Autism Assessment: Solving a Puzzle or Making a Buck?

First, there was the study last year showing that clinicians and health professionals vary greatly in how they assess for and diagnose ASD. Some taking much more time and using standardised assessment tools as a part of their diagnostic practices. Others spending far less time and simply briefly observing a child before diagnosing them with a lifelong developmental disorder.

Then, last week, we saw the release of a study showing what we’ve been arguing at Annie’s Centre for a long time…the huge increase in numbers diagnosed with ASD is mostly due to clinicians diagnosing much milder symptoms as being part of the Autism Spectrum.

Professor Andrew Whitehouse, one of the lead authors of the study and Nicole Rogerson, CEO of Autism Awareness Australia are both correct when they say that our understanding of ASD has changed over recent years. Indeed, the latest diagnostic criteria, DSM 5 includes “milder” symptoms that were not included in past versions of the criteria. BUT… something still doesn’t add up…

FACT 1: It is harder to detect ASD at the mild end of the spectrum not easier. There is more possibility of symptoms overlapping with other conditions and more time is required for the diagnostician to rule out other explanations like learning, language, behaviour disorders. In short, the less obvious the ASD the more time one needs to spend ensuring the ASD symptoms are in fact ASD symptoms.

FACT 2: We know clinicians vary hugely in how they go about assessing for ASD and now we also know it is these very assessments which are accounting for the huge increase in ASD numbers. Isn’t it also likely that there is some mis-diagnosing or sloppy diagnosing going on?

FACT 3: It is impossible to have such huge variations in diagnostic practices across clinicians especially at the “milder” end of the spectrum, and still expect that we are doing a thorough enough job of getting ASD assessment right.

The only way that can occur is via consistent national standards for ASD diagnostic assessment practices across all clinicians.

Let’s hope the growing numbers of clinicians “specialising” in this area is only due to them being well intentioned in solving the assessment puzzle and being as thorough as possible for families not because ASD is being seen as a lucrative, growing field.

Posted in Child Mental Health, General.

5 Comments

  1. Thanks Annie. I’m sure there is misdiagnosis, but I hope it’s not because people are just out to make a buck. The book ‘Unstrange Minds’ examined the autism epidemic in the US and specifically the state-to-state variation in diagnosis rates, finding that autism was
    more prevalent in states with proper finding and support for ASD. One paediatrician explained it thus: ‘I’d label a kid a duck if it meant his/her parents got proper financial support.’ (Or words to that effect.)

    So in the past, when there was funding for autism in Australia and not other disabilities, it would have been tempting for clinicians to label a child ‘on the margins’ with autism so their parents could access that specific funding; that is, well-intentioned ‘rorting’ of the system. That might change under the NDIS anyway, where I I understand funding is needs based rather than diagnosis based.

    • Thanks for the thoughtful comments Benison. I agree, there has definitely been well-intentioned “rorting” of the system. The problem with that is, whilst people might have the best of intentions, it spreads the funding too thinly and those who genuinely do have significant needs end up receiving less than what they might otherwise if those on the “margins” or indeed those who have been falsely labelled with ASD did not get picked up. There is no doubt that across the board more children seem to be struggling with a range of developmental challenges and we are better at picking up on them and those children benefit from early support. However, as you know, there is also not a bottomless cup of funds for all. Unsustainable funding programs, will either soon start to place more stringent criteria around diagnoses or the other alternative is we might see what occurred with ADHD years ago in that it will no longer attract any funding. I hope that is not the case. You are also right in your point about the NDIS. I am not sure anyone fully understands how it is going to work and whether it will be sustainable once it is fully rolled out. Regardless, although it is apparently not diagnosis based, those who do not have a diagnosis listed in an appendix (when you look at the list it includes ASD and many of the diagnostic labels that are funded under the current “Better Start” program) have to show more evidence of their needs by proving their needs further through reports and letters from health/allied health professionals. So there is still a clear emphasis on diagnosis as a more straightforward pathway to funding.

  2. Hi Anne, can you advise which organisation would be considered an expert onthe diagnosis of ASD? My daughter was diagnosed in December 2013, at age 11 and 9 months by Aspect Australia, and I still have my doubts about whether the diagnosis was correct. It is a minefield and a terrible anguish for families having to go through, on top of living with a child presenting with such symptoms. How is this diagnosed, and what are the standardised tests carried out in other developed countries in Europe, and in the UK and the US? Shouldn’t the developed world just have the one approach, rather than each country diagnosing this condition differently? Appreciate your feedback.

    • Hi Gina, thanks for your comments and questions. Although there is variation in which assessment tools are used, you are absolutely right to suggest that we need a consistent international standard when it comes to ASD assessment. People might vary in which specific tools they use, although we prefer the gold standard of the ADOS-2 and the ADI-R among others that we use but the process should essentially be the same: screening measures, interviewing parents, observing the child in a natural setting (e.g., preschool or school), interviewing or giving some kind of checklist to a preschool teacher/school teacher, the use of standardised diagnostic assessment tools (like the ADOS-2 and the ADI-R), medical evaluation, language/communication evaluation. Aspect is traditionally good at adopting the above noted process for their diagnostic assessments. Trust this assists.

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