Autism Aspergers Advocacy Australia

By Annabel Crabb

The very existence of the National Disability Insurance Scheme - to begin national operation this Friday - is a powerful rebuttal to that contemporary whine about big policy reforms being too hard for our short political attention spans, writes Annabel Crabb.

Being sick of this election campaign is now the leading sentiment on which Australians of voting age most fervently agree.

A new study has found many Australian children with autism spectrum disorder (ASD) may not be diagnosed until long after initial signs appear, prompting calls for improvements to the diagnostic process.

Researchers from QUT's School of Psychology and Counselling conducted a national study of paediatricians, psychologists and psychiatrists to investigate issues related to ASD assessment and diagnosis in children.

The NDIA has released some new information  about how it will deliver Early Intervention for children. I surmise that the approach described in the NDIA's Market Position Statement for South Australia (June 2016) will apply pretty generally. This information is aimed at service providers, not at (prospective) NDIS participants, so it does not really explain the new approach for that audience. 

On page 22, the document says:

Disability Australia calls on all political parties to support our Election Platform to address the chronic disadvantage of people with disability.

We ask all major political parties to maintain a long-term commitment to the following five objectives:

Connie Vella had high expectations for the National Disability Insurance Scheme and what it would mean for her four-year-old daughter Hannah, who has bilateral hearing loss.

The Cranebrook woman went to her meeting with an NDIS planner earlier this year, well prepared with quotes from a range of hearing specialists and a list of the supports Hannah would require.

All up, the quotes came to $34,000 including early intervention services, speech pathology, language therapy, a school readiness program and hearing aids.

Mrs Vella was stunned when the planner returned with a package worth $12,000.

"It was a massive gap," she said. "We are supposed to be no worse off under the NDIS. We're a lot worse off. I'm a good advocate for Hannah but there are families out there who'll just accept what's on offer and that worries me for these children."

The histogram shows the prevalence calculated from the population of children who receive Carer Allowance for Autistic or Asperger's Disorders (DSM-IV) or Autism Spectrum Disorder (DSM-5) at June 2014 relative to the ABS population numbers for the age group ... on both a national and a state/territory basis. 

There is clear variability in diagnosis rates between states/territories with the Northern Territory, Western Australia and the Australian Capital Territory having notably lower diagnosis rates for autism/ASD, well below the national average.

The latest Burden of disease study from the Australian Institute of Health and Welfare (AIHW) puts "autism spectrum disorders" as 14^th for males in their list of non-fatal burden (of disease) - see Table 4.3, page 36. "Autism spectrum disorders" rank 3^rd for males ages 5-14 years in the "total burden" given in Figure 3.6, page 26, but autism is otherwise absent.  This study is based on data from 2011. 

Rick Morton, Social Affairs reporter; Melbourne

The bosses of the $22 billion ­National Disability Insurance Agency lamented their lack of control of the autism “narrative” at a meeting this year in which they finalised a plan to curb ballooning costs, documents show.

ACT schools must now follow strict new guidelines on placing students in withdrawal spaces, as part of the government's response to the autism cage scandal.

The guidelines stipulate that withdrawal spaces should not be locked and students must not be prevented from leaving.

But the protocols do include references to the potential use of physical restraint and seclusion under which a student can be confined in a room that they cannot leave. Both are considered one-off options of the last resort.

Dear Social Worker,

Please understand that when you are dealing with an autistic child you may be communicating with an autistic parent.

When a mother is being misunderstood …

You may interpret her communication as obstructive when she has a social communication disability. She is doing her best. When you are starting to ‘get your back up’ please stop and rethink and rephrase.