please recognise autism spectrum disorder as a distinct disability type with distinct (and unmet) needs

The Hon Christian Porter MP
Minister for Social Services
Parliament House
CANBERRA ACT 2600

cc: The Hon Jane Prentice MP, Assistant Minister for Social Services and Disability Services

 

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.

The main reason for this letter is because soon after I came out of the meeting above, I saw 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.

The practice of diagnosing people with a different disorder is called diagnostic substitution. There is some evidence that some people who would previously have been diagnosed with Intellectual Disability (ID) as their primary disability are now diagnosed with ASD instead (which is an incorrect procedure for someone with both ASD and ID) and some are diagnosed with both disability types (the diagnostic manual says this correct procedure and ASD is usually the primary disorder). There are indications that 30% to 50% of people with ASD also have ID, the rest do not. 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 children is now well above the prevalence of ID. If all ASD growth were due to diagnostic substitution then there would now be very few, if any, children with an ID as their primary diagnosis today … but there are many children with ID who do not have ASD.

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

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.  An actual increase in the number of autistic children may also "explain" part of the growth in the prevalence of autism.

The second part of the spokesperson’s statement above is 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 already address people’s real (non-ASD) disorders.

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 the research it is funding tried to detect under- or delayed diagnosis of ASD.

Too many ASD diagnoses are delayed. Data 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 diagnoses is far worse than the AMA described recently.

It is alarming and disappointing that your office has the misinformed and dismissive attitude to ASD (quoted above).

It is very disappointing that the NDIA omits 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

  1. accept that a growing number of Australians are being diagnosed with ASD and it is possible that autism prevalence is increasing;
  2. recognise first that ASD is a distinct disability with substantial distinct and unaddressed needs. Recognition itself costs nothing; costs and savings only arise from subsequent action;
  3. recognise that inadequate services for autistic people become more inadequate when spread across a larger population of autistic people;
  4. recognise under- and delayed diagnosis of ASD as a problem;
  5. substantially reduces the age of diagnosis for ASD in Australia; and
  6. develop and implement programs improve outcomes in education, employment, independent living, etc. for the growing number of Australians who are diagnosed with ASD.

We wish you greetings of the season.

--
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.


Subject: Auto-Reply
Date: Wed, 21 Dec 2016 04:47:15 +0000
From: Minister <Minister@dss.gov.au>
To: Bob Buckley (A4 Convenor) <convenor@a4.org.au>

Thank you for your email to the Hon Christian Porter MP, Minister for Social Services. This is an automatically generated response.

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The Hon. Christian Porter MP
Minister for Social Services
http://christianporter.dss.gov.au/