Autism CRC collaboration with National Disability Insurance Agency

Autism CRC provides the national capacity to develop and deliver evidence-based outcomes through its unique collaboration with the autism community, research organisations, industry and government. Consistent with this, Autism CRC has developed a working relationship with the National Disability Insurance Agency (NDIA) to facilitate relevant research that will assist with consistent autism diagnosis across Australia and identify interventions that will contribute to positive outcomes for individuals with an autism diagnosis.

Recent media reports have referred to research projects being facilitated by Autism CRC with support from the National Disability Insurance Agency (NDIA). The purpose of this statement is to clarify the nature of these research projects, their objectives and the desired outcomes.

There are two such projects.

The first project sees the development of Australia’s first national guideline for autism diagnosis, a critical step to ensuring consistent and equitable access to autism diagnosis for children, adolescents and adults.

Autism diagnosis in Australia is not a straightforward task for several reasons:

• diagnosis is based on clinical judgement of behavioural presentation;
• variability in autism symptoms, together with considerable behavioural overlap with other developmental conditions; and
• clinicians have varying levels of skill and experience.

In addition, a review of diagnostic practices in Australia conducted by Autism CRC highlighted considerable variance exist between diagnostic practices across and within Australian states and territories, with these variances likely contributing to the inconsistent provision and availability of public services and support for autistic individuals and their families.

The development of the diagnostic guideline involved an extensive consultation process with the clinical, research, and consumer community, resulting in a series of consensus-based recommendations for clinical practice, each of which is cross-referenced by a table of evidence.

The guideline aims at a consistent and efficient diagnostic process across Australia, so that diagnosis occurs at the earliest opportunity and everyone might receive the resources they need, regardless of age and location, and make informed decisions in this regard.

The guideline has now been submitted to the National Health and Medical Research Council (NHMRC) for content review.

The second project seeks to identify which interventions are the most effective in creating positive outcomes for any given individual with an autism diagnosis. While it is critical that children on the autism spectrum get access to timely and targeted early intervention, there is considerable variability in how children respond to these therapies. The aim of the research is to provide an evidence base that will help guide families and clinicians towards the therapy approach that may best maximize outcomes for any given child.  

In formulating Autism CRC’s program, the autism community and clinicians have provided strong guidance to the CRC that this is a major area of research need, and this project has been a key part of our research program since our initial bid for funding in 2011. In 2017, the NDIA provided additional financial support for the continuation of this project, which partners with the Autism Specific Early Learning and Care Centre in each state of Australia.

This project is contributing to a worldwide research effort to provide an evidence base that identifies the most effective individualised therapies. This research outcome is critical to providing each newly diagnosed child the best opportunity to reach their full potential.

Some references in the media have implied that this work seeks to amend the definition of autism in Australia. This is not correct. The behaviours used to define autism are published in international diagnostic manuals. It is neither the intention nor the desire of Autism CRC to work towards any research goal that would undermine these well-researched and universally accepted manuals.

Further, an assertion that either of these research projects will identify ‘autism subtypes’ that could be tied to support packages indicates a misunderstanding of both autism and the research process.