self advocacy

Autistic people don't all want boring jobs

Lately, I’ve been seeing a lot of variations on a story that goes “Autistic people love detail, and it makes them naturally well suited for repetitive jobs that most people find intolerably boring.”

This is usually said with great fanfare, and described as a step away from stigma and towards celebration.

But — autistic people don’t all have a convenient love of tedious tasks. Some of us find them as boring as everyone else does.

This model of “autistic strengths” celebrates us doing jobs everyone else hates. It has no room for us to pursue jobs that others want. We’re supposed to stay in a special place for special people, doing the boring tasks the ideology says we love — and making no trouble for the normal people who do the interesting jobs.

This isn’t ok, and it isn’t acceptance. Some of us like things that others don’t, but none of us should be forced into a box. Autistic people have the full range of interests, talents, and skills that anyone else does. We shouldn’t be tracked into jobs based on stereotypes. We have the right to decide for ourselves what to pursue.

Advocacy is not cute

Sometimes disabled people get treated like they’re not adults. 

This is particularly true when people with disabilities are involved in disability related advocacy. And it goes triple for people who have intellectual disabilities. (Or are perceived to.)

If you’re doing advocacy and someone treats it as cute, they’re being rude. If someone treats your presentation like a game you’re playing, they’re being rude. People should have more respect than that, even if they disagree with the point you are making. 

If you think someone else’s advocacy is cute, it’s probably important to work on learning to respect them more.

Advocacy is not cute

withasmoothroundstone:

realsocialskills:

Sometimes disabled people get treated like they’re not adults.

This is particularly true when people with disabilities are involved in disability related advocacy. And it goes triple for people who have intellectual disabilities. (Or are perceived to.)

If you’re doing advocacy and someone treats it as cute, they’re being rude. If someone treats your presentation like a game you’re playing, they’re being rude. People should have more respect than that, even if they disagree with the point you are making.

If you think someone else’s advocacy is cute, it’s probably important to work on learning to respect them more.

withasmoothroundstone said:

I once saw a guy with an intellectual disability giving a speech, which was about how he was part of his community just as much as anyone else, that he had godchildren, that he took this seriously, etc.  His entire point being that people with disabilities are part of the normal world as much as anyone else.

And practically everyone in the room were neurotypical parents, who sat there tittering at him the way you do when a small child does something cute.  I sat there wanting to smack every single one of them upside the head.

Later on that day, I got mad enough at someone to actually say something, and the response among the parents were to whisper “Amazing” to each other – they’d been watching me all day and assuming I wasn’t thinking.  (That was my biggest wake-up call as to how outsiders perceived me.  I went home and videotaped myself and was floored at what I saw, I’d never understood how others saw me until then.)  They didn’t, of course, listen to a word I said.  The fact that I was saying anything at all was worthy of amazement.

A basic problem with ABA

Content note: This post is about ABA and abuse culture within ABA. Proceed with caution.

Applied Behavior Analysis and other forms of behaviorism combine these things in a disastrous way:

  • Behavior analysts with highly idealized notions of What People Should Do and How People Learn
  • Highly developed behavior modification techniques that can be effectively used to make people do complex things at the direction of the therapist
  • Disabled people who are socially devalued to the point that behavior analysts are given free rein to modify their behavior
  • A hierarchy of behaviorists, in which lower level behaviorists have to rigidly follow the plans of those above them in the hierarchy (and take data proving that they have done so) regardless of what the person they’re doing it to communicates

This is present at the heart of ABA culture. Behavior analysts have a notion of how they’d like the world to be, and they use powerless people with disabilities as props to make the world look that way.

Some BCBAs mean well; some don’t. Most BCBAs probably believe that they are helping vulnerable people to learn in the only way possible. Some BCBAs even teach some of their students useful skills using the principles of behavior analysis. None of that solves the core problem in behaviorist culture. The combination of ideology and power is dangerous, no matter how well-meaning those who wield it are.

All behavior therapists have far, far more power to control their students than anyone should ever have. Complex effective behavior modification techniques create a dangerous level of power in themselves. In a better world, this could be moderated by a professional culture that acknowledged the danger in this power and had rigorous standards about using it in consensual ways. Behaviorist professional culture could be like that, but it isn’t.

All of them are part of a professional culture that constantly gives them the message that the level of power they have over their students is necessary and important, and that it’s the only possible way their student can be ok in any way. (They may even be getting the message that they don’t have enough power over their students, and taught to lament the fact that they don’t have enough power to be truly effective.)

It’s possible to use behaviorist principles to teach someone how to dress themself. It’s just as possible to use the same principles to teach someone that she must wear only feminine clothing or that he must never wear a skirt. And that’s an easy line to cross without even realizing it. Behaviorists have highly developed techniques for controlling behavior. They don’t have highly developed techniques for *refraining* from controlling behavior, or being ethical about *which* behavior they’re controlling. They have vaguely defined professional ethics about not hurting people, but that’s nowhere near good enough.  

This problem plays out in any number of ways. 

It’s like – a hydra. Some of the heads are things like electric shock and starvation. And other heads are taking away everything a victim loves and making them earn it back with compliance. Or training children that stimming and other forms of autistic body language are wrong. Or forcing children to enact the therapist’s stereotypes of appropriate play.

Some of the heads are much subtler. Some of them don’t have words yet. Any head of the hydra, by itself, represents a serious violation. None of them is the entire problem.

Any BCBA can cut some of those heads off the hydra, and say “Not all BCBAs are like that!”. Or “nobody uses electric shock anymore; that was in the 70s!” or “My ABA is play-based” or “I give kids frequent breaks; no 2-hour sessions of DTT here,” or “I would never extinguish stimming.”

But cutting off some of the obvious heads, or even all of the heads that self advocates have found words for, doesn’t solve the basic problems.

The hydra is still there even if all of the named heads are cut off. Cut off all of the heads anyone has found words for, and you still have the basic problem of people with extreme levels of power to modify the behavior of people with disabilities in arbitrary ways. Behaviorism will never be ok until that problem is solved.

It might be possible to be a behaviorist without being part of the hydra. If anyone’s doing it, it’s Dave Hingsburger and some of his students. But people who want to use principles of behavior therapy in a respectful (or even just non-abusive) way face a tremendous barrier to entry in the field. In order to become a BCBA high up enough in the hierarchy to write programs following your values, you have to spend a lot of hours doing entry-level behavior therapy works. That means following someone else’s program. That means doing a lot of harm to innocent people with disabilities, unless you can somehow find a supervisor who goes against the entire culture of behaviorism to treat people with disabilities as fully human.

tl;dr Behaviorism has some potentially legitimate applications, but the professional culture of behaviorism is deeply committed to abuse of power. It’s nearly impossible to be a behavior therapist without doing profoundly degrading and damaging things to people who deserve better. (And if you think you’re doing so, I’d like to hear about how you’re managing that).

Disability and power

A group of people with disabilities is not always a group in which everyone has equal power. 

Some examples (by no means an exhaustive list, and not all of these examples apply all the time):

People who are better at asserting power can have more power.

People who speak more easily can have more power.

People who think more quickly can have more power.

People with the most common disability in the group can have more power.

People used to being ok with their disability can have more power.

Power dynamics in a group always need to be monitored and taken seriously.

Restricting the group membership to people with disabilities can be part of the solution, (because it can eliminate the part of the problem involving nondisabled allies and parents taking over), but it can never be the whole solution. Power dynamics exist in all groups, even with members of the same marginalized group.

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.