Receiving a diagnosis of an autism spectrum disorder (ASD) has a major impact on an individual and their family. As well as providing an explanation for why a child might be experiencing certain difficulties, the diagnosis is generally thought of by parents as the point at which they can access support for themselves and their child.
But despite increased rates of autism, coupled with heightened public awareness of Autism Spectrum Disorder, our research shows that often it is actually getting the diagnosis which is proving to be a difficult and lengthy process.
We surveyed more than 1,000 parents in the UK who had experienced the diagnostic process for their child. We found that on average, parents had to wait three and a half years before their child got a confirmed diagnosis of ASD.
Given these lengthy delays, it is perhaps not surprising that just over half the parents we surveyed were dissatisfied with the diagnostic process as a whole – and most found the process stressful.
A stressful process
Children and adults with ASD have difficulties interacting socially and show unusually repetitive behaviours, interests or routines. ASD can affect different people in different ways.
Until very recently, children and adults on the autism spectrum received different labels, such as “classic autism” or “Asperger syndrome”, to explain their behaviours. However, in recent years – and not without controversy – there has been a move towards providing a more generic label to anyone displaying the key signs of ASD.
ASD is not rare. UK figures estimate that it affects around one in 100 people. More recent statistics from the US suggest this figure could be as high as one in 68. Public awareness of ASD is increasing too – from high-profile celebrities revealing that they or their children are on the autism spectrum, to popular awareness-raising campaigns led by charities, almost everyone feels they know about autism. So if many of us now know much more about it, why does diagnosis take so long?
‘Autism’ or ‘Asperger syndrome’
Although our results showed that some parents waited around three and a half years to get their child’s ASD diagnosis confirmed, this varied widely – some parents were able to get their child diagnosed almost straight away, whereas others had to wait several years. Looking at our results more closely, this seemed to be linked to the type of ASD that the children had.
Children assigned the label “autism’ were diagnosed much quicker than children with the label "Asperger syndrome”. This is probably because the signs of Asperger syndrome are more subtle than the signs of autism.
When a parent flags that their child isn’t talking at the age of two, and they aren’t engaging socially with their parents (as is often the case for those with autism), alarm bells start to ring. But when a child is speaking fluently and achieving their developmental milestones (as commonly found in children with Asperger syndrome), parents and professionals may overlook their social awkwardness or dismiss their autistic behaviours as “quirks”. It may not be until several years later, perhaps when the child starts school, that the challenges associated with their autism become apparent.
What needs to be done?
Although our survey showed that parents were very astute to the early signs that their child was developing differently, healthcare professionals didn’t always act on these concerns.
In many cases this was due to service inefficiencies. Occasionally, it was in the child’s best interests to wait and see whether the behaviours changed over time – effectively delaying a diagnosis – to avoid the risk of labelling a child who later outgrows these behaviours.
This is at odds with the views of parents, who want the diagnostic process to be quicker and easier. This is because parents feel that the autism label will get them the help and support that their child needs. This emphasises the need for parents and professionals to have a more open dialogue during the diagnostic process.
From label to need
Moving towards a system where the provision of services is based on addressing the specific needs of the child, rather than relying on a label, would help overcome this. This is perhaps easier to implement in the UK than in other parts of the world; in the US, for example, a diagnosis is needed in order to access healthcare insurance for any interventions.
We also mustn’t forget that autism is not a childhood condition. A growing number of adults are recognising that they might be on the autism spectrum and are seeking a diagnosis later in life. The same issues still apply. Although there is some indication that the situation is improving for autistic adults (for example the process is getting quicker), we still have a long way to go.
In a parallel survey that we ran, considering the diagnostic experiences of adults, the lack of awareness of autism among front-line healthcare professionals was also highlighted. One woman who took part in this survey recalled how she approached her doctor to suggest she was on the autism spectrum and was met with the response: “Why would a nice lady like you want a diagnosis like that?”
Moving forward
Efforts are being made to improve the diagnostic process here in the UK. The Autism Act 2009, which aimed to improve services for the autism community, was heralded as a landmark piece of legislation. It led to the subsequent autism strategy for England in 2014, which provides statutory guidance concerning the autism diagnostic process. This includes the need for specialist autism training to be provided for key staff (for example, family doctors), and for the development of a clear pathway to diagnosis and assessment for children and adults with autism. Guidelines from NICE also aim for a consistent approach to referral and diagnosis across the UK.
How successful have these initiatives been? Only time will tell. But more than anything else, we need to continue consulting parents and autistic people about how their needs can be met, while including healthcare professionals in this dialogue. It is only by addressing the concerns of different groups – along with the guidance – that we can continue to improve the autism diagnostic process.