Our concerns with the Autism Ministry in South Australia

While we remain hopeful and ready to collaborate, the actions of this ministry have raised various concerns, noted below:

We are actively calling in our state premier Peter Malinauskas, and the recently appointed Minister for Autism, Emily Bourke. We are imploring you to engage with Actually Autistic voices. We are asking you to hear those voices and use those experiences to shape the policy and processes that will affect us and our children.
Our first area of concern is information availability and transparency:

As Autistic people we love well explained and accessible information. Thus far we have not been able to find any online resources or information about this ministry, who is involved beyond Mrs Bourke or the policies it will be developing. As Autsitic people in this state, we are the stakeholders of this ministry and therefore have a right to this information.

Our second area of concern is Actually Autistic inclusion in this ministry:

An event infographic that has been posted to the Instagram account of Emiliy Bourke, has a tiny footnote that states ‘organised in consultation with the autistic and autism community’ – However there is no transparency or information provided around who they have consulted. It would seem they have not actively consulted Actually Autistic people at all.

The Autism Advisory Board has very little Actually Autistic representation:

Mrs Bourke has noted in numerous interviews that she has developed an Autism Advisory Board to assist this ministry. This board however seems to have very little meaningful opportunity to contribute to the policies this ministry will develop. More concerningly, our research has led us to believe that the board consists of 16 people, including parents of Autistic children, education ministers, ‘key stakeholders’ and Autistic people. 50% have ‘experience with Autism’ – but how many of the 8 are Actually Autistic?

This is deeply troubling. How can you expect to create meaningful change for a community that you have not actively included in your discussions?

If this was a Minister for Women role and the government appointed a male with a supporting advisory board of hardly any women there would be significant push back. So why does being a stakeholder, or autism muma alone qualify you to be in such an influential role? It does not. 

We welcome collaboration with all within our community- that includes us!

The Autism Advisory Board has little meaningful impact:

It is our understanding that the board meets only 4-6 times per year and only for a duration of 90mins at a time. With few Actually Autistic people on this board we feel concerned that very little meaningful impact will be able to be made by this advisory board. 

We understand that one advisor discussed with Mrs Bourke the importance of supports for Autistc Adults, however thus far, they are focusing on ‘early intervention’.

Neurotypical parents being given the opportunity to directly engage with the Autism Minister Emily Bourke while Actually Autistic people are ignored and actively brushed off:

Our research has uncovered that a small group of autism mums were given the opportunity to visit Emily Bourke at Parliament House. By their own recount of the meeting they felt heard, welcomed and listened to. This led to them being given the opportunity to organise an event in July of this year (2022) at Parliament House to share their experiences as parents of Autistic children and ask our government to listen and act. 

This event occurred well before the ministry announcement in August. To our knowledge, this earlier event did not actively include any Actually Autistic voices. 

We believe (although are unable to confirm) that some of these ‘autism mumas’ have been appointed to positions on the Autism Advisory Board. 

In contrast, Actually Autistic voices reaching out directly to Mrs Bourke have either been completely ignored or have received very politely worded correspondence brushing them off. Since the announcement of the Autism ministry in August many Actually Autistic people have taken to social media to connect with the ministry, to share their insights and concerns or to share their knowledge. Again, many comments have been ignored or have only received generic empty responses.  

This is terrifying to us. Why is a ministry about and for us ignoring us?

Forum on Autism not including Actually Autistic people with diverse lived experiences:

This Sunday, September the 11th, Labor is holding an ‘Autistic & Autism Community Forum’ at the Convention Centre. Our state premier Peter Malinauskas, and the recently appointed Minister for Autism, Emily Bourke will be speaking along with the founder of the I CAN Network, Chris Varney. 

Excitedly, Chris Varney is Actually Autistic! The I CAN network does a lot to employ and support Actually Autitic people, children and their families. To our knowledge My Varney is based in Victoria. We welcome him as an advocate in this space and look forward to hearing him speak! (Not that we could get tickets! But there is reported to be an online streaming of the event).

In South Australia we know of many Actually Autistic people who are leaders in their fields; who are educators, researchers, academics and artists. We know of a few Adelaide based Autistic-led organisations that support Autistic people and their families. Many of these people come from minority groups and marginalised backgrounds. We feel that local Actually Autistic voces should have also been included in this event. 

We feel that in 2022 it is not good enough that such a significant event does not include the voice of an Indigenous Australian from the Autistic community. 

When Labor has such a focus on gender issues we feel that it is unacceptable that this event does not include a female or non-binary Actually Autistic speaker.

We feel that it is unacceptable that such an event does not include a voice of an Autistic adult from within the LGBTIQIA+ community. It is widely researched and reported that Actually Autistic people are far more likely to identify with the Queer community than our neurotypical counterparts- this is an important part of the Autistic experience. We would hope that any policy for Autistic people would include the voices of Queer people, fostering safe spaces for our diverse experiences.

We are actively calling in our state premier Peter Malinauskas, and the recently appointed Minister for Autism, Emily Bourke to include the voices of Actually Autistic people with diverse lived experiences.

Priority access to attend Forum on Autism given to stakeholders and ‘autism mumas’ while Actually Autistic people are unable to attend:

This Sunday, September the 11th, Labor is holding an ‘Autistic & Autism Community Forum’ at the Convention Centre. 

We first saw the tickets for this event advertised in a single post on the instagram of Mrs Bourke, posted on the 30th of August. It was by random happenstance that we came across this post to hear of this event. Hopeful for a ministry dedicated to us, we hopped online to book tickets to hear more about it all. 

Unfortunately they were all booked out. Our research has uncovered that approximately 300 tickets were offered. Priority access to those tickets were offered to ministry ‘stakeholders’, ‘autism mumas’ and other organistion members. 

Actually Autistic people have not been able to access tickets to this event as all the tickets have been given to the ‘autism mummas’ and orgaisations first. We have counted (in local online forums) approximately 100 local Actually Autistic people who would have liked to attend but will be not able to. 

We were told by the office of Mrs Bourke that the event has been designed to not be overwhelming. Who designed this event? Because thus far, it has been easy to show that the Autistc experience has not been considered. 300 people for some of us could be overwhelming in anycase and yet many of us have been actively communicating with Mrs Bourke and her office that we would like to attend. This directly impacts us.

Actually Autistic?

We have been given the opportunity to formally submit our survey insights and findings to the assistant Minister for Autism, Emily Bourke. We will be submitting our findings near the end of October 2022. We hope the findings help guide this ministry.

We are inviting Actually Autistic people, anywhere in Australia, to contribute to the surveys on this website.

Thus far, there has been limited consultation with Actually Autistic people regarding this ministry. We are attempting to address this by creating our own survey and submitting our findings to the ministry. They have said they will consider what we share. We hope Actually Autistic voices will be used to shape this ministry.

Each survey is anonymous and should take approximately five minutes, depending on how much detail you choose to include.

Our key survey relates directly to the ministry, if you only have the spoons to complete one please complete this one!

The below three survey each have a specific focus. They are focusing on areas we feel there is a localised knowledge gap. We hope the insights gathered from these enrich our key survey findings: