diagnoses and advice for autistic children

Subject: Fwd: diagnoses and advice for autistic children
Date: Sat, 9 Jan 2021 12:35:56 +1100
From: Bob Buckley (A4 Convenor) <convenor@a4.org.au>
To: Minister.Hunt@health.gov.au
CC: Chris.Bowen.MP@aph.gov.au, Senator Jordon Steele-John <senator.steele-john@aph.gov.au>, The Hon. Linda Burney MP <Linda.Burney.MP@aph.gov.au>, The Hon. Mr. Shorten MP <Bill.Shorten.MP@aph.gov.au>, The Hon Stuart Robert MP <stuart.robert.mp@aph.gov.au>

Dear The Hon G. Hunt MP

Autism Aspergers Advocacy Australia (A4) recently sent this letter to the organisations below. We are very concerned about delayed diagnosis of autistic children and the consequent long-term detriment this brings for them, their families and the community generally.

We believe that the federal health Department also has responsibilities and a significant role to play in addressing the issues raised.

Bob Buckley
Convenor, Autism Aspergers Advocacy Australia (A4)
website: https://a4.org.au/

Autism Aspergers Advocacy Australia, known as A4, is the national grassroots organisation advocating for autistic people, their families, carers and associates. A4 is internet based so that Australians anywhere can participate.
Note for politicians and bureaucrats – Autism Aspergers Advocacy Australia's policy on unanswered questions is available at https://a4.org.au/node/1419.

“The first step in solving any problem is recognising there is one.” Jeff Daniels as Will McEvoy in The Newsroom.

-------- Forwarded Message --------

Subject: diagnoses and advice for autistic children
Date: Thu, 7 Jan 2021 08:54:00 +1100
From: Bob Buckley (A4 Convenor) <convenor@a4.org.au>
Reply-To: convenor@a4.org.au
Organisation: Autism Aspergers Advocacy Australia
To: racp@racp.edu.au, paediatrics@markdesouza.net, racgp@racgp.org.au

 

Dear sir/madam

Autism Aspergers Advocacy Australia, known as A4, represents and advocates for autistic Australians, their families and associates. Autistic Australians are people who are diagnosed with autism spectrum disorder (ASD).

We are concerned that diagnoses and advice autistic children currently get in Australia are often delayed, or are for "developmental delay" instead of ASD.

A recent NDIS dataset contained the following raw numbers. We added percentages.

 

Developmental Delay

Global Developmental Delay

Intellectual Disability

autism/ASD

All NDIS

0 to 6

23464

6404

3633

20427

61962

37.9%

10.3%

5.9%

33.0%

 

7 to 14

3306

1235

14540

64016

97834

3.4%

1.3%

14.9%

65.4%

 

Clearly, a significant number of autistic children (~33% of NDIS participants aged 0-6 years) are diagnosed aged 0-6 years. However, these data show almost half (>48%) of the children in the NDIS 0-6 year old age range are diagnosed with Developmental Delay (Section 9 of the NDIS Act 2013) or Global Developmental Delay (DSM-5). These data suggest that a high percentage of children are first diagnosed with a developmental delay, then their diagnosis is later changed to ASD. Delay in getting their ASD diagnosis is a major concern.

Numerous research reviews, both in Australia and overseas, show that early intervention that is comprehensive, intensive, individualised and autism-specific provides most autistic children with substantially improved lives. The Australian Government provides early intervention for autistic children up to age 6 years through its NDIS.

Unfortunately, only a small fraction of autistic children are diagnosed with ASD in time to access the early intervention that they need. NDIS data shows most children are diagnosed with ASD after age 7 years, too late for NDIS-funded early intervention.

Also, many younger children are diagnosed first with Developmental Delay or Global Developmental Delay, which appears to be changed to an ASD diagnosis later on. The high numbers of interim developmental delay diagnoses is concerning. It is likely that these diagnoses become barriers for autistic children's access to early intervention for their ASD.

Note that there have been numerous detailed reviews of early intervention for autistic children; the research evidence is substantial and the conclusions have been remarkably consistent.

While a number of reports have been written about generic early intervention, little evidence is presented and outcomes are barely reported. And there is no evidence that generic early intervention benefits autistic children.

So it is important that autistic children are diagnosed as early as possible and their families are advised about best practice early intervention for the child's ASD. We feel there is substantial room for improving the diagnosis of ASD in young Australian children. We would be happy to discuss this further if you are interested.

--

Bob Buckley
Convenor, Autism Aspergers Advocacy Australia (A4)
website: https://a4.org.au/

Autism Aspergers Advocacy Australia, known as A4, is the national grassroots organisation advocating for autistic people, their families, carers and associates. A4 is internet based so that Australians anywhere can participate.
Note for politicians and bureaucrats – Autism Aspergers Advocacy Australia's policy on unanswered questions is available at https://a4.org.au/node/1419.

“The first step in solving any problem is recognising there is one.” Jeff Daniels as Will McEvoy in The Newsroom.