Dear Lorna

Thank you for getting in touch.

I have major concerns about the use of psychotropic medications and behaviour supports for autistic people in a range of settings.

I'm interested that the Royal Commission includes "autism" in "cognitive disability" - usually autism  is omitted from any consideration. Some people would argue that it's not an appropriate category, but I very much appreciate that autism is included somewhere.

We don't have much statistical data about autistic people being restrained with psychotropic drugs. We know it happens. We know any data is likely to be unreliable because we expect only one in ten autistic adults actually have a diagnosis. We expect some are diagnosed with Intellectual Disability as their primary disability.

We have reason to believe that many people regarded as "non-responsive" to treatment in the mental health sector may have autism. What often seems to happen is they come in for treatment for depression, anxiety or trauma but because treatment does not "cure" their autism, treatment is regarded as ineffective. It may be that recognising and accepting their autism would mean the focus could be given to treating their mental illness - anxiety, depression, trauma, etc. - the appropriate supports for their autism could be given and would be much more effective.

So that's what usually happens since it seems most (about 9 in 10, and a higher rate for women) autistic adults don't have a diagnosis.

If you have an autism diagnosis, many mental health clinicians refuse to treat you claiming they can't help you, they weren't trained or just don't know how to help ... or their experience is that they can't cure autism so they feel they can't offer any help at all. They may suggest you seek support elsewhere, but they have no idea who to suggest (they just deny that support for autistic people does not exist and "the system" hasn't even tried to keep pace with demand).

A4, my organisation, does not normally get involved in supporting individuals - we are volunteers struggling to do systemic advocacy; we are not funded or trained for individual advocacy. However, we sometimes get involved when no one else can help. An example can be seen here: https://a4.org.au/node/2069

One of A4's major concerns is Australia's lack of a registration system for behavioural clinicians. Basically, anyone can claim to be a behavioural clinician. At present, clinicians can register with the international Behavior Analysis Certification Board but this is due to change - I understand that registration will not be available for clinicians in Australia in the foreseeable future. Australia desperately need proper professional registration for behavioural clinicians, and many autistic Australians need services and supports from properly trained and registered clinicians (see https://www.smh.com.au/opinion/behavioural-needs-of-autistic-australians-must-be-met-20151023-gkhark.html or https://a4.org.au/node/1071).

We see autistic people given drugs (perhaps indefinitely) without getting a functional/behavioural assessment. Few autistic people described as having "challenging behaviour" (which should be called "distressed behaviour" or "non-verbal communication in desperation") are even seen by a registered behavioural clinician. Few government agencies or disability service providers even know that registered behavioural clinicians even exist in Australia.

Another aspect of the problem is that even fewer registered clinicians practice in the areas of adolescent and adult behaviour support - most of the registered clinicians focus on early intervention because that is the only commercially viable market for them in Australia. And it is an extremely challenging area of practice.

I'm happy to talk to you more about this - and to put you in contact with others who can also talk about this.

My number is 0418 677 288

Bob Buckley

Convenor, Autism Aspergers Advocacy Australia (A4)

website: https://a4.org.au/

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.

On 7/08/2020 2:29 pm, Davidson, Lorna (DRC) wrote:

For Official Use Only

Dear Bob,

 

I was given your contact details by Peter Birch in our Engagement Branch, who I believe you spoke to concerning our upcoming Public Hearing 6.  I am the lawyer responsible for the preparations for that hearing, and I would be happy to talk to you about it, if you wish. 

 

Broadly, the focus of the hearing is on how psychotropic medication is used (perhaps mis-used or over-used) to respond to behaviours of concern that can be displayed by people with disability.  We will look at the regulatory regimes around the use of that medication as a type of chemical restraint, and we will also look at how alternative methods of behaviour support can be utilised to try to reduce reliance on psychotropic medication.

 

We have spoken to some potential witnesses about people with cognitive disability (particularly intellectual disability and autism) being most susceptible to being prescribed psychotropic medication in response to behaviours of concern.  If you have information or experience about the issues insofar as they relate particularly to people with autism, I would be very interested to hear that. In addition, if you know of anyone with autism (or parents or carers) who might wish to speak to us about their experiences of this type of medication and/or behaviour support, I would be happy to be put in touch with them.  However, the hearing is rapidly approaching so we do not have a huge amount of time to gather additional material, unfortunately.

 

Please let me know if you would like to speak by telephone and, if so, when might be a convenient time next week to do so.

 

Regards

Lorna Davidson

Team Leader, Office of the Solicitor Assisting

 

Royal Commission into Violence, Abuse, Neglect

and Exploitation of People with Disability

P: (+61) 02 7206 5264

M: 0436 856 225

E: lorna.davidson@royalcommission.gov.au