A4 received the letter (see below) from The Hon Mark Butler MP in response to our letter to the Prime Minister (see http://a4.org.au/a4/node/441). The response shows the Minister and his Department:

• prefer to discuss/argue the semantics of terms/phases like "lead agency" and "the remit of" ... rather than address concerns over the mental health of people with autism spectrum disorders (PwASD) and their families/carers.
• seek to continue misleading the Senate over their knowledge of (and disregard for) increasing autism prevalence ... when A4 has presented clear evidence* that a) the Department had at least one document that clearly says autism diagnoses are increasing, and b) that the Department transmitted this information to others. They restate the original question and then argue over the semantics of their version: which is just silly.
• refuse to address the matter that a person or people in his Department, who are either unfamiliar with autism/ASD-related terminology or they persistent in deliberately disparaging autism/ASD as "disability" rather than "disorder", gave advice repeatedly on a subject of which they lack adequate knowledge ... such conduct is inappropriate, both professionally and as a public servant.

In his response, the Minister says over a decade the Government spent $20 million on autism research. This is seriously inadequate research funding for a disorder that ranks so high on the nation's burden of disease and injury. The Government should be embarrassed by such a poor contribution to autism research ... and by its recent decision to not fund an Autism CRC (see http://a4.org.au/a4/node/424).

Surprisingly, the Minister raised the National Autism Register, a project that really is "the remit" of FaHCSIA; hence outside his Ministerial interests. This project made no discernible progress for some time and now appears to be at a stand-still.

He says "the prevalence of autism in Australia was not certain from the available data" ... which is hardly surprising since autism/ASD prevalence (based on the number of recorded diagnoses) is increasing at an alarming rate. For some time, autism prevalence (based on known diagnoses) has been a moving target; so autism/ASD prevalence cannot be described as completely "certain" while diagnosis rate keep changing. The cited report does not support a conclusion that autism prevalence is not increasing or that its level is unknown. This further demonstrates Government's particularly poor understanding of autism issues.

He also says "While some research suggests an increase in the number of autism diagnoses, I have been advised that many international experts have urged caution in interpreting this data". This advice is wrong. First, everyone (with actual knowledge of the subject) agrees there is "an increase in the number of autism diagnoses": this is simply fact, not a matter of interpretation. It is an aspect of administrative record as much as "research". In Australia, data from both the ABS and Centrelink show clearly increasing diagnoses of ASD. Second, "data" is plural so it should say "these data". Some (usually self-professed) "experts" claim (guess without actual evidence) various reasons for why autism/ASD prevalence is increasing. Most credible experts, such as the authors of the recent (very carefully written and reviewed) article in Nature (see http://a4.org.au/a4/node/423) who analysed the various claims/guesses using actual evidence, conclude that a substantial part of the increase in autism/ASD prevalence is real yet unexplained. The 2011-12 Federal Budget (using processes known for cautious interpretation of data) recognised the increasing number of autism diagnoses in young Australian children and consequently increasing funding for the Government's Helping Children with Autism package to provide early intervention packages for more children.

Neither the community generally nor PwASD benefit when Government ignores the mental health needs of a growing numbers of PwASD and their carers.

DoHA prepared a response to A4's letter to the Senate Committee. Their response is available below (note: the Senate Committee did not publish A4's submission, see http://a4.org.au/a4/node/417).

The response to the Senate Committee says:

As Mr Buckley has noted in his letter to the Prime Minister dated 28 August 2011, the Department has responsibility for the implementation of a component of the package, the new Medicare items for the diagnosis and early intervention for children with autism and other pervasive developmental disorders.

Mr Buckley's second concern relates to the statement that the Department is not aware of any evidence of any major shifts in the prevalence of autism in Australia.

The Department answered correctly in stating that it does not collect data on the prevalence of autism in Australia. ...

It is extremely likely that the Department collects data on the number of Medicare items for the diagnosing autism. If it collects this data, surely it can query its Medicare database to see how many diagnoses were funded through Medicare. Such information relates to the prevalence of autism and other pervasive developmental disorders in Australia. So while the Department may not have done such a query or reported the results, it may not be accurate for the Department to say "that it does not collect data on the prevalence of autism in Australia". Hence, the Department may not have answered correctly, contrary to what they told the Committee.

The concern A4 raised was about awareness of increasing autism prevalence, not just about collecting data. Did the Department passed on a document warning about concern over "the widespread increase in the reported prevalence of autism spectrum disorders in Australia and overseas" without being aware of its content? If so, is this proper practice in the Australian Public Service? Is it OK to misinform Senators about autism/ASD?

* Attachment A of the email (7/7/2007) from the Department of Health and Ageing (download from http://www.dpmc.gov.au/foi/docs/ips/disclosure_logs/2011-068_80_Interag…) to staff in PMC and FaCSIA says, "Of very great concern is the widespread increase in the reported prevalence of autism spectrum disorders in Australia and overseas" (page 6).