Autism diagnostic standards fall short of the mark

Few would disagree that the mark of a successful health and medical system is its ability to respond quickly and effectively to improve the well-being of the population it serves.

So much of achieving this goal comes down to early and accurate diagnosis.

Consider the example of cardiovascular disease, which is among the most common causes of chronic ill-health in Australia. In many cases, cardiovascular disease is preventable or treatable, but these positive outcomes rely entirely on identifying the condition accurately and planning treatment accordingly. Anything less will compromise the long-term wellbeing of the individual.

While developmental conditions such as autism spectrum disorder are very different in nature, the underlying principles of care are exactly the same. Positive outcomes are irrevocably tied to early and accurate diagnosis. Unfortunately, this is a mark that Australia is far from meeting.

A report released today by the Cooperative Research Centre for Living with Autism and the Department of Social Services shows the stark reality of just how far away we are.

The report surveyed over 100 health professionals from around Australia who provide autism diagnoses. The main finding was the considerable variability in how diagnostic assessments are conducted across Australia.

A large number of health professionals reported using the ‘gold standard’ method for diagnosis, which involves an expert team using well-recognised standardised assessments. However, a substantial minority of health professionals employed less rigorous diagnostic approaches that didn’t include well-recognised assessments, multiple team members and observation across different settings. These elements are often critical to make an accurate diagnosis of autism.

The report also revealed the obstacles that often stand in the way of an autism diagnostic assessment. A wait list time of over 12 months was not uncommon, and the cost of this assessment could be over $2,500.

It is impossible to reconcile the findings of this report with the stated aim of the health system to respond quickly and effectively to improve the wellbeing of the population.

There are now dozens of examples of where the Australian community has acted to reveal the vast potential of individuals on the autism spectrum. Governments that once favoured bandaid solutions are now investing in people with disability through the immeasurably important reform of the National Disability Insurance Scheme. An employment sector that was once blind to the huge capacity of individuals on the autism spectrum, now prioritises these individuals because of the skills and strengths they can bring the organisation. A community that was once characterised by silence is now a thriving collaboration of vocal advocates.

Substantial research has shown that early diagnosis and therapy leads to the most positive outcomes in terms of education, employment and independence. The corollary is that without a uniform system of early diagnosis – which the report highlights is the case in Australia – we are not providing the best start to life.

Perhaps most importantly, the solution for Australia is far from intractable. The development of national, standardised guidelines for how autism is diagnosed will have a massive and positive change that will benefit the whole of Australia. This will provide individuals on the autism spectrum and their families with certainty about a diagnosis, help guide clinical decision making, and give the more than 1% of Australians who live with autism the best opportunity for a happy and healthy life.

Early and accurate diagnosis is what we demand for every other condition, and it’s what we must demand for autism. Anything less will be short-changing Australia’s future.