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.