I’m not writing this post because I particularly want to apportion blame to either researchers or neurodiversity advocates, or to fight over old grievances, as an end in itself. Mostly, I hope we can move forwards into a future where researchers and autistic advocates see one another as collaborators, as allies who are both fundamentally interested in the same goals – in particular, enhancing quality of life for autistic people across all the whole breadth of the multidimensionally diverse autism constellation. I would like there to there to be reconciliation or rapprochement between the neurodiversity advocacy movement and the research community.
Unfortunately, although I am heartened to see lots of progress occurring in the research community, we’re not there yet. The reality I see in neurodivergent communities today is that there is a great deal of skepticism about research. While some autistic people have called for advocates to pay greater attention or respect to empirical research findings, many others continue to fear that researchers don’t have their best interests at heart.
Unfortunately, most autistic people aren’t as closely tied into the research world as I am and therefore can’t see much progress happening in the research world. That doesn’t mean there isn’t progress. For example, John Robison writes about the way researchers have listened to his ideas and insights. As an autistic person who does autism research around one of the busiest autism research centres in the world, I also see progress. I’ve helped to co-organize summits on neurodiversity at the MIND Institute, a research centre which recently changed its mission to finally give up the ambition of curing autism. I’m happy that the International Society for Autism Research (INSAR) has established a new committee of autistic autism researchers, which I co-chair. The new Autism Intervention Research Network on Physical Health (AIR-P) has recruited a review board of autistic researchers. These sorts of initiatives not only directly give autistic people a larger role in autism research, but they are evidence of an ongoing cultural shift that I’m delighted to see.
Unfortunately, not all autistic people can see this progress as easily as I can. Someone who is struggling every day trying to find and keep jobs, trying to prevail through social isolation, trying to manage their sensory distress, and striving to cope with mental health challenges may not be interested in or aware of a new committee here, a new event there, or a subtle change of mission somewhere else. They might, however, know about the way that researchers have accused autistic people of lacking empathy. They might know about past unethical experiments performed on people with developmental disabilities from institutions. They might resent the way researchers still call autism a “disorder” characterized by “deficits.” They might know about the way intervention research focuses on normalizing autistic people by making us appear more neurotypical instead of improving our quality of life.
Even if change is happening, it isn’t always apparent to people in our communities, because most of them aren’t part of that change. The research world and the community are still very far apart. They are separate silos, and while some people do move back and forth between these worlds, there’s not much interaction.
When people can’t see the progress, but can see everything that has been wrong about autism research in the past (and that, to a considerable degree, remains wrong in the present), it is hardly surprising that they wouldn’t trust researchers. It is hardly surprising that they would see vast swathes of autism research as at best unhelpful, if not actively threatening. In much of the autistic community, the lack of confidence in researchers has reached a crisis point. As researchers studying a particular population, it’s not sustainable for us to lack the confidence of that population – to be viewed with distrust or as outright opponents by the most active advocates and leaders from that population.
For a process of reconciliation to work, researchers need, as a community, to recognize that the autistic community has justified grievances against autism research, to apologize for those grievances, and to commit to meaningful changes to regain the community’s confidence.
If, as researchers, we want to show autistic people that we are willing to listen to autistic voices and change our practices, we need to do more to show it. We need to do more to reach out to people in our local communities and include them in our research not as subjects but as collaborators and co-researchers who can have valuable insights about what researchers could study, how they can study it, and what they can do with the results. We need to change the language that we use so that we aren’t offending members of the community every time we open our mouths.
I also think we need to have discussions on controversial subjects like behaviour intervention so that we can explore why researchers’ and advocates’ views differ and what we can learn from these disagreements. I’ve only recently started to see evidence that researchers who study behaviour interventions are aware of autistic people’s critiques of ABA, and while I’m glad to see that some are now becoming aware and responding, it is pretty problematic that it has taken decades for us to get this far. People have literally been saying that some of these interventions can be traumatic, and the research world and autistic community have been so separated that it took decades for that message to register. Both researchers and advocates can have valuable insights, and it is always disappointing to me as an autistic researcher when I see one group unaware of the insights offered by the other. Regular mutual engagement, dialogue, and collaboration seem vitally necessary in order to bring the research and advocacy worlds together.
But I do want to assure autistic advocates that even though progress towards these sorts of changes is slow and sometimes difficult to see, it is occurring. I’m very optimistic about the future right now. We mustn’t dismiss neurotypical autism researchers just because we haven’t always seen eye-to-eye in the past. Even if we don’t always agree with their findings, we shouldn’t simply ignore their research – we might disagree with the ways that they design studies or interpret results, but if so, let’s say so. Besides, there’s lots of people already doing work that I think is pretty relevant to the needs of our community. The slow pace of change in academia can be frustrating, but change is definitely happening.
We also mustn’t forget that we aren’t the only stakeholders in the autism world. For example, there are communities of parents of autistic individuals who don’t speak for themselves, and not all of them agree with the neurodiversity advocacy movement. For that matter, not all autistic people agree with the neurodiversity movement – just look at the writings of Thomas Clements, Twilah Hiari, and Jonathan Mitchell. I have high hopes that we can find common ground with these groups as well, but it’s not always easy for researchers to figure out who they should listen to when different groups of people are telling them different things.
It’s difficult to be patient when so many of us are living on the margins and when we desperately need researchers to be our allies in seeking the sorts of meaningful changes that will support us, but we are getting there.