A SUMMARY OF AUTISM DISCOVERIES IN 2016 AND WHAT THEY MEAN TO FAMILIES

For decades, the autism community has known that autism affects the entire family. Biological parents have been included in autism studies to examine where genetic mutations come from, but always with an eye for understanding the affected individual. This year in research saw a much bigger focus on family members of those with autism, particularly siblings. The goal of these studies is to understand the genetic and biological nature of autism so that help can be provided not just to those with a diagnosis, but to family members.

Many studies focused on what is known as the broader autism phenotype, previously explored in biological parents. The broader autism phenotype refers to some behavioral features of autism, including those in emotion, language, and social skills that do not meet the level of a diagnosis of autism spectrum disorder. Rather, they have been termed anything from “intermediate” autism to “a hint of autism.” Joe Piven and James Harris hypothesized this year that Bruno Bettleheim may have tragically misinterpreted these features, in the absence of a true understanding of autism, as “refrigerator mothers.” Clinicians have urged scientists to note these symptoms in a way that does not create a new diagnostic category and noting certain social, personality and language characteristics in family members has been crucial for nailing down the underlying biology.

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

Dear The Hon. J Prentice MP

Thank you for the Christmas card that you sent me.

However, I am concerned. When we met recently, it seems your staff had advised that Autism Aspergers Advocacy Australia, known as A4, was excluded from your disability consultation processes because organisers in your Department did not have A4's address; they claimed that they didn't know which state A4 was located in so A4 was left off all the lists.

But they did know the address to send a Christmas card to A4's Convenor.

The Integrated Plan for Carer Support Services (the Plan) seems to fall well short of needs.

In a quick review (conducted December 2016), the Carer Gateway (see http://www.carergateway.gov.au/) was unhelpful. In particular, it lacked sensitivity to location and disability type(s).

Mr Bob Buckley

Convenor

Autism Asperger’s Advocacy Australia

convenor@a4.org.au

Dear Mr Buckley

Thank you for your email of 12 October 2016 to the Assistant Minister for Social Services and

Disability Services, the Hon Jane Prentice MP, regarding best practice early intervention for

autistic children and continuity of supports under the NDIS. The Minister has asked me to reply

to you on her behalf.

Dear Ms Gunn

Thank you for your letter (3/11/2016).

In it you wrote:

The Agency continues to consult with experts such as the Cooperative Research Centre for Living with Autism and advocacy groups around the ECEI approach. The Agency values the experience and knowledge from these important groups of stakeholders.

Please would you provide the complete list of the experts that the NDIA consults relating to the provision/delivery of the NDIS for autistic people? And please would you explain how the Cooperative Research Centre for Living with Autism is a “stakeholder” in the NDIS.

We understand this means the NDIA will not consult with Autism Aspergers Advocacy Australia (A4).

The Hon Jane Prentice MP
Member for Ryan, Queensland

On 11/11/2016, A4 received a letter (dated 9/11, see below) from Assistant Minister The Hon Jane Prentice MP in response to A4's email that contained a meeting request. A4 sent a copy of the original letter to the Assistant Minister. 

The letter mentions a response from the NDIA and says the "letter is enclosed" ... but it wasn't.

Dear The Hon Jane Prentice MP

I write about the promise that “that no one will be worse off under the NDIS” (see here). My particular concerns relate to autistic children and their access to impartial information and effective (best practice) early intervention.

I am writing to you because writing to the NDIA (see here, here, here and here for example) made no discernible difference (on these, or any other significant issue)