Autism Aspergers Advocacy Australia

A review of the ACT Government's latest report on services for people affected by autism spectrum disorder (ASD) gives the ACT Government a "fail".

Executive Summary

The Legislative Assembly asked the ACT Government to report on “support provided for autism diagnosis and services and the potential for further reforms”. The Minister presented the report to the Assembly in May 2013. Following numerous requests, the Minister gave a copy of the report to representative of people affected by autism spectrum disorder (ASD) on 23/4/2014. The Minister took 11 months to hand over a copy of the report to the ASD community in the ACT.

This review of that report finds that the ACT Government's information about ASD and the service and support needs of people affected by ASD is often incorrect. For example, the report under-estimates the number of Australian children diagnosed with ASD by an enormous factor of three (3).

A presentation (see this) at the International Meeting for Autism Research (IMFAR) 2014 shows from health insurance records (from USA) that people with autism spectrum disorder (ASD) have higher rates of some other health issues than do people without ASD.

A recent media release (see http://www.cdc.gov/media/releases/2014/p0327-autism-spectrum-disorder.h… ) says

The Centers for Disease Control and Prevention (CDC) estimates that 1 in 68 children (or 14.7 per 1,000 eight-year-olds) in multiple communities in the United States has been identified with autism spectrum disorder (ASD). This new estimate is roughly 30 percent higher than previous estimates reported in 2012 of 1 in 88 children (11.3 per 1,000 eight year olds) being identified with an autism spectrum disorder. The number of children identified with ASD ranged from 1 in 175 children in Alabama to 1 in 45 children in New Jersey.

Note that recent (2012) Australian data on the prevalence of ASD shows 1 in 62 children in this country have a diagnosis ... see http://a4.org.au/a4/node/695 and http://a4.org.au/a4/node/622 There is nothing to celebrate in rising autism rates because people who are properly diagnosed with autism have significant disability that "requires support".

Australia's National Disability Insurance Scheme's (NDIS) Operational Guidelines – Access are dysfunctional in relation to autism spectrum disorder. The NDIS fails many people with autism spectrum disorder (ASD), denying them the services and supports they need.

People with ASD are among the most vulnerable and disadvantaged people in Australia. The Government is not giving people with ASD a fair go. The message is simple. Government needs to act to support people with ASD and to improve their outcomes. The NDIS eligibility criteria are designed to exclude some people with autism spectrum disorder from the NDIS, people who are assessed as needing disability services by allied health professionals with specific expertise in ASD. And for those people with ASD who are deemed eligible for the NDIS service and support, NDIS individual planners (gatekeepers), who mostly lack expertise in and understanding of autism, reject some requests for essential disability services and supports.

Following is the evidence and justification for this simple claim that the NDIS, the scheme created to address the enormous disadvantage that Australians with a disability experience, in its initial implementation is failing people with ASD.

More information is now available about the policies of the major parties relating to people affected by autism spectrum disorder ahead of the Tasmanian state election. You can download information from the three major parties from the following links:

• Labor Party
• Liberal Party
• The Greens

  A brief summary is that:

The NZ High Court "found that Green Bay High School in Auckland was not justified in excluding a student with Asperger's syndrome, following a row he had with a teacher." [see article]. This may not be over yet.

I am not a lawyer and I do not know NZ law. I know that under international law, paragraph 3 in Article 23 of the United Nations Convention on the Rights of the Child (CRoC) says every child has a right to "education, training, health care services, rehabilitation services [and] preparation for employment" ... and that "the state" is ultimately responsible for ensuring this happens. Specifically, in relation to children with a disability, the CRoC says ...

... assistance ... shall be provided free of charge ... and shall be designed to ensure that the disabled child has effective access to and receives education, training, health care services, rehabilitation services, preparation for employment and recreation opportunities in a manner conducive to the child's achieving the fullest possible social integration and individual development ...

The [UK] National Institute for Health and Care Excellence (NICE) has today published its Quality Standard on autism setting out what good services for children and adults with autism should look like.

Conclusion: Autism is an expensive condition. Previous cost research may underestimate the total cost of supportive care ...

see http://www.policyschool.ucalgary.ca/?q=content/value-caregiver-time-cos…

Increased awareness of autism spectrum disorder (ASD) is placing huge demands on health care systems and health care professionals to help children and their families cope with the disorder. A comprehensive evidence-based review published in CMAJ (Canadian Medical Association Journal) aims to help physicians provide appropriate medical support to families of children with ASD, from detection to treatment.

Susan Boyle: diagnosed with Asperger's syndrome. Photo: Getty Images

Scottish singer Susan Boyle has revealed that she has been diagnosed with Asperger's syndrome, a high-functioning form of autism.

Boyle, a 52-year-old church volunteer who became a global singing sensation, told Britain's Observer newspaper she had been diagnosed a year ago and spoke of her relief after years of bullying for her learning difficulties.

I think people will treat me better because they will have a much greater understanding of who I am and why I do the things I do.

"It was the wrong diagnosis when I was a kid," she said.