I lay awake, contemplating and thinking about the future. Strains and strands of thought about the autism community and the autistic community or should I say communities, run through my head, causing wonderment of what the future will be. Will it be bright or bleak. Will it be progress or stagnation.
One strand is reflection and thankfulness for being able to be a part of the Autism CRC Research Academy in Brisbane Australia. A week of talking research facts, information, methods, design etc. But most of all discovering that in reality there are researchers that want to see us actually autistic people as more than just subjects or participants. More than just something interesting to study.
The Autism CRC is a cooperative research group in Australia that is funded by government and partners. They have partners that are universities, peak bodies, government departments and individuals. The partners all must sign on to the Autism CRC’s ethical guidelines and ideals. This is actually a bold step forward. I great opportunity to change the future of Autism Research for the better.
An opportunity to move on from research that is cause and cure focused, research that’s focused on change and compliance, a move on from research that asks how can we intervene to make the autistic to appear, seem, or act more like a neurotypical person.
An opportunity in fact to move to research that asks how can we ensure the best outcomes for quality of life for autistic people. What interventions actually make a difference for their life, rather than the lives of those around them. What is the effect of the interventions on the wellbeing of the autistic person. What is it that we do that improves the opportunities for autistics to be successful in achieving all they dream and desire, whether it be in self advocacy, employment, relationships or whatever. Essentially what are the things we do to support autistics to have the same options and possible outcomes that neurotypicals expect for themselves?
You may wonder why I see this this way? Surely this is just another research group and cure and cause will end up the reality because that’s where it’s at, that’s where the narrative is at, that’s where the huge voice of Autism Speaks and the other big peaks are speaking.
The cooperative research part, whilst referring in name to the cooperation between research groups and partners is taken far wider by Autism CRC.
Far wider indeed!
The passionately speak of peer research, co-production, co-writing, and co-presenting of research and research finding and outcomes.
What this means, is that they seek to have across all research projects, across the timeline of those projects at each and every stage the involvement of Actually Autistic people. People with lived experience not just participating as participants, but as genuine co-researchers.
This is a massive step forward in my view. And they are putting their money where their mouth is. They have just funded and paid for 14 actually autistics to come to Brisbane for a week and share experiences, learn from each other and become members of the inaugural Autism CRC Research Academy.
This is in my view, Autism Acceptance. It really is. To sit as part of a groups and be truly valued for my lived experience was a singularly unique experience.
This is a game changer.
The more I think about this the more I really excited I become.
Protest and rhetoric is important and as the below video shows can achieve results.
But real change of policies, perceptions and attitude does come from research because it comes from evidence based practice. And the more lived experience can be involved in, inform and partnership with research the more that evidence based practice will move to a model of acceptance.
It is acceptance that drives change. Not awareness. It is acceptance that promotes real outcomes and not awareness.
It’s easy to go and walk somewhere and donate a few bucks, that’s awareness.
It’s much harder indeed, to do the hard yards of changing the way you do things to accept, accommodate and ensure that the lived experience of actually autistic people is considered and accounted for in the situations in which you have influence.
Yes in this strand of contemplation I think that the future is actually bright. Brighter than perhaps it has been since I don’t know when.
I am hanging on for this ride, it just might be a bit of a wild one…