaluated the effectiveness of early intervention for psychosis. </p>
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<img alt="Woman makes coffee at a cafe." src="https://images.theconversation.com/files/437420/original/file-20211214-23-pe4ik6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/437420/original/file-20211214-23-pe4ik6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=905&fit=crop&dpr=1 600w, https://images.theconversation.com/files/437420/original/file-20211214-23-pe4ik6.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=905&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/437420/original/file-20211214-23-pe4ik6.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=905&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/437420/original/file-20211214-23-pe4ik6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1138&fit=crop&dpr=1 754w, https://images.theconversation.com/files/437420/original/file-20211214-23-pe4ik6.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1138&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/437420/original/file-20211214-23-pe4ik6.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1138&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">One of the goals of early intervention is to help young people find and stay in work.</span>
<span class="attribution"><a class="source" href="https://unsplash.com/photos/RoC4Rsd_fvk">Yasamine June/Unsplash</a></span>
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<p>The programs target the early stages of illness and <a href="https://www.researchgate.net/publication/324906193_Comparison_of_Early_Intervention_Services_vs_Treatment_as_Usual_for_Early-Phase_Psychosis_A_Systematic_Review_Meta-analysis_and_Meta-regression">produce marked benefits in most patients</a>.</p>
<p>This approach has shown:</p>
<ul>
<li><p>a proportion of psychotic illnesses <a href="https://pubmed.ncbi.nlm.nih.gov/23870806/">can be delayed and some may even be prevented</a></p></li>
<li><p>many more people with psychosis <a href="https://www.cambridge.org/core/journals/the-british-journal-of-psychiatry/article/individual-placement-and-support-for-vocational-recovery-in-firstepisode-psychosis-randomised-controlled-trial/CB93C608C81C7A62642FBAAC20BB4D51">can return to work and school</a> and achieve <a href="https://www.cambridge.org/core/journals/epidemiology-and-psychiatric-sciences/article/employment-and-educational-outcomes-in-early-intervention-programmes-for-early-psychosis-a-systematic-review/21B73585CDA5379E98FBEAB8BD72DD53">very good outcomes</a> vocationally and socially</p></li>
<li><p>some cases of psychosis <a href="https://academic.oup.com/schizbullopen/article/1/1/sgaa015/5810294">can be managed with little or no medication</a>.</p></li>
</ul>
<p>Importantly, these programs are extremely popular with young people and families.</p>
<h2>But interventions can’t just stop suddenly</h2>
<p>The recovery achieved through early intervention must be sustained by continuing care throughout the critical early years of illness. </p>
<p>The first wave of research and reform in early intervention created programs that only offered this enhanced care for two years. When people were discharged and started receiving standard care, some of the gains <a href="https://jamanetwork.com/journals/jamapsychiatry/fullarticle/482772">were lost</a>. </p>
<p>More recent research has shown if the high quality of care provided by early psychosis programs is extended by a further three years (so five years in total), the <a href="https://onlinelibrary.wiley.com/doi/10.1002/wps.20456">gains are maintained</a>. </p>
<p>Some critics argue achieving these functional outcomes in early psychosis isn’t worthwhile if it requires effort to sustain it. </p>
<p>This is like arguing it’s not worthwhile to secure remission from cancer because if the treatment is withdrawn or downgraded too soon, relapse occurs.</p>
<figure class="align-center ">
<img alt="Young people in a boardroom put sticky notes on a white board." src="https://images.theconversation.com/files/437447/original/file-20211214-19-1sa55sq.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/437447/original/file-20211214-19-1sa55sq.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/437447/original/file-20211214-19-1sa55sq.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/437447/original/file-20211214-19-1sa55sq.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/437447/original/file-20211214-19-1sa55sq.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/437447/original/file-20211214-19-1sa55sq.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/437447/original/file-20211214-19-1sa55sq.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">Early psychosis care requires effort to sustain the outcomes.</span>
<span class="attribution"><a class="source" href="https://unsplash.com/photos/Oalh2MojUuk">Jason Goodman/Unsplash</a></span>
</figcaption>
</figure>
<p>The better way of interpreting the evidence is to recognise that for a substantial subset of patients, the illness is persistent or recurrent. Therefore, having achieved a positive early outcome through early intervention it is essential to make every effort to sustain it. </p>
<p>Most patients require more prolonged intervention than the original two-year window of early psychosis care.</p>
<h2>Early intervention saves money as well as futures</h2>
<p>More than 20 economic analyses of early intervention in psychosis have shown a substantial return on investment. </p>
<p>While early psychosis care naturally costs more than substandard delayed care in generic settings, the clinical outcomes are substantially better than standard care, as studies from <a href="https://ajp.psychiatryonline.org/doi/abs/10.1176/appi.ajp.2021.20111596">Denmark</a>, <a href="https://pubmed.ncbi.nlm.nih.gov/26481174/">the United States</a> and <a href="https://journals.sagepub.com/doi/full/10.1177/00048674211061285">Australia</a> show. </p>
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<strong>
Read more:
<a href="https://theconversation.com/youth-anxiety-and-depression-are-at-record-levels-mental-health-hubs-could-be-the-answer-154722">Youth anxiety and depression are at record levels. Mental health hubs could be the answer</a>
</strong>
</em>
</p>
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<p>And when accounting for the cost-savings from reduced rates of functional and social disability – which impairs family and social relationships – the overall economic outcomes are better, too. </p>
<p>This is due to a reduction in welfare dependence, greater tax receipts through employment, and reduced costs from suicide, offending and incarceration.</p>
<p>A <a href="https://www.health.gov.au/sites/default/files/documents/2021/11/evaluation-of-the-early-psychosis-youth-services-program-final-report-evaluation-of-the-early-psychosis-youth-services-program-final-report.pdf">recent evaluation</a> of the Australian Early Psychosis Youth Services (EPYS) concluded these health services were not cost-effective. </p>
<p>However, it did not actually conduct a cost-effectiveness study, merely listing costs alone. It also failed to take into account the economic benefits seen from employment, education and justice – and the authors acknowledged this shortcoming.</p>
<p>When considering the economics of early intervention, it’s important functional and social recovery is included – meaning a person can work or study and participate more fully in society – rather than just symptom recovery and direct health care costs. </p>
<p>Crucially, the evaluation found young people with psychosis and their families highly valued the early intervention approach, which helps them pursue their hopes and dreams of a meaningful and fulfilled life.</p>
<hr>
<p><em>If this article has raised issues for you, or if you’re concerned about someone you know, call Lifeline on 13 11 14.</em></p><img src="https://counter.theconversation.com/content/173729/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Pat McGorry works for Orygen which originally developed and jointly led with international colleagues the scaling up of early intervention for psychosis paradigm. Orygen now provides expert clinical support and supervision to the national EPYS system of early psychosis with support from the Australian Government.
I have received substantial funding from NHMRC, NIMH, Wellcome Trust and State and Federal governments to support my research and clinical work in early psychosis and youth mental health.
I am a Founding Director of headspace and of Australians for Mental Health.
I was the Founding President and now Treasurer of the IEPA: Early Intervention in Mental Health, which is the global organisation which has fostered early intervention in psychosis and other mental illnesses since 1997.
I am Editor in Chief of Early Intervention in Psychiatry.
</span></em></p><p class="fine-print"><em><span>Andrew Thompson is a Professor of Youth Mental Health at the Centre for Youth Mental Health at the University of Melbourne and Director of Specialist Services at Orygen clinical program and has conducted some of the studies in this article. He receives research funding in grants from NHMRC, NIHR, NIMH, the Wellcome Trust and the Victorian State Government. He has previously had support from the University of Melbourne, the MRC, the MQ foundation, Neuroscience Research Grants, the Telematics Trust and the Royal Melbourne Hospital. </span></em></p><p class="fine-print"><em><span>Ellie Brown has received funding from the Department of Health, the Wellcome Trust (UK), Western Victoria PHN, and the University of Melbourne. She is a Research Fellow at Orygen and has conducted some of the studies referenced in this article.</span></em></p><p class="fine-print"><em><span>Eóin Killackey receives funding from NHMRC, Norwegian Research Council and Wellcome Trust, and has in the past received funding from ARC and Australian Rotary Health. He is the Director of Research at Orygen and has conducted some of the studies referenced in the article. He is currently President of IEPA:Early Intervention in Mental Health</span></em></p>Early intervention programs for young people with psychosis might cost more initially, and require more intensive support for longer periods, but they’re worth the investment.Pat McGorry, Professor of Psychiatry, The University of MelbourneAndrew Thompson, Professor of youth mental health and consultant Psychiatrist, Orygen Youth Health, The University of MelbourneEllie Brown, Research Fellow, Orygen - the National Centre of Excellence in Youth Mental Health, The University of MelbourneEóin Killackey, Professor of Functional Recovery in Youth Mental Health, Centre for Youth Mental Health, The University of MelbourneLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1729802021-12-15T03:28:59Z2021-12-15T03:28:59ZHeadspace services for early psychosis have some benefits but aren’t cost-effective<figure><img src="https://images.theconversation.com/files/435813/original/file-20211206-21-rjkm3i.jpg?ixlib=rb-1.1.0&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/depressed-sad-young-female-standing-dark-1186386553">Shutterstock</a></span></figcaption></figure><p>Adolescence and early adulthood is a time for people to become more independent, complete their education, enter the workforce, form key relationships and develop lifelong health habits. </p>
<p>It’s also a period where mental health problems often first appear, which can disrupt the person’s development and potentially have a life-long impact.</p>
<p>Many experts argue <a href="https://www.mja.com.au/journal/2007/187/7/investing-youth-mental-health-best-buy">early intervention</a> for emerging mental health problems can prevent or reduce these disruptions.</p>
<p>But while the concept of early intervention during youth makes a lot of sense, the mental health outcomes from young people accessing Australia’s Headspace centres have been disappointing. </p>
<h2>Remind me, what is Headspace?</h2>
<p>Funded by the Commonwealth government, Headspace began in 2006 with ten centres, which are <a href="https://headspace.org.au/about-us/who-we-are/">described as</a>:</p>
<blockquote>
<p>a one-stop shop for young people who need help with mental health, physical health (including sexual health), alcohol and other drugs or work and study support.</p>
</blockquote>
<p>It has since expanded to more than 100 centres nationally and has been influential internationally.</p>
<h2>What do the evaluations say?</h2>
<p>An <a href="https://headspace.org.au/assets/Uploads/Evaluation-of-headspace-program.pdf">independent evaluation</a> in 2015 found the effects on mental health were “relatively weak”. </p>
<p>One of the <a href="https://theconversation.com/is-headspace-really-improving-young-peoples-mental-health-46398">explanations for this</a> was many Headspace clients received only one to two sessions of treatment, which was too little to be effective. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/is-headspace-really-improving-young-peoples-mental-health-46398">Is 'headspace' really improving young people's mental health?</a>
</strong>
</em>
</p>
<hr>
<p>However, a <a href="https://www.mja.com.au/journal/2021/216/2/social-and-occupational-outcomes-young-people-who-attend-early-intervention">more recent study</a> looked at the outcomes for young people who received two years of early intervention from Headspace. </p>
<p>This study found most of these young people showed no or only temporary improvement, suggesting other approaches are needed.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1460477519979638788"}"></div></p>
<h2>Another layer of services for more complex problems?</h2>
<p>Headspace services appear insufficient for young people with complex mental health problems. So <a href="https://www.mja.com.au/journal/2021/216/2/reality-mental-health-care-young-people-and-urgent-need-solutions">one suggestion</a> is to add a layer of more intensive mental health services for such young people. </p>
<p>These services would be modelled on early intervention services for young people with psychosis: a more severe mental illness in which the person loses contact with reality.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/budget-funding-for-beyond-blue-and-headspace-is-welcome-but-it-may-not-help-those-who-need-it-most-147661">Budget funding for Beyond Blue and Headspace is welcome. But it may not help those who need it most</a>
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</em>
</p>
<hr>
<p>But the Commonwealth government has already set up a number of <a href="https://headspace.org.au/our-services/earlypsychosis/headspace-early-psychosis/">Headspace early psychosis youth services</a>.</p>
<p>So the outcomes of these services need to be examined before youth services are expanded in this direction. </p>
<p>Although an independent evaluation of these services was completed in August 2020, it has only recently been <a href="https://www.health.gov.au/resources/foi-disclosure-log">released to the public under a Freedom of Information request</a>.</p>
<h2>What did the review find?</h2>
<p>The Headspace early psychosis program started in 2014 and has provided care in six locations across Australia to young people aged 12–25 who were experiencing a first episode of psychosis or were at very high risk of becoming psychotic. </p>
<p>The services are more intensive than provided to regular Headspace clients. They include a mobile assessment and treatment team, a continuing care team, a functional recovery program, group and family programs, and a peer support program.</p>
<p>The evaluation found the early psychosis youth program “was effective in achieving improved outcomes for some young people”. However, the services were not cost-effective. </p>
<figure class="align-center ">
<img alt="Young man sits with a therapist." src="https://images.theconversation.com/files/435815/original/file-20211206-13-wqpb4f.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/435815/original/file-20211206-13-wqpb4f.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/435815/original/file-20211206-13-wqpb4f.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/435815/original/file-20211206-13-wqpb4f.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/435815/original/file-20211206-13-wqpb4f.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/435815/original/file-20211206-13-wqpb4f.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/435815/original/file-20211206-13-wqpb4f.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">The Headspace early psychosis program improved outcomes for some young people.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/young-asian-man-male-has-mental-1888913212">Shutterstock</a></span>
</figcaption>
</figure>
<p>To assess cost-effectiveness, health economists often estimate the cost of giving a client an additional year of good quality life – <a href="https://www.pocog.org.au/qolfaq.aspx?question=24">a Quality Adjusted Life Year (or QALY)</a>. </p>
<p>A cost of up to A$50,000 to A$70,000 per QALY gained is generally considered a “good buy”. However, the Headspace program cost A$318,954 per QALY gained, which is way above this threshold. </p>
<p>The Headspace early psychosis services were also found to be less cost-effective than mental health services provided by state governments, where <a href="https://www1.health.gov.au/internet/publications/publishing.nsf/Content/mental-pubs-p-mono-toc%7Emental-pubs-p-mono-bas%7Emental-pubs-p-mono-bas-acc%7Emental-pubs-p-mono-bas-acc-cas">case managers</a> link young people with psychosis to services and provide support.</p>
<h2>Benefits appear short-lived</h2>
<p>It was hoped intensive early intervention programs might “bend the curve” and change the lifetime trajectory of illnesses such as schizophrenia. </p>
<p>The peak disability for schizophrenia occurs in mid-life. If intensive youth programs changed the trajectory of the illness, it was expected they might substantially improve mid-life outcomes and reduce the lifetime health and social costs. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/what-causes-schizophrenia-what-we-know-dont-know-and-suspect-102651">What causes schizophrenia? What we know, don't know and suspect</a>
</strong>
</em>
</p>
<hr>
<p>It is becoming clearer these early hopes were misplaced. The benefits of early intervention for psychosis are mostly short-lived. The long-term <a href="https://www.tandfonline.com/doi/abs/10.1080/09540261.2019.1643704">follow-up studies reveal</a> a dilution of the beneficial impact after the early intervention service ends, usually at two years. </p>
<p>After this time, young people who received the more expensive early intervention program <a href="https://academic.oup.com/schizophreniabulletin/article/44/6/1362/4823040">fare no better</a> than those who received “treatment as usual”, for example, the care provided by state governments for people with psychosis.</p>
<p>Studies are underway comparing longer treatment (up to five years) with standard treatment (up to three years) by early intervention teams, to find out if the early gains are maintained. </p>
<p>So far, these trials have <a href="https://www.cochrane.org/CD013287/SCHIZ_extending-treatment-time-specialist-mental-health-teams-better-people-recent-onset-psychosis">not found an improvement</a> in the numbers of people who recover, nor a reduction in hospitalisation. But more trials are needed.</p>
<h2>Where to next?</h2>
<p>If the outcomes of the Headspace early psychosis program are no better than state government mental services after a couple of years, and the costs of the Headspace program are proving unsustainable, the program will likely be wound back at some point in the future. </p>
<p>In the meantime, Commonwealth and state governments must develop a sustainable model of care that still achieves the best possible long-term outcomes. </p>
<p>This could mean <a href="https://www.alfredhealth.org.au/services/headspace">integrating Headspace services into existing state-based hospital mental health services</a>, to provide more coordinated care and case management, as <a href="https://www.newsweek.com/best-hospitals-2021/australia">Alfred Health</a> in Melbourne has done, with great success.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/youth-anxiety-and-depression-are-at-record-levels-mental-health-hubs-could-be-the-answer-154722">Youth anxiety and depression are at record levels. Mental health hubs could be the answer</a>
</strong>
</em>
</p>
<hr>
<img src="https://counter.theconversation.com/content/172980/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Anthony Jorm receives funding from the National Health and Medical Research Council. He is a Director of Mental Health First Aid International. He is Editor-in-Chief of Mental Health & Prevention. It is a member of the Alliance for the Prevention of Mental Disorders and the Association for Psychological Science. Anthony Jorm worked at Orygen Youth Health Research Centre from 2005-2012.</span></em></p><p class="fine-print"><em><span>Stephen Allison is a past clinical director of a state government regional child and youth mental health service.</span></em></p>It was hoped intensive early intervention programs might ‘bend the curve’ and change the lifetime trajectory of illnesses such as schizophrenia. But that doesn’t appear to be the case.Anthony Jorm, Professor emeritus, The University of MelbourneStephen Allison, Assoc. Professor of Child and Youth Psychiatry, Flinders UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1203312019-07-16T18:45:29Z2019-07-16T18:45:29ZTreating suspected autism at 12 months of age improves children’s language skills<figure><img src="https://images.theconversation.com/files/284210/original/file-20190716-173347-1yrfe7g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The theory is that if therapies are started early enough, it might be possible to alter the trajectory of autism.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/download/confirm/497291152?studio=1&size=medium_jpg">Shutterstock</a></span></figcaption></figure><p>Therapies given to infants before they receive a diagnosis of autism may lead to important improvements in their language abilities, according to our new research published today in the journal <a href="http://www.thelancet.com/journals/lanchi/article/PIIS2352-4642(19)30184-1/fulltext">Lancet Child and Adolescent Health</a>.</p>
<p>Children with autism typically begin therapy after receiving a diagnosis, which usually doesn’t occur until at least two years of age. </p>
<p>However, our new study suggests that starting therapy with 12-month-old infants who show early behavioural signs of autism may provide additional benefit. </p>
<p>Parents of toddlers who received six months of early therapy reported that their child understood an average of 37 more words, and spoke an average of 15 more words, than those who didn’t receive the therapy.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/what-causes-autism-what-we-know-dont-know-and-suspect-53977">What causes autism? What we know, don’t know and suspect</a>
</strong>
</em>
</p>
<hr>
<h2>How is autism diagnosed?</h2>
<p>Autism is diagnosed on the basis of behavioural differences. These include difficulties in social communication and interaction, and the presence of restricted and repetitive behaviours or interests. </p>
<p>A diagnosis based on behaviour is an inherently subjective task. The dividing line between “typical” and “atypical” is often blurry and can lead to considerable debate. </p>
<p>These challenges led to the development in 2018 of new <a href="https://theconversation.com/new-autism-guidelines-aim-to-improve-diagnostics-and-access-to-services-104929">Australian guidelines for autism assessment and diagnosis</a>, with the hope of addressing inconsistencies in autism diagnosis across Australia.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/new-autism-guidelines-aim-to-improve-diagnostics-and-access-to-services-104929">New autism guidelines aim to improve diagnostics and access to services</a>
</strong>
</em>
</p>
<hr>
<p>We don’t tend to diagnose autism until two years of age at the very earliest. Two is the earliest age at which a diagnosis is relatively stable. In other words, when a child receives a diagnosis of autism at age two, they’re also very likely to have that diagnosis if they’re reassessed in later childhood. This is not necessarily the case for children younger than two.</p>
<p>In most health systems around the world, including in Australia, therapy for children with autism typically begins after receiving a diagnosis. This is often a straight economic decision for a finite disability funding pool: the limited funding for therapies goes to children who need it most. And we can guarantee that children with a diagnosis of autism need these therapies. </p>
<p>But this model doesn’t allow therapies to take advantage of the first two years of life. These are crucial years for brain development, and early therapies may be more effective in reducing child disability. </p>
<p>The theory is that if therapies are started early enough, particularly when the brain is so young, it might be possible to alter the trajectory of autism, or even prevent the development of the condition in some infants.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/284208/original/file-20190716-173355-z9tlm6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/284208/original/file-20190716-173355-z9tlm6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=401&fit=crop&dpr=1 600w, https://images.theconversation.com/files/284208/original/file-20190716-173355-z9tlm6.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=401&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/284208/original/file-20190716-173355-z9tlm6.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=401&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/284208/original/file-20190716-173355-z9tlm6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/284208/original/file-20190716-173355-z9tlm6.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/284208/original/file-20190716-173355-z9tlm6.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">The early years are crucial for brain development.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/babys-playing-together-kindergarten-543939718?src=hXO_u2G46_AGdl0XqgY1Tw-1-16&studio=1wpixel.com">Santypan/Shutterstock</a></span>
</figcaption>
</figure>
<h2>Our study</h2>
<p>Our study is one of the first rigorous tests of this theory. </p>
<p>We recruited 103 infants from Perth and Melbourne, aged between 9 and 14 months, who were showing early behavioural signs of autism, such as not responding to their names, poor eye contact, and few social smiles.</p>
<p>Half the children were randomly assigned to receive an <a href="https://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(14)00091-1/fulltext">intervention</a> that helps parents understand their infant’s communication cues, and helps them respond in a way that promotes back-and-forth interactions. </p>
<p>By creating a socially rich environment around the infant that is tailored to their specific needs, we may help support the development of the neural pathways involved in language and social development.</p>
<p>The therapy is considered “low intensity” in the number of contact hours with a therapist (one hour per fortnight). This contrasts with “high intensity” therapies for older children with a diagnosis of autism, which often require at least ten contact hours per week.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/284217/original/file-20190716-173329-mwb4x.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/284217/original/file-20190716-173329-mwb4x.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/284217/original/file-20190716-173329-mwb4x.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/284217/original/file-20190716-173329-mwb4x.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/284217/original/file-20190716-173329-mwb4x.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/284217/original/file-20190716-173329-mwb4x.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/284217/original/file-20190716-173329-mwb4x.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">The therapy promoted back-and-forth interactions between the infants and their parents.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/download/confirm/130240259?src=kNyzAgpRcWCu3Zxpge0Gnw-1-11&studio=1&size=huge_jpg">Pavla/Shutterstock</a></span>
</figcaption>
</figure>
<p>The other half of the group was randomly assigned to receive standard community care. This is often restricted to a parent information session, a few sessions with allied health professionals, or no intervention at all. This group served as the control group. </p>
<p>We then assessed the infants’ development either side of a six-month therapy period. </p>
<h2>What did we find?</h2>
<p>The intervention group did not show a significant reduction in early autism behaviours compared with the control group. This finding is consistent with a <a href="https://www.ncbi.nlm.nih.gov/pubmed/28861651">previous study</a> that found it’s not easy to change the symptoms of autism.</p>
<p>However, after treatment, parents in the treatment group rated their infants as having better communication skills than those in the control group. </p>
<p>In the six-month therapy period, the treatment group improved in understanding an average of 37 more words and saying an average of 15 more words compared with the control group. Most children were not saying any words at the start of the therapy period, and so these language gains reported by parents are an important improvement. </p>
<p>This finding has an important caveat: parents could not be “blinded” to the therapy. It’s therefore possible the finding reflects “rater bias”, whereby parents whose children received the intervention hoped there was a developmental improvement, and rated their infants accordingly.</p>
<h2>What does this mean for the NDIS?</h2>
<p>This study is an important milestone in our understanding of how (and whether) to provide therapy to young infants who show early signs of autism. </p>
<p>Our findings suggest that these therapies do not reduce the core autism symptoms, but may improve language skills. These gains may be especially important for reducing long-term disability and helping each child reach their full potential.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/284206/original/file-20190716-173342-oloef7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/284206/original/file-20190716-173342-oloef7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/284206/original/file-20190716-173342-oloef7.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/284206/original/file-20190716-173342-oloef7.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/284206/original/file-20190716-173342-oloef7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/284206/original/file-20190716-173342-oloef7.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/284206/original/file-20190716-173342-oloef7.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">
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<span class="caption">It’s unclear whether the difference will remain when the children are older.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/cute-little-toddler-girl-playing-home-1348098188?studio=1">Shutterstock</a></span>
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<p>The long-term test will be whether these improvements are still evident when the infants are older. </p>
<p>Few studies have found long-term developmental changes as a result of infant therapies, and we are currently in the process of reassessing the children in our study when they turn three. </p>
<p>If we find that pre-diagnostic therapy leads to longer-term developmental changes, this has important implications for health and disability services. </p>
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<strong>
Read more:
<a href="https://theconversation.com/young-children-with-autism-can-thrive-in-mainstream-childcare-104936">Young children with autism can thrive in mainstream childcare</a>
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<p>People on the autism spectrum currently represent <a href="https://www.ndis.gov.au/about-us/publications/quarterly-reports">29% of all participants</a> enrolling in Australia’s National Disability Insurance Scheme (NDIS). </p>
<p>A key plank of the NDIS is the Early Childhood Early Intervention pathway, which provides resources to support intervention for children up to seven years of age. </p>
<p>The pathway is very well conceived, but there are currently long <a href="https://www.ndis.gov.au/about-us/publications/quarterly-reports">wait lists</a>. </p>
<p>The federal government recently <a href="https://ministers.dss.gov.au/media-releases/4981">announced</a> a plan to resolve these delays, which indicates a recognition of the importance of early intervention for children with a confirmed diagnosis in reducing long-term disability in these children. </p>
<p>The follow-up of the children in the current study to three years of age will provide a litmus test as to whether very early intervention for infants should be an even higher priority.</p><img src="https://counter.theconversation.com/content/120331/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Andrew Whitehouse receives funding from the National Health and Medical Research Council, the Australian Research Council, Autism CRC, and the Angela Wright Bennett Foundation. </span></em></p><p class="fine-print"><em><span>Kristelle Hudry receives funding from the Autism CRC, Department of Social Services, and La Trobe University Research Focus Areas (Understanding Disease and Building Healthy Communities). </span></em></p><p class="fine-print"><em><span>Kandice Varcin 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>Children with autism don’t usually begin therapy until they’re given a diagnosis, which rarely occurs before the age of two. But new research shows there’s benefit to starting early.Andrew Whitehouse, Bennett Chair of Autism, Telethon Kids Institute, Univeristy of Western Australia, The University of Western AustraliaKandice Varcin, Postdoctoral Fellow in the Autism Research Team, Telethon Kids InstituteKristelle Hudry, Senior Lecturer in Developmental Psychology, La Trobe UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1066112018-11-15T07:35:20Z2018-11-15T07:35:20ZWhy early diagnosis of autism should lead to early intervention<figure><img src="https://images.theconversation.com/files/245183/original/file-20181113-194506-1ssbmid.jpg?ixlib=rb-1.1.0&rect=169%2C280%2C4750%2C2995&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Early intervention can help children with autism to develop their communication skills.</span> <span class="attribution"><span class="source">from www.shutterstock.com</span>, <a class="license" href="http://creativecommons.org/licenses/by-nd/4.0/">CC BY-ND</a></span></figcaption></figure><p>Research suggests children can be reliably <a href="https://www.ncbi.nlm.nih.gov/pubmed/22735682">diagnosed with autism</a> before the age of two. It also shows that many of the behavioural symptoms of autism are present before the age of one. </p>
<p>These behaviours include decreased interest in social interaction, delayed development of speech and intentional communication, a lack of age-appropriate sound development, and unusual visual fixations. </p>
<p>Preliminary results of a <a href="https://www.victoria.ac.nz/news/2018/09/new-play-based-therapy-effective-for-new-zealand-children-with-autism">study in the Wellington region</a> indicate most children are diagnosed when they are around three years old. However, there is arguably little point of providing early diagnosis if it does not lead to evidence-based early intervention.</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/new-autism-guidelines-aim-to-improve-diagnostics-and-access-to-services-104929">New autism guidelines aim to improve diagnostics and access to services</a>
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<h2>Early start</h2>
<p>The <a href="https://www.esdm.co/">Early Start Denver Model</a> (ESDM) is a promising therapy for very young children (between one and five years) with, or at risk for, autism. ESDM uses play and games to build positive relationships in which the children are encouraged to boost language, social and cognitive skills. </p>
<p>Where ESDM differs most from traditional intervention is that behavioural teaching techniques are embedded within this play. This includes providing clear cues for a behaviour, and rewarding that behaviour. Parents, therapists and teachers can use ESDM techniques within the children’s play and daily routines to help them reach developmentally appropriate milestones. </p>
<p>For example, a child who does not yet talk, may be learning to reach for preferred items. A child who has a lot of language may be learning to answer questions like “what is your name?”. </p>
<p>Initial research conducted in the United States, where the model was developed, suggests that <a href="https://www.ncbi.nlm.nih.gov/pubmed/19948568">ESDM is particularly effective</a> when implemented for more than 15 hours a week by trained therapists in the home environment.</p>
<h2>Improved cognition in early childhood</h2>
<p>The model was adopted in Australia where the government funds <a href="https://www.dss.gov.au/disability-and-carers/programs-services/for-people-with-disability/autism-specific-early-learning-and-care-centres">autism specific early childhood centres</a>. Research conducted in these centres indicates that children receiving ESDM intervention from trained therapists show <a href="https://www.ncbi.nlm.nih.gov/pubmed/24974255">greater improvements</a> in understanding and cognitive skills than children who were not receiving treatment.</p>
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<p>
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<strong>
Read more:
<a href="https://theconversation.com/new-autism-guidelines-aim-to-improve-diagnostics-and-access-to-services-104929">New autism guidelines aim to improve diagnostics and access to services</a>
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<p>In New Zealand there is no government funding for such therapy. As a result, the cost of providing this intensive level of early intervention is beyond the budget of most families. There is also a lack of trained professionals with the technical expertise to implement such therapies. </p>
<p>For these reasons, we are working with the <a href="http://www.autisminterventiontrust.org.nz/">Autism Intervention Trust</a> and <a href="https://www.autismnz.org.nz/">Autism New Zealand</a> to develop a New Zealand-specific low-intensity approach to delivering ESDM. The team is using the research of what is effective overseas and is applying it within a New Zealand context. </p>
<h2>Mainstream schooling</h2>
<p>New Zealand takes an <a href="https://www.education.govt.nz/school/running-a-school/inclusive-education/">inclusive approach to education</a>. The main goal of the research programme therefore is for children with autism and their families to receive support earlier so that they can get a better start in their development and go on to mainstream schools.</p>
<p>One project involves training kindergarten teachers in ESDM. Inclusion of ESDM strategies in kindergartens is the biggest unknown because there is little teacher training in New Zealand around how to best support children with autism in mainstream settings. </p>
<p>A second project involves providing parent coaching and then adding on a small amount of one-on-one therapy. This will provide some preliminary evidence as to whether adding a minimal amount of one-on-one therapy is any more beneficial that just coaching parents.</p>
<p>Each project involves examining specific measures of communication, imitation (a key early learning skill children with autism typically struggle with) and social engagement with others. </p>
<p>Other countries with little government funding and support for children with autism and their families have taken a similar approach to providing ESDM therapy at a lower intensity. The <a href="https://www.ncbi.nlm.nih.gov/pubmed/29110508">research suggests</a> that just a few hours of therapy can lead to positive outcomes.</p><img src="https://counter.theconversation.com/content/106611/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>This project receives funding from the IHC Foundation, and the Autism Intervention Trust.</span></em></p><p class="fine-print"><em><span>This project receives funding from the IHC Foundation and Autism Intervention Trust. </span></em></p>Unlike Australia, New Zealand doesn’t fund early intervention therapy for autistic children, but there are programmes pre-school teachers and parents can use to help kids develop.Hannah Waddington, Lecturer in Educational Psychology, Te Herenga Waka — Victoria University of WellingtonJessica Tupou, PhD candidate, Te Herenga Waka — Victoria University of WellingtonLarah van der Meer, Senior Lecturer, Te Herenga Waka — Victoria University of WellingtonLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1032402018-10-10T23:03:20Z2018-10-10T23:03:20ZThe truth about fetal alcohol spectrum disorder<figure><img src="https://images.theconversation.com/files/240845/original/file-20181016-165924-1vl9cxd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Approximately 11 per cent of Canadian mothers report consuming alcohol during pregnancy, which can cause fetal alcohol spectrum disorder (FASD) in their children. </span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>Fetal alcohol spectrum disorder (FASD) is often overlooked and understudied. Caused by prenatal alcohol exposure, it is sometimes referred to as an “invisible disorder.” </p>
<p>But FASD is the <a href="https://www.ncbi.nlm.nih.gov/pubmed/27892236">most common preventable cause of developmental disability</a>. Many who have it experience <a href="https://doi.org/10.1503/cmaj.141593">lifelong behavioural, intellectual, neurological and mental health difficulties.</a></p>
<p>Individuals with FASD and their families also face <a href="https://doi.org/10.1093/phe/phv012">persistent stigma, negative stereotypes and harmful biases,</a> due to public misunderstandings. </p>
<p>Negative public attitudes are detrimental to people living with FASD, impacting their self-esteem and beliefs in their own capabilities. Research shows that <a href="https://www.canada.ca/en/public-health/services/diseases/fetal-alcohol-spectrum-disorder/support.html">with the right supports</a>, individuals with FASD can live <a href="https://www.ncbi.nlm.nih.gov/pubmed/22042791">productive and successful lives</a>. However a common, and often inaccurate, misconception is that these individuals are destined to be lifelong “burdens” on health and social systems. </p>
<p>As FASD researchers, we want to dispel common misunderstandings about children and youth with FASD, and offer some evidence-based truths.</p>
<h2>More common than autism</h2>
<p>FASD is alarmingly common, with an <a href="https://canfasd.ca/wp-content/uploads/sites/35/2018/08/Prevalence-1-Issue-Paper-FINAL.pdf">estimated four per cent of Canadians</a> having the disorder, far <a href="https://www.ncbi.nlm.nih.gov/pubmed/9451756">more than previously thought</a>. Affecting approximately 1.5 million Canadians, this means it <a href="https://canfasd.ca/wp-content/uploads/sites/35/2018/08/Prevalence-1-Issue-Paper-FINAL.pdf">is 2.5 times more prevalent than autism spectrum disorder</a>.</p>
<p>FASD affects children and youth across all races, ethnicities, cultures and socioeconomic status. In Canada, women of all ages and backgrounds consume alcohol. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/240136/original/file-20181010-133328-u04dit.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/240136/original/file-20181010-133328-u04dit.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/240136/original/file-20181010-133328-u04dit.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/240136/original/file-20181010-133328-u04dit.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/240136/original/file-20181010-133328-u04dit.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/240136/original/file-20181010-133328-u04dit.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/240136/original/file-20181010-133328-u04dit.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">
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<span class="caption">It is not necessarily possible to tell by looking at children whether they do or do not have FASD.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
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<p>Despite <a href="http://www.fasdontario.ca/cms/service-areas/prevention/effective-strategies-to-prevent-alcohol-use-in-pregnancy/">recent prevention efforts</a>, approximately <a href="http://bccewh.bc.ca/wp-content/uploads/2014/06/FASD-BIG-Infographics-Combined.-June.-2014.websized1.pdf">11 per cent of Canadians mothers</a> report consuming alcohol during pregnancy, with more than three per cent reporting alcohol binges during pregnancy. This is probably an underrepresentation, as some mothers deny drinking during pregnancy due to negative stigma.</p>
<p>You also can’t necessarily tell that someone has FASD by how they look. Less than <a href="https://doi.org/10.1002/9783527632510.ch7">10 per cent of individuals with FASD have the associated facial features</a> — short palpebral fissures, smooth philtrum and thin upper lip. </p>
<p>For most individuals living with FASD, the invisibility of the disorder is problematic because it acts as a barrier to early identification and treatment, both of which <a href="https://doi.org/10.1002/ddrr.68">are important for long-term outcomes</a>.</p>
<h2>Vulnerable to depression and abuse</h2>
<p>Many children and youth with FASD also experience secondary conditions. Mental health disorders are seen <a href="https://doi.org/10.3109/09638237.2011.577113">in over 90 per cent of individuals with FASD</a>, compared to 20 per cent of the general population. Depression and anxiety are among the most common. One study showed that depression <a href="https://www.ncbi.nlm.nih.gov/pubmed/9546004">affected 45-50 per cent</a> of a small group of individuals with FASD; another study showed anxiety to impact <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3410752/">20-40 per cent</a>.</p>
<p>Prenatal alcohol exposure does not cause all of the secondary issues seen in FASD. This is because prenatal alcohol exposure <a href="https://www.ncbi.nlm.nih.gov/pubmed/20335648">rarely occurs in isolation</a>. Children with FASD frequently experience other adverse childhood events, such as maltreatment, neglect or trauma. </p>
<p>In one study, 34 per cent of individuals exposed to alcohol prenatally were physically abused, and 24 per cent were sexually abused. </p>
<p>It is often difficult to disentangle what child outcomes are related to alcohol exposure and what result from other adverse experiences.</p>
<h2>Verbal, artistic and friendly</h2>
<p>Intelligence and thinking abilities vary in children and youth with FASD, due to variability in the types and frequency of their mothers’ drinking during pregnancy, as well as genetics and environmental factors. </p>
<p><a href="https://doi.org/10.1097/01.alc.0000175040.91007.d0">Executive functioning difficulties</a>, memory problems, language delays, visuospatial difficulties, attention problems and reduced IQ are <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3104937/">common in this population</a>. However, FASD differentially affects every individual, resulting in <a href="https://doi.org/10.1080/09297049.2017.1302579">unique areas of strengths and difficulties</a>. </p>
<p>While <a href="http://www.intellectualdisability.info/diagnosis/articles/fetal-alcohol-spectrum-disorder">many children and youth with FASD have average IQs</a>, these areas of strength may be overlooked or overshadowed by behavioural problems.</p>
<p>All kids have strengths, and <a href="https://fncaringsociety.com/sites/default/files/FPCFR%20journal%208(1)%202013_1.pdf">children with FASD are no exception</a>. Many are highly verbal, artistic, outgoing and friendly.</p>
<p>FASD does not disappear over time. It is a lifelong, pervasive disorder that requires a lifetime of supports. Issues associated with FASD may actually worsen over time. Research shows that individuals with FASD <a href="https://www.springer.com/gp/book/9783319717548">may be at risk for substance use issues</a> and other co-occurring <a href="https://doi.org/10.3109/09638237.2011.577113">mental health disorders</a> well into adulthood.</p>
<h2>We must ditch our stereotypes</h2>
<p>Despite this, <a href="https://www.cdc.gov/ncbddd/fasd/treatments.html">early diagnosis and intervention</a> may reduce some of the challenges faced by kids with FASD. While there is no cure, some interventions have shown effectiveness in improving common difficulties. </p>
<p>For example, <a href="https://www.ncbi.nlm.nih.gov/pubmed/26578111">recent research that has focused on improving self-regulation and attentional control</a> in children with FASD show improvements in lots of areas. This is evident through parent and caregiver reports, neuropsychological testing and magnetic resonance imaging (MRI) scans.</p>
<p>To best meet the needs of children and youth with FASD, it is essential to try to understand the whole child in their context, all their experiences and their individual strengths and differences.</p>
<p>To maximize the best outcomes for these children, we also need to be aware of our own biases and stereotypes. These can be harmful to the very children and families who need our support the most.</p><img src="https://counter.theconversation.com/content/103240/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Carly McMorris receives funding from the Mental Health and Addiction Strategic Clinical Network Grant, through Alberta Health Services. </span></em></p><p class="fine-print"><em><span>Catherine Lebel receives funding from the Mental Health and Addiction Strategic Clinical Network Grant, through Alberta Health Services. </span></em></p><p class="fine-print"><em><span>Chantel Ritter 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>With an estimated prevalence of four per cent, fetal alcohol syndrome disorder (FASD) is more common than autism. And yet is it surrounded by myth and stigma.Carly McMorris, Assistant Professor of Education, University of CalgaryCatherine Lebel, Assistant Professor of Radiology, University of CalgaryChantel Ritter, MSc student in School and Applied Child Psychology, University of CalgaryLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/852432017-11-08T23:43:57Z2017-11-08T23:43:57ZDesign lab connects autism families with research<figure><img src="https://images.theconversation.com/files/192496/original/file-20171030-18686-1ntcb3d.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Approximately 87,000 children in Canada are affected by autism. A new web platform promises to help their families access much-needed research knowledge. </span> <span class="attribution"><span class="license">Author provided</span></span></figcaption></figure><p>Sitting in a circle, a group of researchers and caregivers of people with autism spectrum disorder weave blue and orange yarn around a circular peg board. One parent describes the challenges she faces in finding the right research and resources to support her child.</p>
<p>“I need respite care, in order to have time to do research into respite care,” she says.</p>
<p>Another parent chimes in: “Depending on where your child is on the spectrum, you might just be grasping at anything you can get.” And another adds: “If you’re stressed out and someone says (people with autism) should stop eating cheese, I’m going to stop my child from eating cheese.”</p>
<p>Autism spectrum disorder (ASD) is the most common neurological disorder in children and it is impacting our society in profound ways. In Canada, more than 515,000 people are affected and approximately 87,000 of these are school age. ASD now affects one in 68 births. And, given <a href="http://pacificautismfamily.com/about-asd/">this prevalence rate</a>, it is estimated that there are 60,000 people affected by ASD in British Columbia alone.</p>
<p>For parents with children on the spectrum, finding credible research among the vast amount of information available can be challenging. In B.C., once a diagnosis is confirmed, families accessing autism funding must learn to navigate a complex system of therapies and supports. They are often left to their own devices to make immediate and critical decisions about where invest their money, knowing that each delay could <a href="http://pacificautismfamily.com/wp-content/uploads/2014/04/PAFC-Case-for-Support.pdf">cost their child the potential benefits of early intervention</a>. </p>
<p>These families urgently need better access to knowledge — on best practices, the latest research and evidence-based treatments and support.</p>
<p>To address this need, we at the <a href="http://www.healthdesignlab.ca/">Health Design Lab</a> at Emily Carr University have been collaborating with the <a href="http://pacificautismfamily.com/">Pacific Autism Family Network (PAFN)</a> since 2015 to <a href="http://informeveryautism.com/research/">gain a better understanding of the communication challenges and research needs of families</a> in the ASD community in B.C.</p>
<h2>An interactive vision wall</h2>
<p>The Health Design Lab is a research and design centre that works with industry and community partners to improve health products, services and systems — through a “human-centred design” approach. </p>
<p>We work with organizations and communities to ensure that the thing being designed (for example a system, object, communication, space or service) meets the needs of the people who will be using it. We view these users as experts of their own experiences and believe it is crucial to involve them in the design process.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/192520/original/file-20171030-18683-1cyhtpc.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/192520/original/file-20171030-18683-1cyhtpc.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/192520/original/file-20171030-18683-1cyhtpc.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/192520/original/file-20171030-18683-1cyhtpc.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/192520/original/file-20171030-18683-1cyhtpc.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=565&fit=crop&dpr=1 754w, https://images.theconversation.com/files/192520/original/file-20171030-18683-1cyhtpc.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=565&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/192520/original/file-20171030-18683-1cyhtpc.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=565&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption"></span>
<span class="attribution"><span class="license">Author provided</span></span>
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<p>Our work with the Pacific Autism Family Network to understand family and researcher needs within the ASD community in B.C. has included creating an interactive installation at the grand opening of the Goodlife Fitness Family Autism Hub. We asked visitors to contribute to a <em>vision wall</em> and a <em>live bar graph</em>, highlighting where families currently access research.</p>
<h2>Mapping the system with string</h2>
<p>Most recently, in January 2017, HDL facilitated a series of four “co-creation workshops” with researchers and families to understand how these groups are communicating and to generate ideas to improve access to research. </p>
<p>We had 26 caregivers and family members of individuals on the spectrum, and 20 researchers and service providers participating in these workshops. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/192522/original/file-20171030-18686-zkbtyj.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/192522/original/file-20171030-18686-zkbtyj.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=442&fit=crop&dpr=1 600w, https://images.theconversation.com/files/192522/original/file-20171030-18686-zkbtyj.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=442&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/192522/original/file-20171030-18686-zkbtyj.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=442&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/192522/original/file-20171030-18686-zkbtyj.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=555&fit=crop&dpr=1 754w, https://images.theconversation.com/files/192522/original/file-20171030-18686-zkbtyj.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=555&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/192522/original/file-20171030-18686-zkbtyj.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=555&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"><span class="license">Author provided</span></span>
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</figure>
<p>The first half of each workshop aimed to understand the current state of communication between researchers and family members. We used a string mapping activity, in which researchers used blue string to indicate where they typically disseminate information, and families used orange string to indicate where they typically search for research and information. This highlighted gaps in the access and exchange of research. </p>
<p>We designed objects and hands-on activities to trigger conversation, foster dialogue and draw out latent and tacit knowledge from participants. The second half of the workshop used an interview format and group discussion to generate ideas for improving communication and knowledge exchange in the future.</p>
<p>“Co-creation” is a strategy that has been used in other health-care and social projects to <a href="http://www.tandfonline.com/doi/full/10.1080/15710880701875068?scroll=top&needAccess=true%20and%20http://www.amj.net.au/index.php/AMJ/article/viewFile/378/649">improve communication between stakeholders</a> by creating a level playing field in which all participants can express themselves in meaningful ways. We felt that co-creation activities would be useful in this context, too, to break down barriers between researchers and families and acknowledge both groups as knowledge holders.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/192521/original/file-20171030-18700-11mvlro.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/192521/original/file-20171030-18700-11mvlro.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/192521/original/file-20171030-18700-11mvlro.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/192521/original/file-20171030-18700-11mvlro.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/192521/original/file-20171030-18700-11mvlro.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/192521/original/file-20171030-18700-11mvlro.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/192521/original/file-20171030-18700-11mvlro.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"></span>
<span class="attribution"><span class="license">Author provided</span></span>
</figcaption>
</figure>
<p>“I found the format of the workshop was incredibly useful. It allowed for the participants to talk freely as well as create a visual representation of how people have different experiences navigating the system,” said one participant. </p>
<h2>Videos, newsletters and storytelling</h2>
<p>In these workshops we learned that time, money, location, language and format are all barriers for families trying to access reliable and credible research. </p>
<p>To improve knowledge exchange, family and researcher suggestions included using: Knowledge brokers, a physical and online platform, video conferencing, mentorship opportunities and the delivery of research results through videos, newsletters and storytelling. </p>
<p>Overall, there was a clear desire for a web platform to curate credible ASD research for families and disseminate it through more diversified and accessible communication modes. With funding through PAFN, Emily Carr University and the Michael Smith Foundation for Health Research, we are now moving into the next phase of collaborative design of this web platform. </p>
<hr>
<p><em>Many faculty and students at Emily Carr University have contributed to this work over the past three years. We would like to acknowledge the contributions of: Jonathan Aitken (past HDL director), Caylee Raber (current HDL director), Deborah Shackleton (dean of design and dynamic media), and the following research assistants — Stacie Schatz, Ateret Buchman, Natalia Franca, Zora Trocme, Amanda Roy, Dina Smallman, Juliana Forero, Lauren Low and Rachelle Lortie.</em></p><img src="https://counter.theconversation.com/content/85243/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Caylee Raber works for Emily Carr University of Art + Design. </span></em></p>Families supporting children with autism urgently need better access to the latest research about evidence-based treatments. A new health design project from Emily Carr University is helping.Caylee Raber, Director of Health Design Lab, Emily Carr UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/837122017-09-11T05:42:21Z2017-09-11T05:42:21ZNew autism diagnosis guidelines miss the mark on how best to help children with developmental problems<figure><img src="https://images.theconversation.com/files/185416/original/file-20170911-19215-1pbeotn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Autism has become a default consideration for any child who struggles socially, behaviourally, or with sensory stimuli.</span> <span class="attribution"><span class="source">from shutterstock.com</span></span></figcaption></figure><p>The first <a href="https://www.autismcrc.com.au/sites/default/files/inline-files/Australian%20National%20Guideline%20for%20ASD%20Assessment%20-%20Draft%20Version%20for%20Community%20Consultation_0.pdf">national guidelines</a> for diagnosing autism were released for public consultation last week. The report by research group <a href="https://www.autismcrc.com.au/get-involved/participate-study/national-guideline-now-open-community-consultation">Autism CRC</a> was commissioned and funded by the National Disability Insurance Scheme (<a href="https://www.ndis.gov.au/news/australias-First-National-Guideline-for-Autism--Diagnosis.html">NDIS</a>) in October 2016. </p>
<p>The NDIS has taken over the running of federal government <a href="https://www.dss.gov.au/our-responsibilities/disability-and-carers/program-services/for-people-with-disability/early-intervention-services-for-children-with-disability">early intervention programs</a> that provide specialist services for families and children with disabilities. In doing so, they have inherited the problem of <a href="http://www.a4.org.au/sites/default/files/Autism%20CRC%20Report%20-%20Diagnostic%20Standards%20for%20Autism%20(1).pdf">diagnostic variability</a>. Biological diagnoses are definable. The genetic condition <a href="https://fragilex.org.au/what-is-fragile-x/">fragile X xyndrome</a>, for instance, which causes intellectual disability and development problems, can be diagnosed using a blood test. </p>
<p>Autism diagnosis, by contrast, is imprecise. It’s based on a child’s behaviour and function at a point in time, benchmarked against age expectations and comprising multiple simultaneous components. Complexity and imprecision arise at each stage, implicit to the condition as well as the process. So, it makes sense the NDIS requested an objective approach to autism diagnosis.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/the-difficulties-doctors-face-in-diagnosing-autism-53731">The difficulties doctors face in diagnosing autism</a>
</strong>
</em>
</p>
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<p>The presumption of the Autism CRC report is that standardising the method of diagnosis will address this problem of diagnostic uncertainty. But rather than striving to secure diagnostic precision in the complexity and imprecision of the real world, a more salient question is how best to help children when diagnostic uncertainty is unavoidable. </p>
<h2>What’s in the report?</h2>
<p>The report recommends a two-tiered diagnostic strategy. The first tier is used when a child’s development and behaviour clearly meet the diagnostic criteria. </p>
<p>The process proposed does not differ markedly from current recommended practice, with one important exception. Currently, the only professionals who can “sign off” on a diagnosis of autism are certain medical specialists such as paediatricians, child and adolescent psychiatrists, and neurologists. The range of accepted diagnosticians has now been expanded to include allied health professionals such as psychologists, speech pathologists and occupational therapists.</p>
<p>This exposes the program to several risks. Rates of diagnosed children may further increase with greater numbers of diagnosticians. Conflict of interest may occur if diagnosticians potentially receive later benefit as providers of funded treatment interventions. And while psychologists and other therapists may have expertise in autism, they may not necessarily recognise the important conditions that can present similarly to it, as well as other problems the child may have alongside autism.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/185431/original/file-20170911-28525-1caehw2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/185431/original/file-20170911-28525-1caehw2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/185431/original/file-20170911-28525-1caehw2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/185431/original/file-20170911-28525-1caehw2.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/185431/original/file-20170911-28525-1caehw2.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/185431/original/file-20170911-28525-1caehw2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/185431/original/file-20170911-28525-1caehw2.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/185431/original/file-20170911-28525-1caehw2.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">The new autism diagnosis guidelines expand the types of health professionals who can ‘sign off’ on a diagnosis.</span>
<span class="attribution"><span class="source">from shutterstock.com</span></span>
</figcaption>
</figure>
<p>The second recommended tier of diagnosis is for complex situations, when it is not clear a child meets one or more diagnostic criteria. In this case, the report recommends assessment and agreement by a set of professionals – known as a multidisciplinary assessment. This poses important challenges:</p>
<ul>
<li><p>Early intervention starts early. Multidisciplinary often means late, with <a href="https://www.google.com.au/url?sa=t&rct=j&q=&esrc=s&source=web&cd=7&ved=0ahUKEwjL6IXIlpzWAhXDGJQKHbMICGEQFghHMAY&url=http%3A%2F%2Fwww.a4.org.au%2Fsites%2Fdefault%2Ffiles%2FAutism%2520CRC%2520Report%2520-%2520Diagnostic%2520Standards%2520for%2520Autism%2520(1).pdf&usg=AFQjCNHT5tfZcaZLV3wgBYxRpDy0xaxhZw">delays on waiting lists</a> for limited services. This is likely to worsen if more children require this type of assessment.</p></li>
<li><p>Multidisciplinary assessments are expensive. If health systems pay, capacity to subsequently help children in the health sector will be correspondingly reduced.</p></li>
<li><p>Groups of private providers may set up diagnostic one-stop shops. This may inadvertently discriminate against those who can’t pay and potentially bias towards diagnosis for those who can.</p></li>
<li><p>Multidisciplinary assessments discriminate against those in regional and rural areas, where professionals are not readily available. Telehealth (consultation over the phone or computer) is a poor substitute for direct observation and interaction. Those in rural and regional areas are already disadvantaged by limited access to intervention services, so diagnostic delays present an additional obstacle.</p></li>
</ul>
<p>A diagnostic approach reflects a deeper, more fundamental problem. Methodological rigour is necessary for academic research validity, with the assumption autism has distinct and definable boundaries. </p>
<p>But consider two children almost identical in need. One just gets over the diagnostic threshold, the other not. This may be acceptable for academic studies, but it’s not acceptable in community practice. An arbitrary diagnostic boundary does not address complexities of need.</p>
<h2>We’re asking the wrong question</h2>
<p>The federal government’s first initiative to fund early intervention services for children diagnosed with autism was introduced in 2008. The <a href="http://raisingchildren.net.au/articles/hcwa_funding_partner.html">Helping Children With Autism</a> program provided A$12,000 for each diagnosed child, along with limited services through Medicare. </p>
<p>The <a href="http://www.betterstart.net.au/what-is-better-start/">Better Start</a> program was introduced later in 2011. Under Better Start, intervention programs also became available for children diagnosed with cerebral palsy, Down syndrome, fragile X syndrome and hearing and vision impairments.</p>
<p>While this broadened the range of disabilities to be funded, it did not address the core problem of <a href="https://www.ncbi.nlm.nih.gov/pubmed/22250827">discrimination by diagnosis</a>. This is where children who have equal needs but who for various reasons aren’t officially diagnosed are excluded from support services. Something is better than nothing, however, and these programs have helped about <a href="https://www.dss.gov.au/our-responsibilities/disability-and-carers/program-services/for-people-with-disability/early-intervention-services-for-children-with-disability">60,000</a> children at a cost of over A$400 million. </p>
<p>Yet the NDIS now also faces a philosophical challenge. The <a href="https://www.ndis.gov.au/about-us/what-ndis">NDIS</a> considers funding based on a person’s ability to function and participate in life and society, <a href="https://www.ndis.gov.au/news/australias-First-National-Guideline-for-Autism--Diagnosis.html">regardless of diagnosis</a>. By contrast, entry to both these early intervention programs is determined by diagnosis, irrespective of functional limitation.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/understanding-the-ndis-will-parents-of-newly-diagnosed-children-with-disability-be-left-in-the-dark-60795">Understanding the NDIS: will parents of newly diagnosed children with disability be left in the dark?</a>
</strong>
</em>
</p>
<hr>
<p>While funding incentives cannot change prevalence of fragile X syndrome in our community (because of its biological certainty), rates of autism diagnoses have <a href="http://a4.org.au/node/1340">more than doubled</a> since the <a href="http://raisingchildren.net.au/articles/hcwa_funding_partner.html">Helping Children with Autism</a> program began in 2008. Autism has become a default consideration for any child who struggles socially, behaviourally, or with sensory stimuli.</p>
<p>Clinicians have developed alternative ways of thinking about this “grey zone” problem. One strategy is to provide support in proportion to functional need, in line with the NDIS philosophy. </p>
<p>Another strategy is to undertake response-to-intervention. This is <a href="https://www.understood.org/en/school-learning/special-services/rti/understanding-response-to-intervention">well developed in education</a>, where support is provided early and uncertainty is accepted. By observing a child’s pattern and rate of response over time, more information emerges about the nature of the child’s ongoing needs. </p>
<p>The proposed assessment strategy in the Autism CRC report addresses the question, “does this child meet criteria for autism?”. This is not the same as “what is going on for this child, and how do we best help them?”. And those are arguably the more important questions for our children.</p>
<hr>
<p><em>This article was co-authored by Dr Jane Lesslie, a specialist developmental paediatrician. Until recently she was vice president of the <a href="https://nbpsa.org/">Neurodevelopmental and Behavioural Paediatric Society of Australasia</a>.</em></p><img src="https://counter.theconversation.com/content/83712/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Michael McDowell has received funding from the NHMRC, and several pharmaceutical companies for research and speaking engagements. He was the Foundation President of the NBPSA, the Australasian professional society for Developmental Paediatricians, and remains affiliated with this organisation.</span></em></p>There are several problems with the recently released guidelines for diagnosing autism. But the fundamental issue is that we’re striving for diagnosis first, and help later.Michael McDowell, Associate Professor, The University of QueenslandLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/607952016-07-06T20:06:09Z2016-07-06T20:06:09ZUnderstanding the NDIS: will parents of newly diagnosed children with disability be left in the dark?<figure><img src="https://images.theconversation.com/files/126488/original/image-20160614-18068-kgslfz.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The NDIS poses many more challenges to parents with children newly diagnosed with developmental delay.</span> <span class="attribution"><span class="source">from shutterstock.com</span></span></figcaption></figure><p><em>On July 1 2016, the National Disability Insurance Scheme (NDIS) moved from a trial phase to a full national roll-out. In this series on <a href="https://theconversation.com/au/topics/understanding-the-ndis">Understanding the NDIS</a>, we explore how the scheme works, why Australia needs it, and the issues to be addressed before eligible Australians, such as many Indigenous people with disability, can receive the benefits they are entitled to.</em></p>
<hr>
<p>The National Disability Insurance Scheme (NDIS) emphasises a commitment to social justice that values a person’s right to choose and purchase the service they want to support their everyday living.</p>
<p>In the case of infants and young children diagnosed with a disability, the scheme <a href="https://myplace.ndis.gov.au/ndisstorefront/document/factsheet-supports-ndis-will-fund-i.html">will provide funding</a> for early intervention, therapy and respite services, as required and chosen by their parents.</p>
<p>For new parents with young children diagnosed with developmentally challenging conditions – such as hearing loss, cerebral palsy or autism spectrum disorder – coming to terms with the diagnosis is part of their adjustment journey.</p>
<p>It is broadly accepted that <a href="http://www.tandfonline.com/doi/abs/10.1080/10522150802713322#.V2eElkIqv8s">providing family-centred services</a> to parents as soon as possible after diagnosis <a href="http://onlinelibrary.wiley.com/doi/10.1111/j.1468-3148.2005.00270.x/abstract">benefits</a> the child’s developmental progress and their <a href="http://psycnet.apa.org/psycinfo/2008-14489-001">family’s adjustment</a> to changes in their circumstances.</p>
<p>The NDIS is a move to a direct payment scheme and reflects a different model of funding arrangements. So what will becoming a purse-holder, with the added pressure of having to choose your own options, mean for families with a newly diagnosed child with a disability? </p>
<h2>Early intervention</h2>
<p>In Australia, specialist services and early years programs for families and children with disabilities are known as early intervention and are typically free of fees. These programs, organised through not-for-profit (NFP) agencies, provide families with a professional contact to help with information and understanding after receiving a diagnosis for their child.</p>
<p>Many of the NFP agencies have grown from humble beginnings, such as from faith-based or community sponsorship, and become established in local disability networks. </p>
<p>Funds from state governments, known as block funding, have assisted the NFP sector to grow and develop into responsive local groups, skilled at working with families. </p>
<p>As a result, health and education stakeholders acknowledge early intervention practice as playing a vital role in helping children diagnosed with disabilities <a href="http://www.education.vic.gov.au/Documents/childhood/providers/needs/ecislitreviewexecsum.pdf">integrate into early years education</a>.</p>
<p>For parents, the process of enrolling in an early intervention service gives them opportunities to visit agencies and see their programs. They can then reach decisions according to their perceptions of their child’s difficulties. </p>
<p>Research reveals that developing a relationship with parents as a <a href="http://www.tandfonline.com/doi/full/10.1080/10349120701488772">partnership</a> is fundamental to quality early intervention practice. When services are delivered in a <a href="http://tec.sagepub.com/content/31/4/216.abstract">family-centred way</a>, this assists parents to make their own choices at their own pace.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/126847/original/image-20160616-19956-i210b4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/126847/original/image-20160616-19956-i210b4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=390&fit=crop&dpr=1 600w, https://images.theconversation.com/files/126847/original/image-20160616-19956-i210b4.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=390&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/126847/original/image-20160616-19956-i210b4.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=390&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/126847/original/image-20160616-19956-i210b4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=490&fit=crop&dpr=1 754w, https://images.theconversation.com/files/126847/original/image-20160616-19956-i210b4.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=490&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/126847/original/image-20160616-19956-i210b4.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=490&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Services and early years programs for families and children with disabilities are known as early intervention.</span>
<span class="attribution"><span class="source">from shutterstock.com</span></span>
</figcaption>
</figure>
<p>Under the NDIS, the type of informal support that comes from a parent’s initial engagement with an agency offering such programs, to talk and find out what early intervention is and how it can help, will not be a funded service. In fact, it will no longer exist. </p>
<p>This in turn will make it difficult for parents to know whether or not they need to apply for disability funding.</p>
<h2>NDIS eligibility</h2>
<p>Parents will need to establish their eligibility for the NDIS before they can receive professional support from any early intervention services. </p>
<p>In referring to the <a href="https://myplace.ndis.gov.au/ndisstorefront/index.html">NDIS literature</a> and websites to establish the terms of their accessibility, parents will discover little of the fine-grained information about what it might mean to be a new parent of a child diagnosed with a disability. </p>
<p>For instance, there are few images on the early years documentation showing babies or young children which might assist parents to relate to their situation.</p>
<p>As much as early information is available to families from clinical sources, the language is medical and reflects risk and delay, rather than the practicalities of parenting a child with particular needs.</p>
<p>Yet, in the new scheme, only when parents draw on this type of information to establish eligibility for the NDIS will they be entitled to make a claim on behalf of their child and identify a service or program. </p>
<p>Accordingly, units of service, such as home visits or a group session, attract a standard fee to be costed in advance into a funding package. With this package, parents can approach an agency offering an early intervention program to provide the services listed in their package. </p>
<p>Parents must choose before they know or understand what early intervention is.</p>
<p>So those important first conversations about what it means to parent a child with a disability are now packaged; families are consumers, although not necessarily well-informed ones.</p>
<p>Infants and young children are increasingly surviving very low birth weights and complex health needs, which often lead to <a href="http://adc.bmj.com/content/98/12/1008">developmental difficulties</a>. These are emerging categories, with attendant emerging implications in terms of early identification and support needs.</p>
<p>The NDIS brings an expectation that all parents can and will be able to understand and articulate, with sufficient clarity, their eligibility for services and receive the support they need. The conundrum the NDIS presents is that requiring individual choice, in many cases, will fly in the face of individual empowerment.</p>
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<p><em>You can read today’s related article on the groups of people likely to miss out on the benefits they are entitled to under the NDIS <a href="http://theconversation.com/understanding-the-ndis-many-eligible-people-with-disabilities-are-likely-to-miss-out-61016">here</a>.</em></p><img src="https://counter.theconversation.com/content/60795/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Alison M Marchbank 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>Informal early support through intervention programs helps parents understand their child’s newly diagnosed disability. But what will happen when, under the NDIS, these services no longer exist?Alison M Marchbank, Honarary Fellow; Early Childhood Education., Charles Darwin UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/135452013-05-20T20:36:31Z2013-05-20T20:36:31ZDSM’s approach overlooks effective therapies for children<figure><img src="https://images.theconversation.com/files/24088/original/g8kmzwkb-1368938819.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The last ten years have seen the rise of therapies for young people that focus on family and wider social systems.</span> <span class="attribution"><span class="source">Choo Yut Shing</span></span></figcaption></figure><p>The fifth edition of the Diagnostic and Statistical Manual for Mental Disorders (DSM-5), a classification system for mental disorders produced by the American Psychiatric Association for the past 60 years, was released on Saturday. </p>
<p>The manual has attracted criticism from across the board, from the <a href="http://www.guardian.co.uk/society/2013/may/12/psychiatrists-under-fire-mental-health?INTCMP=SRCH">British Psychological Society</a> to the chair of the previous edition’s taskforce, <a href="http://www.huffingtonpost.com/allen-frances/dsm-5_b_2227626.html">Allen Frances</a> and the <a href="http://www.nytimes.com/2013/05/07/health/psychiatrys-new-guide-falls-short-experts-say.html?nl=todaysheadlines&emc=edit_th_20130507&_r=0">director</a> of the US National Institute of Mental Health. </p>
<p>Some of these criticisms centre around claims that psychiatry more generally is moving away from psychological theories and pursuing an increasingly <a href="http://www.nimh.nih.gov/about/director/publications/psychiatry-as-a-clinical-neuroscience-discipline.shtml">neuroscientific approach</a> to mental disorders. And that this approach is crowding out the central role of therapy in mental health. </p>
<p>Some have gone as far to say that we are risking the bio-psycho-social model of mental illness in favour of a “<a href="http://www.ncbi.nlm.nih.gov/pubmed/20170043">bio-bio-bio</a>” model that relegates human despair to physiological functioning.</p>
<p>Australian researchers have also come under similar criticism in the past few years, particularly for former Australian of the year Patrick McGorry’s proposed “<a href="http://www.abc.net.au/worldtoday/content/2012/s3511017.htm">psychosis risk syndrome</a>” for adolescents. </p>
<p>While there is value in McGorry’s vision for early intervention to prevent serious mental health problems in young people, there are concerns about the dangers of mis-identification, and the effect that a mistaken diagnosis and resulting stigma might have on young people. </p>
<p>Concerns have also been raised, despite McGorry’s insistence that antipsychotics are not the first resort for young people, that we are witnessing a gradual creep towards the medicalising of children and young people in this country.</p>
<p>Australia is the third-highest user of stimulants for attention deficit hyperactivity disorder (ADHD) and there has been a significant increase in the use of <a href="http://onlinelibrary.wiley.com/doi/10.1111/j.1440-1754.2011.02200.x/abstract;jsessionid=9D4AEA442FB9BC80AACCDF585D303A20.d01t01">Risperidone</a>, traditionally an antipsychotic, for conduct or behavioural disorders.</p>
<p>These developments have significant implications for young people for a variety of reasons. </p>
<p>First, there are the potential effects of diagnosis on an adolescent or child’s developing identity. Adolescents diagnosed with a range of psychiatric disorders are more likely to experience depression and a lower sense of control over their life.</p>
<p>Adolescents who self-label refer to their illness as an organic part of themselves, <a href="http://steinhardt.nyu.edu/opus/issues/2011/spring/stigma">merging their identity</a> with that of a psychiatric disorder. This phenomenon requires more investigation but has the potential to mediate against the process of full recovery.</p>
<p>Second, there’s a risk that these developments will marginalise innovative and effective contextual treatments, especially given that medication is a quick fix compared to the demanding work of child and adolescent therapies.</p>
<p>But other, less reductive ways of understanding mental illness in young people are possible. US psychiatrist <a href="http://drdansiegel.com/">Daniel J Seigel</a>, for instance, advocates for the developing brain to be understood in the context of patterns of attachment and emphasises the critical importance of an interdisciplinary approach to understanding the cause of mental health problems.</p>
<p>For Seigel, insights from neuroscience, developmental theory, evolutionary psychology, systems theory, psychiatry, medicine, and psychotherapy are all needed if you are to truly understand the life of the child. </p>
<p>The past ten years has also witnessed the rise of a range of evidence-based integrative therapies that have demonstrated remarkable effectiveness when tackling young people most most severely affected by mental illness. These treatments take the best from established models of therapy and apply them together in a way that can tackle seemingly intractable problems. </p>
<p>Each of these therapies are grounded in the field of family therapy and incorporate family and wider social systems in intervention, rather than just focusing on the illness in the individual child.</p>
<p><a href="http://www.maudsleyparents.org/whatismaudsley.html">The Maudsley model</a> is one such therapy pitting a unified parenting team against anorexia, which takes adolescents hostage. The parents are supported to “supernanny” eating behaviours at home while the sibling and other family members support the distressed and sometimes resistant adolescent.</p>
<p>This is the first model to effectively respond to the challenge of paediatric anorexia nervosa by breaking the reliance on hospitals and building parental responsibility for eating at home. </p>
<p>Multisystemic therapy is one of the few treatments to have success with juvenile offenders. It is a highly effective intensive family- and community-based treatment program that focuses on addressing all environmental systems that impact chronic and violent juvenile offenders, including their homes and families, schools and teachers, neighbourhoods and friends.</p>
<p>Multidimensional family therapy is a similar approach for substance-abusing adolescents and adolescents with co-occurring substance use and mental disorders. It has achieved similar impressive results.</p>
<p>These developments are built on high-quality research and represent the coming-of-age of innovative, contextual therapies. </p>
<p>There’s even growing evidence for community-based treatment of acute psychosis in Finland. This “<a href="http://beyondmeds.com/2010/01/04/alternative-for-psychosis/">open dialogue</a>” approach is proposed as an alternative to traditional mental health services. It mobilises the patient’s social networks, promoting agency through dialogue rather than simply relying on psychopharmacological intervention.</p>
<p>The publication of the DSM-5 represents the field of psychiatry at the crossroads. Will we allow this trend towards reductionism to continue until there’s no need for therapy or family and community-based solutions? Will be be driven by the dollar and the delusion of the quick fix? Or, can we stand up for the rights of children, adolescent and adults, and embrace the realities of a complex and difficult world?</p><img src="https://counter.theconversation.com/content/13545/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Paul Rhodes receives funding from the NHMRC </span></em></p>The fifth edition of the Diagnostic and Statistical Manual for Mental Disorders (DSM-5), a classification system for mental disorders produced by the American Psychiatric Association for the past 60 years…Paul Rhodes, Senior Lecturer in Psychology, University of SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/141732013-05-14T06:11:29Z2013-05-14T06:11:29ZRe-stigmatising the mentally ill<figure><img src="https://images.theconversation.com/files/23711/original/z2nn6vbf-1368510575.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">By suggesting that everyone who has a mental illness could possibly be violent, the articles isolate, highlight and stigmatise them.</span> <span class="attribution"><span class="source">Михал Орела/Flickr</span></span></figcaption></figure><p>Just when we thought we were heading for a more tolerant and accepting attitude toward people afflicted by mental illness, a <a href="http://www.theaustralian.com.au/news/features/out-of-the-blue/story-e6frg8h6-1226637023316">feature</a> and a news <a href="http://www.theaustralian.com.au/news/health-science/mentally-ill-more-prone-to-violence/story-e6frg8y6-1226639749231">article</a> in Saturday’s The Australian quoting leaders in the area of forensic psychiatry have revived the old mental-illness-equals-axe-murderer stigma. </p>
<p><a href="http://www.theaustralian.com.au/news/health-science/mentally-ill-more-prone-to-violence/story-e6frg8y6-1226639749231">One of the articles</a> was based on a <a href="http://onlinelibrary.wiley.com/doi/10.1111/acps.12066/abstract">recent paper</a> published in the journal <a href="http://onlinelibrary.wiley.com/journal/10.1111/(ISSN)1600-0447">Acta Psychiatrica Scandinavica</a> showing a higher rate of conviction for all violent offences by people with psychiatric disorders in Victoria. </p>
<p>The second article examined the random attack of a stranger by a person with mental illness, which <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3080680/'">research</a> has shown to be a rare event; most violence by mentally ill people is directed toward family and acquaintances. </p>
<p>Both of The Australian’s articles quoted Professor Paul Mullen and Professor James Ogloff of Monash University, who are co-authors of the Acta Psychiatrica Scandinavica study. </p>
<p>In 1984, Mullen wrote a <a href="http://informahealthcare.com/doi/abs/10.3109/00048678409161033">paper</a> that reported no increased risk of violence from people with a mental illness. And his <a href="http://anp.sagepub.com/content/31/1/3.short">1997 review</a> reported an increased risk of violent behaviour in a small proportion of patients. He is quoted as saying that new data has changed his views. </p>
<p>The newspaper articles include errors that are very damaging to the mentally ill. First, by using the umbrella term “mental illness”, they suggest that everyone with mental illness is more likely to be violent. </p>
<p>However, there is no increased risk of violence in most of the more common types of mental illness; the risk is <a href="http://www.ncbi.nlm.nih.gov/pubmed/20819987">almost entirely confined</a> to a small proportion of those patients diagnosed with schizophrenia-related psychosis.</p>
<p>By suggesting that everyone who has a mental illness could possibly be violent (just as you and I), the articles isolate, highlight and stigmatise everyone with a mental illness, from depression and anxiety to most people with psychosis.</p>
<p>Most cases of <a href="https://www.mja.com.au/journal/2007/186?page=21">more serious violence</a> by these patients have occurred because of frightening persecutory beliefs arising from active symptoms of the illness. </p>
<p>The increased risk of violence in people with conditions such as <a href="http://www.ncbi.nlm.nih.gov/pubmed/20819987">bipolar disorder</a>, on the other hand, is almost entirely due to the effects of substance abuse. And it goes without saying that violence is one of the many things people with anxiety and depression fear.</p>
<p>Rather than being perpetrators of violence, the mentally ill are far more likely to be its victim. This is mainly because of the disability and social disadvantage associated with being mentally ill, but also because these people are forced to associate with a small number of violent patients while in hospital. </p>
<p>Mental health laws in Australia detain patients in hospital after they have been deemed at risk of harm to others, rather than because they need treatment. Indeed, they do not even recognise the need for treatment. </p>
<p>This <a href="http://www.ncbi.nlm.nih.gov/pubmed/19043114">exposes patients</a> who will never commit an act of violence to assault by the minority of patients who are, in fact, violent. For example, three patients have been killed in the Thomas Embling Hospital in Melbourne in as many years. </p>
<p>But the main omission in the two Australian articles was their failure to point out that most of the psychotic patients who committed acts of violence were <a href="http://www.ncbi.nlm.nih.gov/pubmed/21724789">not receiving treatment</a>. </p>
<p>Indeed, the more serious the violence, the more likely the patient <a href="http://www.ncbi.nlm.nih.gov/pubmed/22697204">has never had</a> the experience of remission from symptoms such as hallucinations of voices or false beliefs, or a medical explanation for their symptoms.</p>
<p>People with schizophrenia who are receiving treatment are rarely violent, a fact that is evident from the very <a href="http://www.mhrt.nsw.gov.au/assets/files/mhrt/pdf/Annualreportfinal2012.pdf">low rate of violent offending</a> by conditionally and unconditionally released forensic patients in New South Wales.</p>
<p>Only <a href="http://anp.sagepub.com/content/45/6/466.short">12% of non-lethal serious violence</a> by people diagnosed with psychotic illness that were dealt with in the NSW District Court, for instance, were committed by people receiving treatment at the time of their offences.</p>
<p>Rather than the blanket statement that the mentally ill are more violent than other members of the community, the correct conclusion is that while most people with mental illness will never commit an act of violence, people with untreated psychotic illness (and those involved in substance abuse) are more likely than the average person on the street to be seriously violent. </p><img src="https://counter.theconversation.com/content/14173/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Research grant from Jansen
Speaker's fees from Astra Zeneca</span></em></p>Just when we thought we were heading for a more tolerant and accepting attitude toward people afflicted by mental illness, a feature and a news article in Saturday’s The Australian quoting leaders in the…Olav Nielssen, Senior Lecturer in Psychiatry, UNSW SydneyLicensed as Creative Commons – attribution, no derivatives.