Autistic lived experience and a Minister for Autism in South Australia

In August this year (2022) the South Australian Labor government announced the new appointment of a Minister for Autism, Emily Bourke. At first glance, as Autistic people, we were cautiously excited. Upon further research, the few sparks of excitement we did have dissolved into concern.

However, we remain hopeful that the intent of the newly created ministry is to create positive and lasting change to the lived experiences of Autistic people in South Australia. We hope they are actively deepening their knowledge on the lived experiences of Autistic people. We hope this knowledge will contribute to positive policy changes that will support Actually Autistic people.

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: 

We are calling on the South Australian Labour government, it’s premier Peter Malinauskas, and the recently appointed Minister for Autism, Emily Bourke to:
  • Provide clarity and transparency around who is on their Autism Advisory board.
  • Create a single accessible point of information on this ministry, its desired outcomes, the people involved and its policies.
  • Actively engage Autistic Aboriginal Australians and their communities and  Autistic Torres Strait Islander peoples and their communities in the Autism Advisory board and future policy development.
  • Actively engage Autistic People of Colour and their communities in the Autism Advisory board and future policy development.
  • Actively engage the LGBTIQA+ Autistic community in the Autism Advisory board and the development of future policies.
  • Actively engage the many Autistic-led, local organisations in the Autism Advisory board and future policy developments.
  • Create meaningful opportunities for Actually Autistic people to share our lived experiences and knowledge to help shape policy developments that will affect Autistic people.
  • Engage/employ Actually Autistic people in leadership roles within this ministry.
  • Engage/employ Actually Autistic people in organisational and administrative roles within this ministry.
  • Reassess their focus on ‘early intervention’. We implore the Autism Minister to consult with the Actually Autistic community on this issue. We align with Reframing Autism’s statement on early intervention, accessible here.
  • We understand that a handful of neurotypical mothers were afforded an audience at Parliament House with the Minister for Autism, Emily Bourke. This audience led to this group of people being offered the opportunity to organise an event at Parliament house to speak on their experiences as parents of Autistic children. Actually Autistic people were not actively included in this event. This event was held in July 2022. We understand this has been a significant resource for the minister for Autism. While we celebrate this, we feel saddened that Autistic voices, thus far, have not been included in this vital conversation. As Actually Autistic people we would like to be afforded the same opportunity. We are calling on the minister for Autism, Emily Bourke, to offer a face-to-face meeting with Actually Autistic people from South Australia, including those actively engaged in work in Autistic-led organisations or activism. This group of ‘autism mumas’ have noted it was a very meaningful and positive meeting. We too, would like to be heard, respected, listened to and welcomed to be an active part of this conversation and this nation’s first Autism ministry.
Actions we have taken:
  • Creating this online resource which outlines our concerns and concerns shared by numerous Actually Autistic people.
  • Created a survey. Once the results are collated we will submit the findings to the Minister for Autism in South Australia.
  • Via email, we shared our online resource with our state premier and the minister for Autism.
  • Shared our survey and online resources in online local Autistic groups and our own social media platforms. This has included tagging our state premier and the minister for Autism.
What actions could you take if you are Actually Autistic?
  • Post about this ministry and the concerns you may have.
  • Share our online resource. Write to our state premier and the minister for Autism.
  • Write to other ministers. Complete our survey.
  • Share the survey among other online Actually Autistic groups you may be a part of.
  • Reach out to us to collaborate!
Further actions we will take:
  • We will reach out to local Autistic-led organisation to share and seek opportunities to collaborate and together petition our government.
  • Raise awareness by approaching media with our concerns.
  • Continue petitioning our state premier and the minister for Autism until they address our concerns.
  • Reach out to other politicians, for example our local Greens minister and share our concerns with them.
What actions could you take if you are an ally?
  • Please share and repost our content, or any content from Actually Autistic people regarding this.
  • If you have any connections to anyone of influence or power, ie. politicians or media, please reach out to them and share our concerns

We are Angelique Joy & Georgia Joy

Aj is a neuroqueer visual artist. Their creative research has investigated the interbodily experiences of Autistic people and how they mediate experiences of the world through technology, creating positive alternate social experiences (cyborg). 

G is an AuDHD’er. They are in their second year at uni, studying archeology and material culture. They are particularly interested in decolonising and queering practices in cultural institutions such as museums and galleries.