The Difference Between the Autism Community and the Autistic Community6 min read

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!

4 Comments

  1. Great article, I agree com­pletely with you.

  2. 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!

    1. Author

      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.


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