Call for a more standardised approach to Autism Spectrum Disorder (ASD) assessment!

Alan Jones of radio 2GB Sydney spoke with Professor Andrew Whitehouse and later myself this morning regarding ASD assessment and diagnosis. I think it is important to make this discussion as public as possible and lobby for a standardised assessment process across the country given the timing of the NDIS. Some points to consider:

  1. Unlike other childhood medical difficulties, you cannot diagnose ASD with a blood test or x-ray. We are left to evaluate a set of behaviours and see how they match up to existing diagnostic manuals. As a result, the way diagnosticians interpret the social-communication and repetitive behaviours of ASD they are supposed to look for varies greatly. For example, my definition of limited eye contact and conversation skills might vary greatly to another clinician’s.
  2. This kind of variation means that a family can receive quite different opinions about their child’s diagnosis and end up being steered in the wrong direction for intervention. Imagine how confusing this must be for families comparing opinions and variations in diagnoses across professionals!
  3. There are excellent standardised assessment tools like the Autism Diagnostic Observation Schedule (ADOS-2) and the Autism Diagnostic Interview (ADI-R) that can and should be used as a part of the diagnostic assessment process. These tools have been designed to address the very issue that creates problems with ASD diagnosis, variation and lack of reliability across clinicians.
  4. Training in these kind of tools plus a more standardised assessment process overall is what we need to lobby for. At the moment, the only centres to train in these tools are my centre in Sydney, La Trobe University and Monash University in Victoria and now a graduate certificate program Andrew and his team established last year at the University of Western Australia.  I don’t know who the “experts” are relating to the NDIS but it would be better if they actually spoke with clinicians like myself who do have expertise in this field (rather than academics alone) in order to get a better sense of what is a “gold standard assessment for ASD”.
  5. Gold standard assessment should involve the use of the tools I have noted above (the ADOS-2 and the ADI-R) PLUS observation of the child in their natural setting (e.g., home, preschool or school) and medical review.
  6. The sooner we have a standardised approach to diagnostic assessment for ASD, the better we can assist families relying on us for clarity regarding their child’s diagnosis. This clarity will also have benefits in helping ensure children end up in the right kind of early intervention program as soon as possible. Finally, access to the right kind of intervention from an early age means a more efficient use of scarce government dollars for health and education. Children who gain skills through early intervention will require less intensive support through our already clogged and stretched health and education systems later in their lives.
  7. Finally on the point of early intervention.  Our research into what works here is actually very good now.  It is true that research into good intervention models is young and has, at times, been inconclusive but that is partly to do with large variation in the way we have been assessing and diagnosing the children who enter the research. Nowadays, the best international Autism journals tend not to accept research unless those involved have had an ADOS-2 assessment as a part of entry to the research.  There are excellent, evidence based early intervention programs that require big hours in therapy for the children and families involved.  The more funding that can be given to supporting good early intervention programs the more savings the government will be making in the longer term.
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    • Thanks for the article link. Whilst in the study you refer to girls were shown to make more use of gestures than boys during two ADOS-2 tasks, I would hesitate to draw a broader conclusion that the ADOS-2 as a whole is underdiagnosing girls and possibly, in part responsible for a lack of support for females on the spectrum. Indeed, the codes for gesture referred to in the article are only one of many codes in the ADOS-2 protocol. Several of the codes that form the diagnostic algorithms of the ADOS-2 modules look at the integration of non-verbal communication skills e.g., the combination of gesture and facial expression or gesture and eye contact. When this kind of integration of skills is taken into account, the ADOS-2 is able to pick up well on those at the more subtle end of the spectrum including girls.

  1. Hi Anne,
    My daughter was diagnosed with “high functioning autism” by ASPECT quite late, when she was 11 and a half, in December 2013. You say that only a select few entities have expertise in diagnosing autism but have not mentioned ASPECT, which I was led to believe was one of the leading bodies in Australia for diagnosing autism and offering intervention programs. What is your opinion about ASPECT?

    • Hi Greta, thanks for your important question and the opportunity to clarify my comments further. ASPECT offer a great service. They aim to offer a good team-based assessment process which is what we need to see more people offering. I have had many diagnosticians from ASPECT attend training in the ADOS-2 and ADI-R at my centre over the years. I used to work there myself in the early stages of my career so I have a lot of respect for the good work they do not just in diagnostic assessment but also in comprehensive intervetion and support. To be clear, what I was suggesting is that there are only a small number of locations in the country where people can train up in what are considered the “gold standard” assessment tools to use as a PART of a diagnostic assessment. The other important point is that there is great variation across clinicians at present in how they assess for ASD and the tools they use to do so. ASPECT, myself and some other centres might offer a comprehensive assessment with gold standard tools but others may not. It is this very variation in the assessment process and the tools we use as a part of that process that creates difficulties for families like yours. Imagine if all diagnosticians were following the same kind of assessment protocol in their work. It might well mean that we were doing two things much better: 1. Only “selecting in” those individuals who do genuinely present with an ASD. That is, we might limit any over-diagnosis of ASD. Ensuring that the right people are being picked up in diagnosis is also critical to maintaining an efficient use of funding resources. If we over-diagnose then it stretches scarce funding dollars across too many cases. 2. standardised assessment helps ensure that we do a better job of picking up on those kids at the subtle end of the spectrum as Janine was alluding to in her comment on my blog yesterday. If we are using evidence based tools, multi-disciplinary assessment and standardising that kind of approach nation-wide, then our chances of improving the quality of diagnostic assessment are much higher. That means that our chances of picking up on those children who might have flown under the radar in the past can also improve.

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