community – Real Social Skills

Some people emphatically prefer to be called people with autism. Others get very offended. Some people emphatically prefer to be called autistic people. Others get very offended. There are reasons for all of that.

They have to do with the history of the intellectual and developmental disability community, the autism parent community, and the specific autistic self advocacy community.

For intellectual and developmental disability:

Most self advocates have a very strong preference for person-first language
Person-first language in this concept means “I am a PERSON, and I am not going to allow you to treat me as a disability case study, nor am I going to tolerate your diagnostic overshadowing.”

Autism is a developmental disability. There is a highly visible and destructive community of parents who consider themselves to be afflicted with their child’s autism. There is an autistic self advocacy community that developed in part specifically due to the need to counteract the harm being done by autism parents. The language someone prefers will often depend on which of these facts seems most important at a given time.

Regarding developmental disability.

Folks who are primarily involved in the IDD self advocacy community usually prefer to be called people with autism
This is for the same reasons people with any sort of developmental disability usually prefer person first language
In that context, “person with autism” means “I am a PERSON, and you are not going to treat me like an autistic specimen.”

Regarding the destructive autism parent community:

This parent community pushes the agenda of parents who believe that their child’s autism is a horrible tragedy that befell their parents and family
They call themselves the autism community, but they consistently refuse to include or listen to autistic self advocates (especially adult self advocates). They only care about neurotypical parent perspectives (and only from parents who think autism is horrifying)
They promote things like intense behavioral therapy for young children, institutionalization, group homes, sheltered workshops and genetic research aimed at developing prenatal testing. They do not listen to autistic self advocates who object to these things.
They don’t care about the priorities of autistic self advocates. They do not do any work on issues such as self-directed adult services, enforcing the Olmstead mandate to provide services in the community rather than institutions, or research into skills for listening to people whose communication is atypical
These parents have an emphatic preference for person first language. They say “people with autism.”
What they mean by this is “Autism is NOT a part of who my child is, it’s an evil brain slug attached to their head, and I want to remove it at all costs.”

There is also an autistic self advocacy community. It developed in significant part to counteract the harm done by the autism parent community:

A lot of the agenda of the autistic self advocacy community is the same as the IDD community and pursued in cooperation with the IDD community
But there is also a lot of work that’s specifically about countering the harm that has been done by the autism parent community
Much of the worst harm done by the parent community comes from the cultural consensus that autism is like an evil brain slug, and that any amount of brutality is a good thing if it might mean that the slug shrinks or dies
For this reason, participants in the autistic self advocacy community generally have a very strong objection to person first language
They call themselves autistic or Autistic.
In this context, “autistic person” means “Autism is part of who I am. I’m ok. Stop trying to get me to hate myself. You do not need to remove autism to make me into a full person. We are already people. Stop physically and emotionally mutilating people in the name of treatment.”

Neither set of self advocates are wrong. Both positions are legitimate and important to be aware of. In order to know what someone means by their language choices, you have to consider the context.

An addition from Mel Baggs:

And there’s also an autistic self-advocacy community that is separate from the DD community and also separate from what most people call “the autistic self-advocacy community”. That self-advocacy community is heavily affiliated with a parent community that also prefers person-first language. In many cases, people in that community prefer “person with autism” both because of the history of their community, but also because for them being called “autistic” has always meant “you are nothing but your autism and you are nothing but a walking collection of symptoms”. Which is a much more common experience for people in that community, because they tend to be people who were considered low-functioning for their entire lives. AutCom — as originally constituted, not as recently-blended — is a good example of such a community, so are any communities that are largely made up of FC users.

There are two kinds of problems that get conflated a lot but aren’t actually that similar:

People who do creepy things because they have trouble understanding boundaries
People who do creepy things because they understand boundaries well and have highly developed skills at violating them with impunity

People who are good at violating boundaries and getting away with being creepy sometimes seem socially awkward, and sometimes don’t. Sometimes they get away with it by getting people to think things like “Oh, that’s Bill. He’s just awkward like that. He doesn’t mean anything by it,” and sometimes it’s more like, “I can’t believe James would do that! He’s like the nicest guy ever, and he does so much for this community. Don’t you remember the awesome party last month?”, and sometimes it’s more like, “Steve is really sensitive right now. Did you really have to turn him down like that? Couldn’t you have given him a chance? Don’t you understand how much courage it takes to approach a girl? What harm could giving him your number have done?”.

People who are inadvertently creepy *care* when they’ve violated boundaries, and try to fix it. Saying, “oh, they’re just awkward” isn’t doing them any favors, because people who are inadvertently creepy don’t *want* to trample all over other people’s boundaries. They want to know, so that they can stop doing it. This doesn’t mean it’s the job of victims of their creepy actions to explain it to them – it isn’t, particularly since most creepy people are doing it on purpose, and calling skillfully creepy people on things tends to go badly. I am mentioning this because skillfully creepy people often convince others that being “just awkward” means that everyone else is obligated to refrain from objecting to their creepy actions.

Skillfully creepy people who boundaries boundaries on purpose come up with excuses about why it was ok, and try to make you feel horrible for objecting. (Eg: “I was just being friendly! Learn to take a compliment!”, or “I know that if you were in your right mind, you wouldn’t have said that you didn’t want to spend time with me. I forgive you. We can still spend time together.”, or “Wow. Harsh. I guess girls really don’t go for nice guys. Have fun dating assholes.” or just getting a lot of people to laugh at you, or any number of other things.)

As a culture, we shouldn’t tolerate creepy behavior from anyone. Part of not tolerating it means assessing when people are being cluelessly creepy, and when people are being skillfully creepy.

If you are a supervisor/teacher/community leader, or otherwise someone responsible for intervening and keeping things safe, it’s important to respond appropriately. Communities need to help cluelessly creepy people understand how to act, and to expel skillfully creepy people so that they can’t keep preventing the people they hurt from being part of the community.