person first language

In which I respond as a Jew to an anon telling me off for using the word “Jew”.

Content note: This is a response to a hostile anon. (I normally don’t post hostile asks. When I make an exception, I post a content note so that people who avoid hostility can skip the post if they want.)


Anonymous said to realsocialskills:
That awkward moment when a social skills blog calls people of the jewish faith “jews”


realsocialskills said:

I’m about to be ordained as a rabbi in a few weeks. 

I’ve been in an intense graduate program for the past five years, I went to yeshiva before that, and I majored in Jewish history undergrad. I think I’ve earned the right to an opinion on this.

And since I’d rather procrastinate than work on cleaning my apartment for Pesach, I’m writing a long reply to this about why I have the language preferences I have:

I’m not a big fan of ideological commitment to person-first language in any case. I identify as disabled and autistic rather than as a person with autism. For similar reasons, historically-popular euphemisms like “people of the Hebrew persuasion” and “people of the Mosaic faith” make me really uncomfortable, and insistence on “Jewish people” over “Jews” makes me mildly uncomfortable. 

That said, I try not to get too fussed over language disputes, for reasons that are captured well in Amorpha’s “On Language Dickery”. I think that what matters most is respect, and also respecting the language used by members of the group you’re talking about. (Including respecting a legitimate range of preferences within groups you’re part of.)

I don’t know anyone who refers to themself as a “person of the Jewish faith”. I’m sure there are some people who identify that way, but it’s very much not the norm in any communities I’m part of. There are people who have strong preferences about “Jewish” vs “Jews” as ways of referring to themselves — personally, I use the terms interchangeably. (Depending on which words make for the most clearly understandable sentences.)

In my experience, Jews do not define ourselves solely as a religious group, and it’s pretty weird to insist on referring to us as “people of the Jewish faith”. There’s a reason why “Jewish studies” is its own subject and generally speaking not a subset of “religious studies”.  Judaism is a religion, and that’s an important part of Jewishness and Jewish culture, but it’s not the *only* important part.

One way I’ve encountered this in my work is that when I did a chaplaincy rotation, when I’d introduce myself to Jewish patients, they’d usually start the conversation by saying “I’m not religious” — and we’d still have a lot to talk about. People who come from minority cultures have all kinds of experiences and perspectives relevant to that, regardless of what they believe about God and religion.

You can also see this on the level of Jewish organizations and Jewish movements:

For instance, BBYO is a Jewish youth organization that has much more to do with being part of a minority culture and learning to be a strong leader than it does with religion. 

Similarly, the National Yiddish Book Center is a Jewish organization, but it’s not a religious organization. It’s an organization dedicated to the preservation of Yiddish and Yiddish literature, a language which is endangered because a high percentage of its speakers were murdered by Nazis, and a high percentage of speakers in other countries were forced to stop speaking it.

Similarly, Zionism was initially an avowedly secular movement, and the rebirth of Hebrew as a spoken language was not religiously motivated. (And in fact met fierce religious opposition.) Jewish literature in Modern Hebrew is not an intrinsically religious thing. It runs the whole range of perspectives, just like any other language. 

There’s even a Secular Yeshiva in Tel Aviv, which has the mission of giving secular Jews access to the skills to read traditional Jewish texts *as secular Jews*. I don’t think “people of the Jewish faith” describes this group particularly accurately. 

Nationality and language aside, there’s also a strong tradition of Jewish humor (some of which is pretty dark, because our experiences over the centuries have been really dark and sometimes laughing is better than crying). Here’s a page with a large collection of it. Some of the jokes have to do with religion, some do not. One iconic Jewish joke is:

  • A violent antisemite stops a Jew in the street and demands: Who is responsible for the war?
  • The Jew replies: The Jews and the bicyclists.”
  • The antisemite replies: “Why the bicyclists?” 
  • The Jew replies: “Why the Jews?” 

And many of the Jewish jokes that address religion are decidedly irreverent:

So it seems that these four rabbis had a series of theologicalarguments, and three were always in accord against the fourth.   One day, the odd rabbi out, after the usual “3 to 1, majority rules” statement that signified that he had lost again, decided to appeal to a higher authority.

“Oh, God!” he cried. “I know in my heart that I am right andthey are wrong! Please give me a sign to prove it to them!”  It was a beautiful, sunny day. As soon as the rabbi finished his prayer, a storm cloud moved across the sky above the four. Itrumbled once and dissolved. “A sign from God! See, I’m right, Iknew it!” But the other three disagreed, pointing out that stormclouds form on hot days.  So the rabbi prayed again: “Oh, God, I need a bigger sign to show that I am right and they are wrong. So please, God, abigger sign!” This time four storm clouds appeared, rushed toward each other to form one big cloud, and a bolt of lightning slammed into a tree on a nearby hill.  "I told you I was right!“ cried the rabbi, but his friends insisted that nothing had happened that could not be explained bynatural causes.  The rabbi was getting ready to ask for a *very big* sign, but just as he said, "Oh God…,” the sky turned pitch black, the earth shook, and a deep, booming voice intoned, “HEEEEEEEE'SRIIIIIIIGHT!”  The rabbi put his hands on his hips, turned to the other three,and said, “Well?”

“So,” shrugged one of the other rabbis, “now it’s 3 to 2.”

That joke is actually based on a story in the Talmud.

Every rabbi I know makes jokes like this; nearly every Jewish person I know makes jokes like this. 

I could go on, but I have a thesis about Jewish liturgy and Jewish ritual to write, so I think I’ll stop here.

In short, I think that insisting that we should refer to ourselves as solely as “people of the Jewish faith” amounts to erasure of every aspect of Jewishness and Jewish culture other than religion. I think it also amounts to erasure of our history in which people have responded to us as a racial and ethnic group in ways that had very little to do with religious. These things are vitally important components of who we are, and I am not ok with erasing them.

tl;dr A hostile anonymous person sent me a message telling me off for saying “Jews”, and insisting that I should use “people of the Jewish faith” instead. I’m Jewish. I disagree. Scroll up to find out more about why.

Remembering that disabled people have perspectives

xmaymaychan33x said, in response to the post about noticing when repetition is communication:

Yes good. But also, sometimes when people with autism begin repeating phrases, it can just be a calming thing for them. They may like the way the words sound or they may like hearing your answer, and that makes them feel good and you should never ever judge someone for doing something that makes them happy.

(Also a little side note that I picked up from my special education class: it’s not very nice to refer to persons with disabilities as person, and better to say “person with _” because the first way emphasizes the disability while the second emphasizes that you are speaking about a person. An actual person who is no less valid than anyone else.)

realsocialskills said:

I’m autistic. I wrote that post a couple of years ago. I’d just realized that I’d been routinely disregarding another autistic person’s attempts to communicate with me. As soon as I noticed that I was ignoring her, I started listening. And I was kind of kicking myself for not figuring it out sooner, because I’ve been on both sides of that kind of conversation.

There is a strong cultural assumption that anything repetitive an autistic person does is either meaningless or sensory-seeking. I thought I was above making that kind of mistake. I wasn’t. I’m not. I don’t think anyone is. I think we all need to be reminded to take the possibility of communication seriously, every time.

I think that it’s connected to ways in which disabled people are often not included in conversations about disability. The assumption behind that is that we have nothing to say worth hearing, and that other people should speak for us.

Whenever that post gets popular again, special educators and special education students correct me and say that I shouldn’t call “them” autistic, I should call “them” people with autism. It doesn’t seem to occur to them that I might be autistic myself, and that what I’m saying might be an autistic perspective on autism.

I think that disability is an important enough part of who I am to be worthy of an adjective. I don’t need to distance myself from autism to know that I’m a person. Here’s a post from a physically disabled disability expert who also feels that way.

Preferring “autistic” to “person with autism” is a really, really common preference among autistic adults. Partly, this is because person first language is associated with horrible organizations like Autism Speaks. Here’s a post about some of the history and politics of autism language preferences.

There is a long history of disability rights advocacy on the part of disabled adults. Special educators should know about these things. They largely don’t. It should be taught in special education training programs and degrees. It largely isn’t. Special educators who understand the importance of adult disability perspectives largely have to seek them out on their own. One good book to start with is Too Late To Die Young by Harriet McBryde Johnson.

From an autism-specific perspective, The History of ANI, Help, I seem to be getting more autistic, Navigating College and Inertia: From Theory to Praxis are good things to read. And the Autistic Self Advocacy Network, AutCom, and Autism Women’s Network are good organizations to know about.

It’s important to seek out perspectives of adults similar to your students. It’s also important to listen to your students themselves.

Getting back more directly to your reply to my post:

It’s definitely the case that autistic people repeat stuff for a number of reasons. Some autistic people sometimes repeat things for calming, or for sensory pleasure, or for aesthetic reasons. Those are all real things, and they’re all worthwhile things that need to be respected.

The problem is that people routinely interpret autistic communication as sensory seeking or similar. Then they completely ignore what the autistic person is actually saying. This is often taken to extreme lengths. There are a lot of autistic people in the world who are assumed to have no communication, and who are never listened to about anything, ever.

Far too many people who should know better, including professionals, treat autistics as though they have nothing to say worth hearing, and ignore all of their attempt to communicate. Sometimes this is expressed in negative, stigmatizing terms. For instance, a behaviorist might create a behavior program to stop someone from repeating the echolalic phrases they use to communicate. Sometimes it’s expressed in positive, embracing terms. For instance, a Floortime-DIR practitioner might interpret their repetitive communication as an unmet sensory need and put them on a swing in a sensory gym. The stigmatizing approach is more obviously brutal, but the net effect is the same.

Having your communication ignored in a room full of toys by people who think they’re respecting you is still being silenced. And it’s very, very important to keep that in mind. Because it does the same damage regardless of your intent. None of us are above making that mistake, and people who are ignored get hurt even if you didn’t understand that you were ignoring them.

I think that it’s always important to consider the questions:

  • “Are they trying to tell me something?”, and:
  • “Do they know I’m listening?”
  • “How can I verify that I understand what is being communicated?”

It’s also important to consider what would support their communication more effectively:

And above all, it’s important to remember that the person you’re interacting with is thinking, and that their thoughts matter. Whether or not you can tell what they’re thinking, their thoughts exist and you can’t speak for them. Their perspective will not always match yours, or their therapist’s, or their parents’, or what you were told in education classes.

Reading the work of adult autistics and other disabled adults who have a variety of perspectives might make it easier to keep this in mind. It might also help you to make better guesses.

It’s also important to remember that listening to us is not a substitute for listening to your students. They have a perspective of their own, and no one can speak for them. It is absolutely vital to find effective ways of listening to them.

tl;dr A lot of autistic communication gets disregarded as stimming. A lot of autistic people whose communication is atypical get ignored all the time, about everything. It’s important to remember that autistic people have perspectives, and to find ways to listen to them.

I say "autistic" on purpose

Anonymous said to :

Hello friend, I’d like to reblog you post about communication with people with autism, but it really bothers me that the whole thing says “autistic people” is there any chance you could edit it to be person first language? (Person with autism) ((because they are a person first and the disorder second.))

realsocialskills said:

I’m autistic, and that’s the language I prefer, so I’m not going to change it. A lot of autistic adults actually find person first language very offensive.

I wrote a post about autism language politics and history a while back that explains more about why. The short version is that many of us see autism as part of who we are and not separable from our personhood. (You don’t say “person with femaleness”, “person with Christianity”, “person with Britishness” or anything like that - it’s only use for stigmatized categories. We don’t want autism to carry that kind of stigma.)

I also want to address something else. Your ask said “they” about autistic people, which to me suggests that you’re probably not autistic and that you assumed I’m not either. It might be worth asking yourself why you made that assumption.

To me, autistic people are “we”, not “they.“

Autistic people are everywhere, and we have opinions. If you’re talking about autism, it’s a good idea to assume that there are autistic people in the room.

tl;dr It’s not wrong to say “autistic”. It’s a legitimate preference shared by a lot of autistic adults for important reasons. When a conversation about autism is happening, it’s good to err on the side of assuming that autistic people are part of the conversation. (And if they’re not, that’s a problem that needs to be solved.)

Respectful language as a nondisabled person

tiraspark replied to your post “person first language?”
I also think it’s very different for a disabled person to use these terms interchangeably than it would be for an abled person. You get to make that decision for yourself because you’re a part of the group so to speak?

realsocialskills said:

I don’t think so, actually. Nondisabled people have to use some form of language to refer to us. 

There’s not really much neutral terminology, and there isn’t a broad cross-disability consensus about which language is better. Even within disability groups, this issue is often contentious.

Nondisabled people have to call us something when referring to us, and I think that they could do worse than using both terms interchangeably. 

This article by an SLP, “Would you accept this behavior toward a non-autistic child?” is a piece that I think uses both terms in a clearly respectful way.

person first language?

andreashettle:

realsocialskills:

Anonymous said to realsocialskills:

Why do you use person first language? I usually only see bigoted ableist people use pfl. What convinced you that pfl was the best choice for you (and other disabled people, since you use pfl to refer to disabled people generally)?


realsocialskills said:


I actually use both more or less interchangeably, except when I’m talking about or to a group that has a clearly expressed preference. (Eg: I don’t ever say “people with deafness” when I’m talking about Deaf people, I don’t ever say “intellectually disabled people” when I’m talking about people with intellectual disabilities, and when I’m talking about the autistic community associated with ANI/ASAN/AACC/autistics.org I don’t say “people with autism”). Mostly, though, I use whatever is more grammatically comfortable in the sentence I’m saying. 


When I am talking about things that apply to more than one group, I usually find it easier to say “people with disabilities”, because it’s the most straightforward way to express that I’m talking about more than one thing. I think it also is clearer as a way for me to acknowledge that a lot of people have more than one disability.


Also, person-first language is not only preferred by ableist bigots; it’s also preferred by important groups of people who are actively fighting ableism. It’s pretty strongly preferred by many people who are trying to emphasize their humanity in the face of people who only see them as a disability case study. I wrote a post about this a while back about the autism-specific politics of person first language.


I respect all of the disability-affirmitive reasons that some people prefer to be called disabled and all the disability-affirimitve reasons that some people prefer to be called people with disabilities. I don’t have a particular position on who is right. My own preferences for myself shift a lot, and depend a lot on context. I mostly just use whatever language people around me are using, unless I feel like they’re using language specifically to express contempt.


 andreashettle said:

I think it’s worth being aware that preferences can vary from one country to another.  In the UK, there tends to be a very strong preference for identity-first language, and for using the word “disabled” rather than “people with disabilities.”  In the UK context, the word “disabled” more specifically means “disabled BY ACCESSIBILITY BARRIERS IN THE ENVIRONMENT”.  So in the UK context, the word “disabled” is very much steeped in the entire social model concept of what a disability IS—it’s not just an impairment in the body, it’s accessibility barriers imposed upon us by our environment.

Meanwhile, “person first” language was first originated BY PEOPLE WITH DISABILITIES in the United States, more specifically people with intellectual disabilities.  It has come to be adopted by the wider cross-disability movement in the United States and also in many other English-speaking countries (NOT the UK, but elsewhere) and also in Spanish-speaking countries (in Spanish, “personas con discapacidades”).  And, yes, I do mean organizations and communities led by people with disabilities ourselves, NOT just the parents or professionals.  Check the website of the American Association of People with Disabilities, for example: most staff and board of directors there are people with disabilities. Many Americans with disabilities are offended by the term “disabled”: they don’t view the term as being specific to the context of being disabled by an inaccessible environment, they view it as a term that puts emphasis on their impairment over their person hood. 

However, in the U.S., parents/family/professionals who are not in the habit of working closely with disability-led groups actually don’t use the “person with disabilities” language, they’re more likely to use terminology like “people with special needs” (which many Americans with disabilities dislike).   U.S. based parents/professionals who do say “people with disabilities” usually learned that from the disability-led cross-disability community in the U.S. (or U.S.-influenced countries)

As Real Social Skills points out, there are some specific disability communities in the U.S. and elsewhere that has come to prefer identity first language including signing people who identity as members of the culturally Deaf community, autistic people, some blind people, etc.  But in most cross-disability contexts in the U.S., person-first language does continue to prevail among people with disabilities themselves, and is NOT the exclusive domain of ableist people refusing to listen to leaders with disabilities.  So before accusing someone of being ableist for preferring person-first language, find out what country they’re from and who they learned that language from.  They may have learned it from Americans with disabilities.

Same thing for Americans who become offended when someone uses the word “disabled”.  No, “disabled” does not always mean the same thing it means in the U.S., and is not the exclusive domain of ableist people. Before being offended, find out what country they’re from and where they learned it: they may have learned it from disabled people in the UK.

Anyone insisting that only ableist people use person-first language, I would have to guess is probably from the UK where person-first language apparently never took hold.  Or else they might be from a country whose disability movement continues to be heavily influenced by the UK.   (I’ve been told by a few people that there are SOME segments of the disabled community in the UK that have started using U.S.-influenced “person first” language.  But based on what I’ve seen online—not only Tumblr but also other forums—I don’t get the sense that this has reached the grassroots level).

When you start looking more globally, beyond just the US and the UK, U.S.-influenced person-first language has been adopted by a lot of the global cross-disability movement, for example check the International Disability Alliance (IDA), which is an umbrella organization for various international disability-led organizations (aside from a couple of international organizations of families of people with intellectual disabilities, all its member organizations are led by CEOs and board of directors who are predominantly people with disabilities themselves).  Some of its member organizations, like the World Federation of the Deaf, do prefer identity-first language, though others (for example, the European Disability Forum) use person-first.  IDA, like most of its member organizations, is itself a disability-led organization.

But even internationally the picture gets muddled: Disabled People International, for example … well, you see from its name!

realsocialskills said:

This is a very important addition. Thank you.

Person first language?

Anonymous said to realsocialskills:

Why do you use person first language? I usually only see bigoted ableist people use pfl. What convinced you that pfl was the best choice for you (and other disabled people, since you use pfl to refer to disabled people generally)?

realsocialskills said:

I actually use both more or less interchangeably, except when I’m talking about or to a group that has a clearly expressed preference. (Eg: I don’t ever say “people with deafness” when I’m talking about Deaf people, I don’t ever say “intellectually disabled people” when I’m talking about people with intellectual disabilities, and when I’m talking about the autistic community associated with ANI/ASAN/AACC/autistics.org I don’t say “people with autism”). Mostly, though, I use whatever is more grammatically comfortable in the sentence I’m saying. 

When I am talking about things that apply to more than one group, I usually find it easier to say “people with disabilities”, because it’s the most straightforward way to express that I’m talking about more than one thing. I think it also is clearer as a way for me to acknowledge that a lot of people have more than one disability.

Also, person-first language is not only preferred by ableist bigots; it’s also preferred by important groups of people who are actively fighting ableism. It’s pretty strongly preferred by many people who are trying to emphasize their humanity in the face of people who only see them as a disability case study. I wrote a post about this a while back about the autism-specific politics of person first language.

I respect all of the disability-affirmitive reasons that some people prefer to be called disabled and all the disability-affirimitve reasons that some people prefer to be called people with disabilities. I don’t have a particular position on who is right. My own preferences for myself shift a lot, and depend a lot on context. I mostly just use whatever language people around me are using, unless I feel like they’re using language specifically to express contempt.

Why I don't use person first language about autism

poorcalypso:

Social skills: noticing when repetition is communication

littlelionheartedavatar:

darziel:

realsocialskills:

So there’s this dynamic:

Autistic person: The door is open!

Other person: I *know* that. It’s hot in here.

Autistic person: The door is open!

Other person: I already explained to you that it’s hot in here!

Autistic…

poorcalypso

the only thing i would add to this post is the importance of people-first language “person with autism” rather than “autistic person”

realsocialskills said:

That was actually a deliberate choice and not a mistake. I’m autistic myself, and I’m part of an autistic culture that actively dislikes person-first language. In my community, person-first language is associated with parents who want to speak for us rather than listening to us about our needs and perspectives. It’s also associated with the belief that our autism is somehow contrary to our personhood, or that it’s separable from who we are. Most of us find that idea very offensive.

I wrote a post on the politics of person first language and autism a while back.

Autism language politics and history

youneedacat:

realsocialskills:

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. 

youneedacat said:

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.

realsocialskills said:

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

Autism language politics and history

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.