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.
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.
Yes, that too. Thank you for pointing that out, it’s really important and I should have included it.