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:
- 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.
- 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!
- 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.
- 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”.
- 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.
- 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.
- 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.