letter to Carers ACT

Carers ACT logo

Hi

I was told that at one of your recent workshops, the presenter and a Carer's ACT staff member told a mother of an autistic child that in order for the child to be eligible for the NDIS she needed an updated autism diagnosis if their child was diagnosed under the (pre-2013) DSM-IV.

Please do not tell people this, I understand that this is incorrect. The text of the DSM-5 (available at http://a4.org.au/dsm5-asd), the updated/post-2013 manual, says:

Note: Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder.

This indicates that according to the relevant diagnostic manual a new autism/ASD diagnosis is not required.

Possibly, the NDIA may want more information a diagnosis to guide their planning process, in particular they may be "expecting" a severity level or a functional assessment. Note that a properly formed DSM-5 ASD diagnosis gives two (not one) severity levels. It also provides information about any accompanying intellectual impairment (or its absence), language impairment, medical or genetic conditions, and the status of several other conditions. It's best to look at the link to the DSM-5 description provided above.

It is the responsibility of the NDIS to organise these in a thorough and timely manner. An NDIS participant may want to assist/facilitate the process but they must be given a clear description of who in the NDIA the bills for the service should be sent to.

Please, if you have been given information or have experience contrary to this advice, I suggest you contact A4, SOfASD or possible ADACAS for advocacy assistance. It is crucial that autistic people (and other people with disability) do not encounter barriers to NDIS participation.

regards

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Bob Buckley
Chair, Speaking Out for Autism Spectrum Disorder (SOfASD)
a voice for people living with Autism Spectrum Disorder in the ACT

email: chair@sofasd.org.au
website: sofasd.org.au