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.
But no.
Autism CRC stands apart. Deliberately and determinedly so.
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…
Yes Richard! It is a new era of hope and I , like you, feel that the Academy is the beginning. Hopefully understandings we reveal to the non autistic research community, and also to autistic researchers will actually be taken on board and facilitate a change in how things are done.
How the autistic community is accommodated regarding the “Vision of the Future” and the processes of consultation and communication with us…the autistic co researchers, co producers and co writers.
My personal experience over the past 18 months or so has been a positive one working with the researchers who initiated and brought into being the Academy.
So I too am full of hope this exciting venture/adventure will continue to extend the cooperation, acknowledgement, acceptance and vision that includes those from across the entire autism spectrum.
As you say much has been done to address the concerns of those not on the spectrum and done without much ( if many cases without any) consultation with autistic people. Assumptions made upon observations of ( predominately very young children) , observations of behaviour interpreted through the Neurotypical lens… which by definition cannot know how autistics perceive and relate to their existential reality.
Non- autistic people will gain much through work done co operatively. The choice though will lie with them. With an understanding of how autistics actually experience life there is also the possibility for mainstream people to adapt to the idiosyncratic nature of people on the spectrum… flexibility to enter a “foreign” mode of communicating, appreciating and receiving … the gift of engaging in another world so to speak.
Here Here
not too sure if research is the way forwards and on your point about awareness I THINK there needs to be more awareness you say that research is the the way forwards well look at autism speaks they do research and we all know how utterly unacceptable that it
I think that without awarness there wont be acceptance
it was like that personally for me untill I was aware of my aspergers and all what that meant I couldnt accept it but because I am fully awareness of my aspergers I fully accept it
Also because of my awareness I was able to get support too I just dont think I would of got that support if I wasnt aware of aspergers
I have seen this awareness arguement so many times and personally I think that instead of all this BS there should be an acceptance that awarness of aspergers is not such a bad thing I will only be making this comment as these are my own views and I dont want to get drawn into a debate so i wish the ppl good luck with this socalled “research” but I will NEVER EVER take part IN any of it
Interesting point Graham but not all research is the same. there is research that helps with acceptance. Research that shows things that we are good at for example, or ways that will help us. This can then become the evidence based practice that educators are required to use to teach us.
It is disheartening to hear you be so negative about the future. If we didn’t have research we would not have many of the things we use from day to day. we wouldn’t have the medicines that keep us well.
The thing with awareness is that it’s just a word. Anyone can be autism aware but it requires nothing. Acceptance encompasses awareness but the reverse is not true.
well you have also made some”interesting” comments for research and well isnt it any wonder why I am disheartend this reply is going to be my ONLY one because well you have your own views (which by the way is actually ok with me) and I have my own and obviously they clash so all I am going to say is I will agree to disagree with you and leave it at that richard ok I wish you success but goodbye okay
ps awarness isnt just a word and as for acceptance I DO accept that I have aspergers OKAY