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 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. 

A report from  the Australian National Audit Office (ANAO) said that in February 2014 the Department of Social Security (formerly FaHCSIA) funded $50,000 worth of research to establish "the extent of [ASD] over-diagnosis nationally". 

A Deputy Secretary of DSS wrote back that

this wording is not intended to presuppose the findings of the Autism CRC report.

The Department apparently accepts (does not deny) their wording clearly pre-supposes the existence of autism over-diagnosis. However, the actual intent is now unknown. It is hard to imagine how a contract could be signed without anyone noticing this (unintended?) presupposition. A4 will be disappointed in the Autism CRC if it undertook research based on the questionable premise that parents/families and/or professionals are fabricating diagnoses of a medical condition. Credible research would not presume over-diagnosis exists; it would first need to establish that over-diagnosis really exists.

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.

An estimated 1 in 68 (14.6 per 1,000) school-aged children have been identified with autism spectrum disorder (ASD), according to a CDC report published today in the Morbidity and Mortality Weekly Report (MMWR) Surveillance Summary. This report shows essentially no change in ASD prevalence, the proportion of school aged-children with ASD, from the previous report released in 2014. However, it is too soon to know whether ASD prevalence in the United States might be starting to stabilize. CDC will continue tracking ASD prevalence to better understand changes over time.