disappointing response from Minister's office to growing autism diagnoses

The Hon Christian Porter MP
Minister for Social Services
Parliament House


Dear The Hon. C. Porter MP

Thank you for promoting a meeting of Autism Aspergers Advocacy Australia (known as A4) with the Hon. J Prentice MP, Assistant Minister for Disability, on 25th November 2016. I am optimistic that further discussion will lead to benefits for autistic people and people living with autism/ASD around the country.

A4 is the national grass-roots advocacy organisation for autistic people and people living with autism spectrum disorder (ASD) in Australia.

This letter responds to a media story that said:

[A spokesperson for Social Services Minister Christian Porter] added that higher than expected proportion of NDIS participants with ASD reflected the fact that people currently being identified as having the condition were previously classified as having a different primary disability.

"Importantly, increases in the number of Australians being diagnosed with ASD ... do not equate to an increase in the number of people eligible for the NDIS," the spokesperson said.

This response from your office to the fact of "increases in the number of Australians being diagnosed with ASD" is disappointing.

The practice of diagnosing people with a different disorder is called diagnostic substitution.

There is a good reason why some people who would previously (pre-1994) have been diagnosed with Intellectual Disability (ID) as their primary disability are now (post-1994) diagnosed with ASD instead. Since 1994, when the 4th edition of the Diagnostic and Statistical Manual of Mental Orders (DSM-IV) was published, autism was on Axis I and ID was on Axis II in the DSM-IV’s multi-axial diagnostic categories. This means that since 1994, autism has been the primary disability according to the diagnostic manual. The 5th edition (May 2013), the DSM-5, is even clearer: a DSM-5 ASD diagnosis requires (in every instance) a statement saying either “with” or “without” intellectual disability. Growth in autism diagnoses in Australia in recent times (since 1994) is not due to people “having the condition [who] were previously classified as having a different primary disability”. We expect some of the growth in ASD diagnoses is due to clinicians catching up with diagnostic practice and using more current practice.

There are indications that 30% to 50% of people with ASD also have ID. Decades ago, most people (near 100%) diagnosed with autism also had ID. This means that only part of the growth in ASD numbers is due to diagnostic substitution.

Note that ASD prevalence is now above ID prevalence. If all the ASD growth was due to diagnostic substitution then there would now be very few if any children with an ID as their primary diagnosis … but that is just not the case.

It is wrong to claim diagnostic substitution accounts for all the growth in ASD prevalence as fact.

Some growth in ASD numbers is due to children being diagnosed with ASD who were not diagnosed with any disability in the past. Some of these children have mild or moderate disability … but data show most of these “new” diagnoses have severe or profound disability.

So diagnosis of mild and moderate ASD does not account for all the growth in severe and profound ASD.

An editorial in the influential science journal, Nature, says:

The growth in the prevalence of autism can be explained only partly by changes in diagnostic practice.

The phrase "changes in diagnostic practice" includes both diagnostic substitution and shifting the diagnostic boundary or diagnosing less severe cases. Another part of the growth is expected to be actual growth in ASD incidence.

The second part of the spokesperson’s statements above are a serious concern. It indicates “importantly” the belief/expectation that ASD diagnoses do not actually matter; that whatever the NDIS and government's other disability provisions do will be OK for autistic people … presumably because the NDIS and other provisions (designed for their “real” disability type) already address people’s real (non-ASD) disorders.

In recent times, emerging health/medical technologies have seen deceasing numbers of children born with some disability types … like Down Syndrome. There were reducing rates of severe and profound disability in children. Without a real increase in ASD diagnoses, the number of children eligible for the NDIS would be decreasing.

Increasing diagnosis rates for ASD mean that the rate of severe and profound disability in children – most of whom are eligible for the NDIS – is steady or rising.

Currently, your Department is engaged in hunting down alleged barely discernible levels of suspected over-diagnosis of ASD while ignoring under-diagnosis and significant delays in ASD diagnosis. There are no indications that its funded research has tried to detect under- or delayed diagnosis of ASD.

Too many ASD diagnoses are delayed. Data (from Carer Allowance (child)) show that just 30% of autistic children aged 15 years who receive Carer Allowance (child) were diagnosed before 7 years of age, in time to access Government funded early intervention (via either the NDIS or Helping Children with Autism). Effective early interventions is critical to best outcomes for autistic children. Delay in ASD diagnosis and subsequent failure to access early intervention is far worse than the AMA described recently.

Most experts in autism are adamant that early diagnosis and early intervention improve outcomes for autistic people substantially … which costs government and the community substantially less for support and improves economic and general outcomes for the nation.

It is alarming and disappointing that your office apparently has its overly simplistic and dismissive attitude to ASD (quoted above).

It is very disappointing that the NDIA completely omitted diagnosis from its Early Childhood Early Intervention Approach.

Currently, autistic people have abysmal outcomes in education, employment, independent living, etc. The outcomes are significantly worse than those of people with disability generally. Experience shows that autistic people get little benefit from generic disability programs or programs aimed at people with disability other than ASD. Disability programs and services generally leave autistic people behind.

If government wants to improve outcomes for autistic Australians then it needs to recognise first that ASD is a distinct disability with substantial distinct and unaddressed needs. On its own, recognition costs nothing; costs and savings only arise from subsequent action.

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

A4 is the national grassroots organisation advocating for autistic people, their families, carers and associates. A4 is internet based so that Australians anywhere can participate.

“The first step in solving any problem is recognising there is one.” Jeff Daniels as Will McEvoy in The Newsroom.