Autistic community issues: “Gatekeeping words” edition

*Update: The autism ask blog has posted a well-worded apology after taking the time to consider many of our thoughts and feelings on the matter.

Tumblr folks: This is an expanded version of my other post.

There has been (another) recent kerfluffle regarding language (this instance is on Tumblr). Specifically, people are gatekeeping the term “special interest”. An autistic person decided that an ADHD blogger who manages a blog for ADHDers was incorrectly using the term special interest due to her being non-autistic. Despite her providing evidence that it is not autism-exclusive, the person went to an autism ask blog. There, they were told the term is autism-exclusive. The autism ask blog is wrong.

With that context: I am an autistic person with ADHD, and I have a request. Could you stop telling me that I have to use two different words to describe the same experience I have that I have no idea which “diagnosis” it comes from? (By the way, brains are not partitioned like that, so my neurology is affected by both, sometimes in very interchangeable ways that you don’t know which one is which!)

And the autistic community, as one blogger​ points out here– has a pretty long history, and we haven’t been this exclusionary with words from the start. I have put together and managed submissions for some of that history at ourautistichistory​ (Autistic History Month). And some of it is probably lost as domain names expired or the list servs went defunct. But the moderator of the actuallyadhd​ blog, who has ADHD, has been involved with list servs and later platforms of the autistic community since 1994. She is an autistic cousin, which is a decades-old term that refers to someone “who is not NT, is not quite autistic, but is recognizably “autistic-like” particularly in terms of communication and social characteristics.”

To ignore that fact, along with the first blogger’s note that these kinds of words have not been considered exclusive to the autistic community from the start – which is roughly three decades ago – is negligent. A community should know its history, and we need to know our history to work for change. 

And it tells people that we are not a community that welcomes people unless they share our specific neurotype. It tells many people who are wondering if they are autistic that we are a community who will not welcome them. That may make them afraid to approach us, or learn more about autistic community and autistic culture. It tells people we are a community who is willing to gatekeep, and that is not what I want people to think of the community I love and fight for.

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Expecting ways of communicating to define an Autistic person

Feedback is welcomed, but please see the bottom of the post first.*

Autistics have largely argued that no one should assume we are alike. Our differences include communication styles, external presentations, or supports needed. Being human like anyone else, we also differ in goals, interests, and hobbies. We’re all still Autistic, but we need others to stop basing all their assumptions on that. In particular, people make assumptions from communication styles. Some of us communicate with significant support, little support, or somewhere in between. Some of us use assistive technology and some of us don’t. Some of us don’t have access to language most people understand. And defining us based on communication style we use (or off any one or two traits) is unhelpful.

Yet it’s not just an issue of non-autistic people making snap judgments. Some Autistics who talk neurodiversity on the Internet also like to ascribe certain Autistic traits to select narratives. One such narrative is that those of us who identify ourselves as speaking Autistics tend to be non-visibly autistic and have few direct support needs. Often, the narrative includes the idea that we’ve learned how read non-autistic people’s behavior or at least mimic it. Many posts intended to be helpful for community members are written through this lens. There are Autistic people who fit this narrative, and there is nothing wrong with that. The issue occurs when the narrative doesn’t make room for other people’s stories.

I identify myself as a mostly-speaking Autistic, and I don’t fit well into that narrative. My communication style is assumed to be “expressive” because I talk out loud most of the time. I’ve written about it before in the blog post “You call me expressive and miss the struggle it takes.” There, I wrote about my personal relationship with speech, and the incorrect inference someone made about me. They decided that I couldn’t have many support needs or real struggles with communication out loud.

But I do have a number of direct support needs, somewhere between “needs little to no direct support” and “has high direct support needs.” My mother, who lives several states away, attempts to provide what support she can, but I honestly need more in-person help. I am able to take care of my cat, but taking care of my own needs is harder. I am forced to navigate a system and a world not designed for me with very little built-in to help me. I also am not good at reading people, and it’s a challenge to mimic non-autistic people’s social norms. The majority of the time I also display body language and speech patterns that are visibly Autistic and/or neurodivergent.

Not all autistic people who speak the majority of the time are like each other, and it is harmful to assume this falsehood. I received and still get little support, in the past (such as during college) and now, when I need it. Many posts I see that are intended to be helpful for the type of Autistic they assume I am are actually not, either. And it harms Autistic people with higher support needs than mine, as well. The narrative doesn’t leave much room to presume competence (which is different than valuing a person only if they have some secret gift, which many seem to base their respect around). Few posts in the community are geared to be helpful for high-support Autistics who are very visibly so (Yes, I have admittedly written these posts before, and will probably mess up again in the future).

People who espouse this narrative seem to assume that other Autistics have the same struggles and the same strengths – and therefore there is no room to even consider what high-support Autistic people, and other people who don’t fit the narrative, can contribute to our movement. Non-autistic people should stop judging us from one or two features. But some in the Autistic community would do well to stop, too.

*(For the record – no, I’m not saying most of the people in the community make these kinds of assumptions. Just some do, but it still really needs to stop).

Teach Autistic Youth They Have a Community

Other Autistics have written on the importance of disclosing an autism diagnosis to children. I fully agree. I also think knowing a diagnosis is a powerful tool in many ways, but it is not the only obligation of parents. I knew immediately about my ADHD diagnosis at age 7 or 8, then later my autism diagnosis at 14. I didn’t know I was disabled until college.

Many adults in my life told me I had ADHD. They just said it made me hyper, and gave me attention issues… then kept saying the same positive things about me: Smart. Unique. Creative. Reads a lot. When I got my autism diagnosis, they started saying: Smart. Reads a lot. Very high-functioning. Uniquely aware [of the diagnosis]. When they spoke of things I struggled with – like attention issues, staying organized, being polite, and making the right words happen – it was not to acknowledge disability, only deficit. It was not to work with me or discuss ways other people could adapt. I needed to adapt to the world, except for some accommodations.

They tried to quantify my life into skills and deficits. They told me I was more aware than others – like those in the special education classrooms – despite those kids being the most accepting of me when I hung out in their classrooms. I learned my deficits outweighed other qualities. I learned that there was no one else at all like me. I learned that I was alone. Not knowing what the diagnosis meant affected the ability to find friends, worsened depressive episodes and anxiety, and increased social isolation.

In my younger years, I had been able to get by through extensive book reading, writing fiction, and other solo activities. As I aged, my differences became more apparent. I wondered why I couldn’t be like everyone else or have friends. I had about one close friend in my high school years – an online one who meant a great deal to me. We couldn’t meet up in person, which I wanted desperately.  I wouldn’t know anything else but isolation until college – and making two autistic friends, along with a couple of others who accepted me.

The diagnosis given to me answered the question why for why I worked the way I did. No one helped me understand how it made my brain and body work. No one explained that it is a disability with ups and downs and effects from society. No one aided me in accessing community and culture. The diagnosis did not simply hand me all the tools I needed for life, in of itself. Community, once I found it, did.

Much of the autistic community may exist online, but it is vital. It will give youth access to writings by other autistic people. It gives them access to people who have written or know about coping tools, self-advocacy, and policy issues. It gives autistic youth an autistic culture. Parents (and other adults interacting with autistic youth), please explain autism to autistic youth. Please tell them more than a diagnosis. Please help them find other autistic people. If you don’t know the answers to their questions about autism, ask autistic people. It will change their world at least as much as telling them the diagnosis.



Part Two (Upcoming): Tips and Ways to Teach about Community

My Autistic Wishlist

There is an autistic wishlist hashtag event going on over on Twitter. It is aimed at advocacy organizations.


This particular autistic wishlist is not directed primarily at advocacy organizations. It’s not going in the hashtag.


It is directed at a community constantly in pain. A community constantly expanding outward, pushing against the fringes. A community that could probably stand to be gentler of people with clumsy language and communication disabilities (see my Autistics Speaking Day post).


My autistic wishlist is that our community can handle the constant pain of both outside forces, and turning inward at each other. That our community, expanding outward and challenging perceptions, can introspect long enough to fight together and dispel the distrust constantly aimed at each other.


Yes, I do have a long list of things I wish for with advocacy groups. But it is alongside a deep desire for our existing community what I have tried to outline above.


If you are with me, this journey will be hard. But I will support you any way I can.