Often when autistic people, their family members, scientists who research autism, therapists, and anybody for whom autism is a part of their lives are talked about, they are referred to as a community. A lot of the time autism organizations and facilities that are lead by all or at least mostly non-autistics will specifically use the term “Autism Community.”
When they talk about the impact of their work, they will say that they are looking to “make a positive impact on the Autism Community”– which most assume includes autistic people; however, it is often the case that it either does not include us or it puts everyone else before the autistics because they’re supposedly helping us.
When you refer to the Autistic Community, there is no ambiguity there. We all know that means exclusively autistic people. Some may say that it is selfish to only consider autistic people in the autism rights equation and it is more inclusive and holistic to include the neurotypicals who are supposed to be our allies. After all, we need them to help us gain parity, right?
Well, I’m afraid it’s not that simple.
In a previous article, I mentioned how non-autistics tend to talk over us when they are given a platform to speak about autism. When you talk about the “Autism Community,” you are including the people who do not have lived experience of autism who will speak on our behalves as if they are more qualified to understand and qualify what autism means and how it feels than we are.
I believe that one major factor that contributes to why the general public seems to be more willing to listen to non-autistic “professionals” is because it is assumed that because those people are doctors and often have a ton of letters next to their names, that they are automatically smarter than the average human being.
There are plenty of autistic researchers and scientists who work in the same or similar fields to these people, but autistic professionals are far outnumbered in how much of a platform they are given and just how many of them there are in comparison. If you are autistic and your name is not Temple Grandin, Kerry Magro, or Stephen Shore, then good luck getting butts in seats at your presentations.
That’s not to say those people are terrible, (though I do disagree with a lot of what those three people say and think, especially Temple), but it is to say that there is a small pool of over-referenced autistic people as self-advocates at major autism-related events that were staffed by non-autistics in the first place.
These autistic “celebrities” also seem to be the only autistic people that the masses will listen to, as they seem to confirm the biases and self-fulfilling prophecies of the non-autistic world. The Autistic Dark Web also does this, and specifically does it to exploit the biases of non-autistics. That’s a whole other can of worms though.
There’s the saying, “by autistics, for autistics” that comes with events such as Autreat, organizations such as The Autistic Self-Advocacy Network or The Aspergian, and books such as Loud Hands: Autistic People Speaking.
When I go to the websites and look at the contents of things that are by and for autistic people versus things that are by non-autistics and supposedly for autistics (but are really for parents and caregivers of autistic people), I notice a major difference in the priorities and language. It really does feel like two completely different worlds.
When I research local autism organizations (for the state of Georgia, there are many) and look at what symbols they use, what kinds of events they have, and the people in charge, I notice some common trends.
I tend to see puzzle pieces everywhere, which autistic people mostly do not like as a symbol for autism, the leadership being parents of autistic people, scientists, researchers, and/or practitioners of early interventions, an emphasis on treatment and early intervention, walks that they do for autism to raise money, and resources that seem to mainly speak to the parents rather than actual autistics.
There will maybe be a little something on self-advocacy and the organization may occasionally have self-advocacy panels and events, but it feels like the stuff that is truly for autistic people comes second, especially autistic adults. To me, this is the “Autism Community,” and while it certainly isn’t all bad, it does not feel like it is really for me.
That’s fine though, these things don’t have to be for me, for there are things built by and for people like me that speak to and empower me far more than the autism community does.
On the flip side, when I research autism organizations and events that are founded by autistics (such as this very website), it truly feels like autistic people are put at the forefront. I see institutions and ideas of ableism being nipped right in the bud, I see all or mostly autistic leadership, I see resources that are SPECIFICALLY for and tailored to autistic people, and overall, I see true empowerment.
To me, this is the Autistic Community, and I love it. The best way to empower an autistic person is through the work and help of fellow autistic people. As I mentioned in my last article, this goes for all groups. Nobody understands you quite like your own kind.
I would say that this somewhat applies to non-marginalized groups, too, and specifically men. There’s a very specific kind of feeling and aura that comes with being around just other men, as there are things about me that pertain to my gender that I think only other men would truly understand. The point is, we find solidarity in spaces that are designated for other people who have things in common with us.
The real key takeaway factor from this is that like race, sex, gender, sexual orientation, and religion, among other things, autism and disability is very much a social identity. The unfortunate caveat to this all is that society at large seems to still not understand or agree with this.
I think this is why the “Autism Community” and autism-related things made by neurotypicals that speak more to non-autistic people than autistic people tend to get more attention and traction. It’s because that is what non-autistic people want to see and want to hear because it reinforces their default mindset about autism and disability that they are taught from a very young age and are systemically conditioned to believe.
This is partially why neurotypicals (and sometimes autistic people who were unaware of the Autistic Community) tend to be so taken aback when they are called out for their implicit bias of what autism looks like. They think the Neurodiversity Movement is a radical fringe movement because it is given so little attention.
In order for the space to be opened for us autistic people to be the leaders of our own narrative and have a real stronghold on autism policies, there needs to be a paradigm shift for neurotypicals to give us the room and give up their elevated platforms for us to take for ourselves. There needs to be more education of autism and what it really is.
This will require us working with some neurotypicals on occasion, who also need to be better allies who do not at all speak over or gatekeep for which autistic people deserve to be heard. I am not entirely sure how we will get there as a community, for I do not hold all the answers and solutions, but I do know that it is something that needs to be done. Nothing about us without us!
Great article, I agree completely with you.
What can I do as educational Assistant who works with children who are diagnosed as Autistic? Some speak their beautiful whalish song languages I love echoing… some love tickling hugs…. and I know through you all and much more research, how each person is such an individual and sooo diverse! I want to reach their hearts and connect at their levels. what do you recommend? Not in a strict, rigid way to alter their true self but in a supportive manner to understand how they are feeling at the moment….. I don’t want to upset them or harm them in anyway!
I recommend listening to autistic adults. We are more than happy to help and have been there! But also, if they are able to vocalize their feelings (verbally or non-verbally), then listen to your kids! Never speak over them or for them unless they ask you to.