R is for Research
In a series of post about autism and surrounding issues, it would be virtually impossible to not have a post focused on research. To some research is their livelihood, and to others, it can be virtually a swear or cuss word. Research can be used as to harm and to help. It can inform future practices, it can and does provide technicians, clinicians, doctors and the like with an evidence base for what they do.
Research it is that has dispelled the hateful and hurtful myth of vaccines causing autism.
Research it is that has fuelled the cure culture of organisations like Autism $peaks.
It is a double edged sword as it were.
Across the paged of autism history, research has been predominantly been done to or on autistic people. Focus has been largely on what the cause of autism is and how to cure it. It has been the domain of non-autistic researchers as the prominent actors in this quest for knowledge and understanding.
Massive amounts of money have been spent on this endeavour, yet it has neglected to include as co-actors in this quest the very people that can provide the greatest insight: Autistic Individuals.
Research has also predominantly been acted upon autistic children. The idea of research into autism across the lifespan has seemed to be not even considered for the most part.
As an autistic I have participated and been asked to participate as a subject in research on a number of occasions. I have consented on occasion, and generally been disappointed. The reality has been that my input and knowledge has not really been wanted outside of the strict boundaries of surveys and questionnaires. Additionally, it has been quite the task to actually get information back from the researchers of what they have found.
Needless to say, for many autistics, research into autism can give them a bad feeling. A feeling akin to ‘here we go again’, and ‘here comes the latest cause or miracle cure’ for me being me.
It doesn’t have to be this way.
But, it really doesn’t have to be this way. There is, in fact, a new model of research beginning to gain some traction. It’s a very different approach to autism research. It is, dare I say it, revolutionary.
It’s called co-production. It is being championed in my country of Australia by AutismCRC. The idea is that research is conducted collaboratively by 
allistic and autistic people together. That the research is not just done on autistics but done by autistics. Those autistics are involved in every step of the process as key team members of the research team.
Not only this but this group are so serious about this that they are putting action behind the words. It is not just rhetoric. It is, in fact, a passionate stance by the key people involved in the organisation. AutismCRC is committed to research that enhances the lives of autistic people across the lifecycle.
Yes, research into more than just kids, and more than just a cure, a treatment, a cause. Believe it or not!
So committed to this way forward are AutismCRC that last October I an 13 other autistics gathered together for a week in Brisbane, Australia for a Research Academy. We gathered to learn some of the ins and outs of research, the models, the methodologies the ethics. We laughed, we cried, we learned and we connected. Most importantly we discovered that we were not merely participants or subjects but colleagues.
So committed to this way forward are AutismCRC that when the funding committee considered funding research projects that proposals that are for co-produced research will be looked upon preferentially to those that don’t.
During our week together we were privileged to be present for the official welcoming of ASAN as a key partner with AutismCRC. If ASAN is onboard as a key autistic advocacy group then clearly this is not to be simply dismissed.
With all this being said, there is one very special key ingredient that AutismCRC and other groups that pursue co-produced research have in common. It is a simple ingredient that has been missing and the worlds knowledge, understanding and insight into autism and autistic people is the poorer for it. That ingredient is the valuing of autistic voices and their lived experience.
R is for Research.
I confess I have had negative reactions to research and autism. I have even made a meme or two about it in the past, but, I throw my support behind the co-produced research, it will have a key role to play in the enhancement of autistic quality of life, access to needed support and services and as a consequence better quality of life across the life-span.
I am sure there are similar organisations in other parts of the world, I can only really speak of this one. Yes, I am speaking in support of them, because I experienced their passion and dedication to the valuing of autistic voices and the valuing of that lived experience and insight about autism and being autistic that only an autistic can provide.
Things are moving forward and co-produced research will be what provides real insight and real change and real support to autistics because it will inform practice to enhance autistic lives.
It’s not just talking and bluff, with key partners such as ASAN and Dr. Wenn Lawson with AutismCRC the proof is in the pudding.
R is for Research…
It’s changing folks and for the better.
Well said Richard! I agree with your applause of the AutismCRC ‘s initiative in promoting the involvement of adult autistics in research endeavours… a fresh beginning in an era of greater participation. There is so much to do to further the place of autism within the Neurotypical world and to do this we need the partnership of both autistic and non-autistic individuals… an equal partnership that supports and enacts Nothing About Us Without Us at all levels of the research process.
Thanks. Yes. As they say together we do better….
It does not help that there are scientists who think that the ONLY evidence that matters is peer-reviewed evidence, and that any other forms of evidence are no evidence at all. It is true that peer-reviewed evidence can be some of the best evidence there is, but it is important to keep in mind that peer review is like an inspection sticker on a shirt or sweater or food; that is exactly how scientists put it. When you put it that way, you realize there can be some pretty crappy or poorly designed shirts or substandard or questionable food that have an inspection sticker on them, even though some of the really bad ones are filtered out. However, there are also well-made shirts that don’t have an inspection sticker on them, like one a person might sew at home, or else a good hand-knit sweater that also does not have a sticker. Same with food one’s parents make at thanksgiving, or homemade goods; those don’t have an inspection sticker either.
It is the same with evidence, and the peer-review; peer review keeps lots of shoddy evidence or false claims out, but also lets several shoddy and occasionally even fraudulent claims in, particularly if those claims align with a prejudice that is widely supported within the scientific community; thankfully frauds are rare, but still. However, there is also good quality evidence that is not peer-reviewed, such as a survey’s equivalent of accounts of ABA and other abusive procedures done to autistic people causing PTSD, not to mention multiple reports of various sensory phenomena, autistic burnout, and other things associated with autism, that would probably have been collected into a survey at the very least and confirmed with peer-reviewed study long ago (or longer ago, in the case of things like that that have been backed by peer review) if the peer-review process itself were not haunted by prejudices within the scientific community.
Keep in mind, too, that it is no coincidence that we did not see studies on things like transgender acceptance or the effects of sexism, homophobia, and racism until social justice movements made progress towards reducing these prejudices within the wider community.