National Guidelines for Autism Diagnosis: Help or Hindrance?

Having publicly praised the initiative and work leading up to the release of the National Guidelines for diagnosing Autism Spectrum Disorder (ASD), I had high expectations.  I viewed them with hope.  I thought they might help tidy up the current mess that is ASD diagnosis.  Mis-diagnosis of ASD is rife.  Huge variation exists across clinicians in how they approach ASD assessment; access requests to the NDIS have risen beyond all imagination, in part due to loose standards of ASD assessment and lack of reliability across clinicians.  I don’t know how it happened but somehow what was supposed to be a helpful set of guidelines to reduce the above noted problems has instead become a possible hindrance!!

Released at the Asia Pacific Autism Conference (APAC) two weeks ago, the draft guidelines are now open for public consultation until October 19th 2017.  I would suggest that the current version does not cut the mustard and I would encourage all to make that clear before it’s too late!

What’s wrong with them?  The biggest issue is that they that propose a significant change in what we would have traditionally thought of as the appropriate professionals to diagnose ASD.  In a major shift from international standards, the guidelines propose that Speech Pathologists and Occupational Therapists should be able to individually/ independently diagnosis ASD (if they think it obvious and they have some extra training in ASD assessment).  In a nutshell, this is a very bad idea with long term ramifications.  Think of the long-term problems this creates for families trying to access support via something like the NDIS and what will happen if rates of diagnosis spin out of control because we have suddenly added two new groups of professionals who are traditionally not trained to diagnose ASD but now can!  We are kidding ourselves if we think this won’t cause problems for funding for families desperately in need of support to access much needed treatment eg intensive early intervention. and access to the NDIS.  It has not been carefully thought through!

Please don’t misunderstand me.  I certainly am not trying to offend Speech Pathologists and Occupational Therapists.  Their contributions to certain aspects of ASD assessment and intervention are invaluable and essential.  We have two fabulous Speech Pathologists in our own team at Annie’s Centre.  This is not a one upmanship article trying to claim superiority of different types of professionals over others.  This is simply about matching the appropriate skill set to the appropriate purpose.

Can I suggest that one of the reasons that we seem to be in this pickle is because of misunderstanding the point of an assessment.  A good assessment does not start with trying to answer specifically whether or not a child has an ASD.  Rather, a good assessment considers the child’s broader developmental context and makes hypotheses about a range of explanations for a child’s presentation, one of which might be ASD.  It is this very issue that is being overlooked in ASD assessment today and one of the main reasons we are in this messy state.  Professionals are becoming very good at looking at symptoms of ASD in isolation and assessing for them in isolation, thus throwing labels of ASD around.  However, at the same time, people are losing their point of reference for what is typical development and what are other disorders or conditions that might better account for a child’s presentation eg Anxiety, AD/HD, other behaviour disorders, intellectual delay, other developmental disorders etc.  It is the need to start broader and consider the overall developmental picture of the child that has resulted in Paediatricians, Psychiatrists or Psychologists/Clinical Psychologists) being considered until now as the main professional groups able to make diagnostic conclusions.  The above skill set is part of their basic training and their daily work.  Diagnosis requires thorough understanding of the main diagnostic manuals (eg DSM 5), how to use them and what are the other disorders and conditions listed within them that may account for the way a child presents.  These skills do not form part of the training or daily work of Speech Pathologists or Occupational Therapists.  As such, we should not be recommending that such professionals take up roles as diagnosticians with ASD.

Also worth considering is the question of what further training Speech Pathologists and Occupational Therapists will undertake before we give them the “ASD diagnostician badge”?  Who will set consistent standards for that training?  Will a one-hour course suffice?  Or is it a one-week course?  Or is it working within a multidisciplinary team?  Who will police this very important factor?  Clearly that opens another can of worms.

Although in need of revision, the proposed guidelines do have some significant strengths.  Some notable contributions include:

    1. ‘ASD assessment’ requiring both a diagnosis and information about functional impairments in order to make better recommendations for support for families.I think that giving families clearer directions about where best to start with individualised intervention for their child is most welcome.
    2. A ‘tiered process’ of assessment to try and increase efficiency in assessing individuals where the diagnosis of ASD is extremely obvious vs when it is more complicated.I think reducing strain on scarce health resources and trying to speed up access to support for those in rural and remote areas is also welcome.
    3. The description of a range of additional considerations that are known to have impact on the ASD assessment eg age, gender, intellectual capacity, cultural/linguistic background, differential diagnoses and co-occurring conditions etc.These are helpful in ensuring clinicians cover all bases and the assessment process is thorough.  But they should not replace professional training by providing some kind of checklist for professional groups whose skill set is not diagnosis in the first instance!

Please submit feedback on the portal.  Now is the time to act if you are unhappy about the proposed roles of diagnosticians in the assessment process.  There is a section on the portal specifically entitled “ASD Assessment Roles” where you can tick the relevant box to highlight that this is your particular concern.  I’ve certainly noted my concerns there.  I’d strongly encourage others to do the same.  At the end of the day it is families who will suffer if we don’t sort this out.

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