Australia’s First National Guideline for Autism Diagnosis

A major study has been launched to develop Australia’s first national diagnostic guideline for autism led by The Cooperative Research Centre for Living with Autism (Autism CRC).

There is strong evidence of substantial variability in autism assessment processes between clinicians, between states and between rural and metropolitan areas. This is leading to delays in diagnosis, misdiagnosis, and inequity in access to services.

Commissioned under a collaboration between Autism CRC and the National Disability Insurance Agency (NDIA), a national guideline will ensure that each individual across Australia has knowledge of, and access to, best practice in autism diagnosis.

The project will be led by Professor Andrew Whitehouse (Director of the Autism CRC Diagnosis Research Program), in conjunction with Clinical Associate Professor John Wray, Professor Margot Prior, Professor Valsamma Eapen and Kiah Evans.

Professor Whitehouse from The University of Western Australia said this project will define a diagnostic process that ensures consistency and accuracy in diagnosis, is feasible to deliver, and acceptable to those on the spectrum and their families.

“The substantial variability that exists across Australia in autism diagnostic processes provides confusion to families, clinicians and government,” said Professor Whitehouse.

“Developing a national diagnostic protocol is a critical step to ensuring consistent and equitable access to autism diagnosis across Australia for both children and adults.”
 
NDIA Deputy Chief Executive Officer, Louise Glanville, said the Agency was committed to co-design and recognised the design of the Scheme must be informed by the lived experiences of participants and people with disability.  

“Working with Autism CRC provides the Agency with an opportunity to participate in an exceptional collaboration with the autism community, researchers, practitioners and service providers to improve the diagnosis and early identification and understanding of autism,” Ms Glanville said.

While access to the National Disability Insurance Scheme (NDIS) is not dependent on a diagnosis, the team will be working closely with the NDIA to ensure the guideline aligns with the processes for entry into the NDIS.

“Our aim is that all those on the autism spectrum and their families are given access to best-practice diagnostic processes. Aligning the guideline with the NDIS from the start will provide an integrated pathway to therapies and timely intervention, which will have enormous benefits for those with the lived experience of autism,” said Professor Whitehouse.

Autism CRC provides the national capacity to develop and deliver evidence-based outcomes through its unique collaboration with the autism community, research organisations, service providers and government.

The study underway is part of a broader collaboration between Autism CRC and the NDIA in research across the lifespan to support the autism community to access evidence-based services.

Autism CRC is the world’s first national research effort focused on autism across the lifespan, working together with the autism community to provide the evidence base to support individuals on the spectrum throughout their lives.  

from http://www.autismcrc.com.au/news/austral...


Dear Ms Cosgrove,

I read with interest your announcement about creating "Australia’s first national diagnostic guideline for autism" (see http://www.autismcrc.com.au/news/australia%E2%80%99s-first-national-guideline-autism-diagnosis).

I have several questions:

  1. Is there a goal or expectation that "Australia’s first national diagnostic guideline for autism" will be consistent with the criteria for Autism Spectrum Disorder published in the DSM-5 (and presumably in the ICD-11 when it is published)?
  2. Will the guideline affect eligibility for Carer Allowance (child) (see https://www.dss.gov.au/disability-and-carers/benefits-payments/carer-allowance)? If so, how?
  3. If the NDIA adopts the guideline, will it pay for the diagnostic process?
  4. Will the project monitor diagnoses to ensure that the guideline does not cause further delay?
  5. The NDIA recently released a video (see https://www.facebook.com/NDISAus/videos/594542027373310/) that says (explicitly) "you don’t need a diagnosis before you start getting help, or even at all". Is the Autism CRC, and this project in particular, comfortable that the NDIA says "you don’t need [an ASD] diagnosis ... at all"?
  6. diagnosis rates for "autism" in Western Australia, where the project leader (and others in the project) comes from, are well below the national average (see http://a4.org.au/node/1233). Will this project bring the ASD diagnosis rate in Western Australia closer to the national average?

 

--
Bob Buckley
Convenor, Autism Aspergers Advocacy Australia (A4)
website: http://a4.org.au/


Subject: RE: Australia’s first national diagnostic guideline for autism
Date: Fri, 7 Oct 2016 01:03:34 +0000
From: Andrew Whitehouse <Andrew.Whitehouse@telethonkids.org.au>
To: convenor@a4.org.au <convenor@a4.org.au>

Dear Bob,

Thank you for your email, which was forwarded on to me. We are, of course, aware of your longstanding interest in diagnosis and prevalence, and welcome your involvement and feedback as we work on this project.  Please find the answers to your questions below.

As a general comment, the development of a national diagnostic guideline is consistent with one of the core program objectives for which Autism CRC received its original CRC Programme funding – the development of an integrated diagnostic protocol for Australia, leading to a reduction in diagnostic age and enhancing accuracy for better matching to the most efficacious interventions.  We welcome the interest of the NDIA in this regard, the Agency recognising the importance of equitable access to accurate and consistent autism diagnosis across Australia.

There will be opportunities during the consultation phase of the study for individual meetings with parties interested in the study, and we’d welcome the opportunity to have a discussion with A4 during that phase.  In the meantime, we’ll include A4 on our register to receive updates as the study progresses.

Many regards,

Andrew

 

  1. Is there a goal or expectation that "Australia’s first national diagnostic guideline for autism" will be consistent with the criteria for Autism Spectrum Disorder published in the DSM-5 (and presumably in the ICD-11 when it is published)?

The focus of this project is not on the behavioural criteria laid out by the DSM-5/ICD-11 to define autism, but rather the process used to appraise these behaviours.  For example, the clinicians involved, the assessments used, and the settings in which behaviours are observed.  This project will seek to develop assessment guidelines that are rigorous in their ability to appraise DSM-5/ICD-11 criteria, acceptable to autistic individuals and their families, and feasible to administer.

  1. Will the guideline affect eligibility for Carer Allowance (child) (see https://www.dss.gov.au/disability-and-carers/benefits-payments/carer-allowance)? If so, how?

As you know, the Carer Allowance is administered by the Department of Social Services, so this question might best be directed to the Department.  This is outside the scope of this project.

  1. If the NDIA adopts the guideline, will it pay for the diagnostic process?

The best practice guidelines are being developed to assist health professionals diagnose autism consistently across the country. While not being mandated, they will be the standard that health and disability systems will work towards. The guidelines will identify the practices and measures that should be included in good autism diagnostic practice.

As per the Council of Australian Governments (COAG) endorsed Principles to Determine the Responsibilities of the NDIS and Other Service Systems, diagnosis and assessment remain the responsibility of the health system. (http://www.coag.gov.au/node/497)

  1. Will the project monitor diagnoses to ensure that the guideline does not cause further delay?

An explicit aim of the Guideline is to develop a diagnostic process that is rigorous, acceptable to autistic individuals and their families, and feasible to administer. The potential implications of the Guideline on waiting list times and the cost of assessment will be critical considerations. 

  1. The NDIA recently released a video (see https://www.facebook.com/NDISAus/videos/594542027373310/) that says (explicitly) "you don’t need a diagnosis before you start getting help, or even at all". Is the Autism CRC, and this project in particular, comfortable that the NDIA says "you don’t need [an ASD] diagnosis ... at all"?

While access to the NDIS is not dependent on a diagnosis, the NDIA will work closely with Autism CRC to ensure the guideline aligns with the processes for entry into the Scheme. The NDIS will deliver a single, holistic, coordinated and equitable system for people with disability. As mentioned at the outset, in line with this, the Agency recognises the importance of equitable access to autism diagnosis across Australia and is acutely aware of the importance of accurate and consistent diagnoses.

  1. Diagnosis rates for "autism" in Western Australia, where the project leader (and others in the project) comes from, are well below the national average (see http://a4.org.au/node/1233). Will this project bring the ASD diagnosis rate in Western Australia closer to the national average?

This project is focused solely on delivering consistent national diagnostic guidelines that will ensure the best outcomes for all children and adults with autism.  It is nationally focussed and therefore would expect to have an impact on diagnostic practices across Australia.