Are we getting in our own way?

I've gone back and forth in my head about whether I should write and publish this article and I'm just going to start writing it, then see whether I feel brave and resilient enough to deal with any backlash when it's finished. I shouldn't have to worry about backlash, and about the effect that voicing an opinion will have on my prospective career options, but that is exactly the point of this piece.


Generally speaking, the autistic community is supportive and inclusive of its own members, and fiercely protective of our neurotype (and other types of neurodivergence) but I think we also get in our own way at times. This piece is specifically about how we deal with autism research and the language used by the medical community.


Autism, as with any other medical condition, is diagnosed based on criteria that are, by nature, about our “lack” of certain traits relative to the majority neurotype. We could invert the criteria, and diagnose Allistic Spectrum Condition instead of ASD, but it would still be based on things that aren't present in the non-diagnosed community. This doesn't really help anyone, even if it is fun to play around with the diagnostic criteria for Allistic Spectrum “Disorder”.


I've seen comments about how we should be diagnosed on our strengths, not the things we struggle with. A lovely sentiment, but how does that actually work? We have such diversity in our profiles of strengths and weaknesses that the criteria list would be huge, and some of us would not get a diagnosis because we lack some of those strengths (some of us already don't quite scrape past the deficit-based diagnostic criteria due to coping and masking strategies we've developed).


I'm all for promoting the strengths of autistic people, and changing the myths and misconceptions that some people have about us autistics. It's why I want to get in front of people and educate them about autism and neurodiversity. However, I am still realistic about the fact that autistic people do face challenges unique to our neurology and we do have traits that could be seen as deficits (just as every human has weaknesses). I'm also realistic about the fact that the language used in research about our neurotype is based in medicine.


The problem here is that medical language is clinical by nature, it's detached from the person, and it just doesn't feel very nice to be described as “lacking empathy” especially when the reverse is more often the case. I am not disputing that the diagnostic criteria need to change, in fact I think it needs a fairly urgent overhaul with direct input from autistic people.*


And herein lies the rub: researchers and clinicians – the people in the position to enable these advances are being deterred by the reactions from some of autistic community. There are some vitriolic reactions to the language used and potential implications in research and studies that can further our understanding of autism and ideally will lead to improving the lives of all autistic people. The backlash is getting to the point where researchers are leaving the field, and those coming into the field don't want to be involved in the powder-keg.  There's a really good discussion of this phenomenon and the issues at Spectrum News.


I personally agree that some autism research has some limited scope for actually being useful in improving the lives of autistic people, and some skirts very close to the edge of eugenic applications, but that's slightly tangential to the point of this article. We are getting in our own way by heckling, interrupting, doxxing and otherwise campaigning very vocally against a lot of autism research and scaring the medical community away from working with us.


Yes, we absolutely need to stand up for the rights and acceptance of autistic people, but we need to be respectful of the viewpoints of the people we are battling against – actually we need to stop seeing it as a battle and attempt to maintain an open dialogue. Interrupting presentations at conferences, and publishing the personal details of researchers online (with the implied encouragement to harass) is disrespectful and unhelpful. It sets the progress of the neurodiversity movement back and makes enemies.

We must continue to push for transparency in research studies, and to question the validity and necessity of research that doesn't have any meaningful way of improving the lives of autistic people. We need to start changing the direction of research and we can best do this when we are involved with it. Neurodivergent people often ask the best questions, provide different angles and approaches, and can provide unique insight into neurodiversity research, so we need to be involved.


How are we supposed to inform and guide research if we can't show that we are capable of an open, respectful conversation? Of course we may feel disrespected by the language used by the medical profession to discuss autism, and by the terms used in research, but in the name of progress we must put those feelings to one side to enable the dialogue to happen. We must consider the impact of our actions on people who are working (for the most part) to improve our lives through better understanding of what autism really is, in a medical sense, how it works, and how we can best overcome some of the major challenges. We know how it feels to be ignored, to be shouted at, to be bullied and harassed, and we need to make sure we don't stoop to this level of behaviour and make others feel like that. Nobody wins if we do that.


Sadly, I'm also seeing (and experiencing) this from within the autistic community. Some of the louder voices are drowning out the voices of others, and making us feel like we can't speak up for fear of being labelled as ableist. I feel unwelcome for my communication needs/preferences, because my neurodivergence makes me ableist in the eyes of my own community. I struggle with mis-spellings and unstructured text, it absolutely does impact my ability to understand and communicate. No, I don't go around correcting spelling or grammar online, but I do have limit my exposure to it because the cognitive effort used is similar to holding a conversation about something inane with a stranger (actually more).

The image to the right sums it up (image text: As autistic people we get so much shit from others.  We don't need it from inside the community too.) Credit: Autistic and Living The Dream.


Please, let's keep all dialogue open and respectful, because if we can pull together as a community and advocate for the needs of ALL autistic people, diverse as they are, we can make the changes we need to see.


*86% of autistic people have some level or type of movement or motor control difficulty, but this isn't part of the diagnostic criteria. In my opinion it really should be included.


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