Fwd: autism prevalence again

Dear Mr Barr MLA,

below is another letter expressing serious concern about the ACT Government's planning of services for autistic people in the ACT. Surely, autistic people in the ACT deserve better than this.

Our original letter on this matter is available online at: http://sofasd.org.au/d7/node/142

I attached a copy of the Minister's response.

yours sincerely,

Bob Buckley
Chair, Speaking Out for Autism Spectrum Disorder (SOfASD)
a voice for people affected by Autism Spectrum Disorder in the ACT

email: chair@sofasd.org.au
website: sofasd.org.au

-------- Forwarded Message --------

Subject: autism prevalence again
Date: Fri, 18 Dec 2015 20:53:11 +1100
From: Bob Buckley (SOfASD Chair) <chair@sofasd.org.au>
Organization: Speaking Out for Autism Spectrum Disorder (SOfASD) in the ACT
To: Ms Joy Burch MLA <burch@act.gov.au>


Dear Minister Burch MLA,

Thank you for your letter 15/12/2015 that explains how your Government estimates the number of autistic people in the ACT.

Please, note that while Mr Wall MLA introduced the 1 in 160 prevalence estimate for autism in his initial motion, it was the ACT Government who amended then passed the motion. In our view, your Government is responsible for all the content of the motion it passed in the Assembly.

We have no problem with the phrase “affected by autism” as long as we understand what it means. If the term “affected” is meant to include autistic people and their families, which is how SOfASD uses it, then those affected by autism is many many more that 1 in 160. If you mean those diagnosed with autism, then it would be better to say so in the motion.

We do not see why you regard it as “difficult to quantify” the number of children diagnosed with autism; Autism Aspergers Advocacy Australia (A4) and others have done it for years. Quantifying the number of adults is a tad more difficult.

SOfASD objects to the ACT Government's statement:

the ACT Government currently relies on the data provided by the Commonwealth State/Territory Disability Agreement (CSTDA) National Minimum Data Set to indicate [autism] prevalence.

You chose to ignore/dismiss advice on autism/ASD prevalence from the ASD community provided in our letter. Your refusal to accept information from the ASD community in the ACT is a major concern.

The 1 in 160 autism prevalence figure from 2005 Centrelink data for Carer Allowance (Child) was published in the Australian Advisory Board on Autism Spectrum Disorders' (AABASD) report, The Prevalence of Autism in Australia: Can it be established from existing data? (2007). The reports said these data give "the best indication of the likely number of people with ASD in the Australian population". It also said:

the significantly lower prevalence estimated from CTSDA-NMDS data compared to Centrelink data and the substantial between State/Territory variability of this data suggest it has considerable limitations for use for service planning or research.

SOfASD objects strongly to your Government relying on National Disability Agreement (NDA, formerly called CSTDA) data “to indicate [autism] prevalence”. SOfASD claims CSTDA or NDA data has never been a credible indicator of autism prevalence.

For example, the 2012-13 AIHW data cube shows just 13,569 autistic Australian children aged 0-14 years accessed any NDA services, and were hence counted in the NDA-NMDS. Compare this to 53,632 Australian children who were formally diagnosed with autism and registered for Carer Allowance (Child) in the same year. This shows that just 1 in 4 formally diagnosed autistic children got any service via the NDA in 2012-13. This massive discrepancy between those needing services and those getting services is part of the reason for the Productivity Commission describing the old disability system as so dysfunctional.

We don't have access to the detailed CSTDA/NDA-NMDS data for the ACT. Perhaps you could make that information available publicly.

Clearly, the ACT Government's decision to use CSTDA/NDA data in planning disability services denies people with disability, especially autistic people, access to appropriate levels of disability service and support.

Notice that the data we provided in our letter shows there were 777 children aged 0-15 years who were formally diagnosed with ASD in the ACT in 2015. My understanding is that all of those children would be eligible for NDIS and should have been included as NDIS participants by now ... so it is a surprise to find that there are just 571 NDIS participants across all ages with a primary disability of autism at this stage of the NDIS roll out in the ACT.

Also, a major concern is that the introduction of the NDIS in the ACT over 17 months ago dismantled the NDA/CSTDA-NMDS as a source of disability data. It is no longer a credible data source in the ACT.

In any case, autism/ASD diagnoses in the ACT are well below the national average (see http://sofasd.org.au/d7/node/32), as noted in our letter.

The information about the new service starting next year is interesting.

While it may be the case that “the Clinical Services Manager for Therapy ACT met with the CEO of Autism Aspergers ACT earlier this year to share information about the changes occurring with service delivery”, this means little to the ASD community in the ACT. The role of the CEO of Autism Asperger ACT (AAACT) was running the business of AAACT. He was a relative newcomer to autism/ASD; his role was not as a voice for the ASD community. I am confident he would have made that clear to Therapy ACT.

It's unfortunate that AAACT had no discussion with the ASD community in the ACT and passed on very little information about these developments. Basically, the ACT Government is talking to the (aspiring?) service provider and ignoring the ACT-level autism advocates. This is not how the Commonwealth and most other states deal with the disability sector. Governments who are serious about improving services and outcomes for people with disability engage with disability representatives, not service providers. If there are multiple representatives, then they are all engaged. Most Governments aim to be inclusive of people affected by disability.

SOfASD doubts that the ASD community in the ACT would consider "a session with the diagnosing psychologist, a follow up session with a social worker and access to a family group program" as ideal. We've not seen recommendations that ASD families engage with a social worker in relation to autism.

The phrase "demonstrates the ACT Government's commitment to providing early intervention services that will assist children and their families to access appropriate services and supports" demonstrates a profoundly poor understanding of early intervention for autism/ASD. That is not what people mean by "early intervention" in relation to an autism diagnosis.

In conclusion, SOfASD:

  1. objects strongly to the ACT Government using CSTDA/NDA-NMDS data as its basis for planning autism/ASD services and supports in the ACT;
  2. regards your refusal to accept information from the ASD community in the ACT as damaging to planning processes; and
  3. is very disappointed by the lack of consultation with the ASD community in the ACT over plans for new diagnosis and disability services.


Bob Buckley
Chair, Speaking Out for Autism Spectrum Disorder (SOfASD)
a voice for people affected by Autism Spectrum Disorder in the ACT

email: chair@sofasd.org.au
website: sofasd.org.au