Open letter to disability professionals

Dear disability professionals,

I’m not sure why, but I keep encountering disability professionals who try to deny that disability exists, or to downplay its importance.

It’s so extreme that disability professionals often try to convince people with disabilities that we are just like everybody else. Even when our differences are the reason that you have a job.

We are not just like everyone else. We are alike in that we are all human, with the same basic needs and capacities that go along with humanity. We are also different, in that we have disabilities and most people do not.

Disability exists. Disability is important. People with disabilities are different from most people people in ways that matter. And we need those differences to be speakable.

Our bodies are different. We can’t make this go away by smiling, being brave, and trying hard.

The differences in our bodies matter. Most people can do things that are physically impossible for us. Most people can do some things easily that are excruciatingly difficult for us. The specifics of which things these are depend on the person and the disability. They always exist. That’s what disability means, it means having a different kind of body, a body that can’t do certain kinds of things easily or at all.

For everyone, with and without disabilities, understanding the limits of what our bodies can do is a key life skill. Everyone’s safety depends on understanding that they do not have wings, and that they can’t fly. My safety also depends on understanding that I have impaired vision, motor coordination, and executive functioning. Understanding these things means I have chosen not to drive, and that I have found adaptive strategies that enable me to cook safely.

From my perspective, the fact that I don’t concentrate hard and try to drive isn’t so different from the fact that I don’t flap my wings and try to fly. All I’m doing is acknowledging physical reality, and making choices that fit with my understanding of reality. Some of the physical limitations on what my body can do are the normal limits that apply to all human bodies. Other physical limitations come from my disability. They’re all just physical facts, they’re all just things I need to take into account when I make decisions. 

But as a person with a disability, I learned young that only some limitations are ok to talk about. If I say “I can’t fly”, no one contradicts me. If I say “I can’t catch”, people say “just keep trying”. Both are physically impossible for me. Trying hard will not make either possible. Neither will being brave, smiling, or believing in myself.

For some reason, many disability professionals seem to believe that honesty about our limitations will somehow destroy our self esteem. Actually, the opposite is the case. They want us to believe that if we just smile and keep trying, we can do anything that we put our minds to. But it’s a lie, and we get hurt badly when we believe it.

When professionals refuse to accept our limitations, they force us to attempt impossible tasks over and over. There is nothing positive about this experience. We try and fail, and we watch others our age succeed at the same tasks. If we believe that we can do whatever we put our minds to, then we feel like it’s our fault for not trying hard enough.

It hurts when people yell at us for failing, and it hurts when people plaster on smiles and urge us to smile and keep trying. “Come on, you can do it!” doesn’t sound like encouragement when you know that you will fail. It feels like being told that you’re somehow screwing up on purpose, and that if you would just decide to be a better person, you’d suddenly be about to do it. This kind of thing can go on for years, and it leaves scars. We often come to feel like we are unworthy people, and that there’s something deeply flawed about who we are. 

It’s very, very important that people with disabilities understand that we are disabled. We need to know that our bodies are different, and that some things that are possible for most other people aren’t possible for us. We can’t stop being disabled through an act of will. Our bodies limit us. That is not a moral failing. It’s just a fact of physical reality. And it needs to be speakable.

Our bodies and our disabilities are nothing to be ashamed of.  We don’t have to be different to be good enough. We don’t have to be nondisabled to do things that matter. We don’t have to do impossible things to be worthy of love and respect. We’re people, and who we are is ok.

And for professionals – please understand that when you refuse to acknowledge disability, you are teaching people with disabilities to be ashamed of themselves. This is probably not your intention, but it’s an inevitable consequence of making disability unspeakable.

It is much better to tell the truth. It is much better to support us in understanding who we really are, than to push us to believe in an impossible dream. I could dream of flying or playing baseball, but it wouldn’t get me anywhere. By living in the real world and working with the body I actually have, I can do things that matter. And so can all of your clients. There is no need for silence, evasion, or shame. Disability is important, and it’s much easier to live with when we can face it honestly.

Meaningful echolalia

Some people communicate mostly in memorized phrases or allusions to stories and events.

It’s actually pretty normal to communicate in phrases and allusions. I think most people communicate that way at least some of the time. For instance, a lot of people make Shakespeare references in situations that have little or nothing to do with literature. A lot of prose and interpersonal communication happens that way.

This is interpreted very differently for some people than others. People without disabilities who mostly communicate in literal language are taken much more seriously when they make allusions and quotes.

When a nondisabled person says “The lady doth protest too much, methinks”, it’s assumed that they’re communicating and that what they say is meaningful. They are usually understood. This is the case even if there are no ladies present and they’re obviously not talking about a lady.

Similarly, when a nondisabled person says something like “A horse! a horse! my kingdom for a horse!”, this is understood as meaning something even if they obviously do not have a kingdom and are known to hate horses.

When someone with a disability communicates in exactly the same way, their communication is often written off as meaningless. It’s often seen as sensory seeking, or stimming, or a persversation, and having no communicative content whatsoever. This kind of communication is often ignored, and also often seen as a problem behavior to be extinguished by a behavior plan.

This is in part because there’s a widespread belief that autistic people are all hyper-literal and only understand literal language. That’s true of *some* autistic people. But there are also autistic people who have the opposite problem. There are people who find it nearly impossible to use literal language to communicate, but who can readily make references and use literary phrases. (This is true for other kinds of cognitive disabilities as well; it’s not unique to autism.)

People who can only communicate in references deserve to have their communication taken seriously. So do people who find references much easier than literal languages. Everyone else is allowed to use references to communicate; people with disabilities have the right to do so as well.

Here’s an example of a situation in which communication is often misinterpreted. Imagine a girl named Sarah:

  • Sarah doesn’t say very many words reliably. She can usually say a few things like mom, food, want, home, and SpongeBob.
  • Sarah watches SpongeBob a lot
  • She wants you and other people in her life to watch it with her
  • She says a lot of phrases from SpongeBob
  • (Eg: “I’m ready!”, “One eternity later”, “SpongeBob, you and I both know you’re just using me as a distraction so you don’t have to write your essay”, “Why is it whenever I’m having fun it’s wrong?”, “I’m ugly and I’m proud!”)
  • Sometimes, the assumption is made that her repetitive phrases are preventing her from developing standard language
  • Or they might think that TV is preventing her from developing standard language and that her access to TV is limited
  • Or they might think that she’s perseverating on SpongeBob in a way that’s preventing learning
  • When maybe what’s going on is that SpongeBob is *teaching* her language and communicative concepts, and she’s trying to use them to communicate
  • If so, she should probably watch more TV, not less
  • And it’s really important for people in her life to listen to her
  • And understand the references she’s making and what they mean to her
  • (Watching the shows with her is probably an important part of that; showing her other shows might be too)
  • If you want someone to communicate, you have to listen to them, even when their communication is unusual

A lot of this post about listening to people whose speech is unusual applies in this situation too.

Short version: Repeated phrases are often meaningful. Some people with disabilities communicate mostly in memorized phrases and references and allusions to stories and other things. Nondisabled people are taken seriously when they communicate this way. Disabled people who communicate in references should be taken just as seriously. (Even when they don’t communicate in literal language very often or at all).

AAC does not replace nonverbal communication

This is a continuation of a series on why I think it’s a mistake to ignore nonverbal communication in an attempt to force someone to use AAC. (The short version: it’s disrespectful, it undermines someone’s ability to communicate, and it prevents people from developing a valuable skill.)

One reason nonverbal communication is important for AAC users is that you always have your body with you. That is not necessarily the case for AAC devices.

AAC best practices say that someone should have them available constantly. In practice, people don’t. This is for several reasons. One is that it’s not practical to take a device to some places (for instance, most people are not willing to take a high tech device to the beach, and low tech devices are a lot more limiting.) Another reason is that sometimes people forget, or vastly underestimate how close a device needs to be in order to be immediately available. Or any number of reasons, some innocent and some horrifying, and many a mixture of both.

Also, people take devices away from AAC users. They shouldn’t, but they do. Sometimes it’s accidental; sometimes it’s on purpose. It’s never ok, but people do it a lot. If you’re teaching a nonverbal child to communicate, you need to keep this in mind when you’re considering what to teach them. You can’t assume that people will always treat them appropriately, and you can’t assume that they will always have their device. If they are capable of communicating with their body, it is an important skill for them.

Whatever else happens, someone always has their body with them. People can do a lot more if they can use their body to communicate. Communicating in body language can make it possible to communicate in a swimming pool. It can make it possible to communicate with dirty hands. It can make it possible for someone to indicate that their device isn’t within reach and that they need it. It can make it possible to communicate about pain in medical situations. It can make it possible to communicate when someone else doesn’t want you to, and has taken your device away. It can make friendship possible that otherwise wouldn’t be. And any number of other things, all of which are important.

And in order to be able to communicate with body language, people need opportunities to practice and develop this skill. If you ignore someone’s nonverbal communication to encourage AAC use, you’re making it harder for them to develop comprehensible body language. That’s not a good idea, because comprehensible body language is important. People won’t always have access to their device. They will always have their body.

Short version: Nonverbal communication is important for nonverbal people, but parents are often encouraged to pretend not to understand it in order to encourage AAC use. This makes it harder for people to develop body language that others can understand. One reason this is a problem is that people don’t always have access to their devices, but people *do* always have access to their bodies. Nonverbal people should have support in developing nonverbal communication, because it is an important skill.

AAC is not a cure

This is a continuation of a series on why I think it’s important to listen to the nonverbal communication of nonverbal people. Often, parents are encouraged to not listen or to pretend not to understand, so that kids will be forced to learn AAC and use words. I think this is a mistake, for any number of reasons. The first post focused on the general importance of listening.

Another problem with this advice is that ignoring nonverbal communication discourages people from developing their nonverbal communication skills. That’s a bad idea, because nonverbal communication is a very useful skill for nonverbal people. It should be encouraged, not discouraged.

It’s valuable for several different reasons (and I assume, for many reasons I don’t know about.)

One is that AAC is not a cure, and it doesn’t make nonspeaking people just like people who can talk. Nonverbal people who have communication devices are still nonverbal. Currently existing AAC devices can’t do everything that speech can do. For instance:

  • AAC devices mostly can’t do tone. Voices usually can.
  • AAC devices can’t go everywhere. Voices usually can.
  • AAC devices can be taken away much, much more easily than voices can.
  • AAC is usually slow. That makes interrupting hard-to-impossible. Voices can usually be used to interrupt.
  • AAC is usually fairly quiet. Voices can usually yell.
  • Symbol-based devices generally don’t have anywhere close to sufficient vocabulary for emotional or physical intimacy. Voices do.
  • Many AAC devices give others a lot of control over what someone can say. Voices are usually more flexible.

For a lot of these things, body language and movement can be a more effective way of communicating than using a speech device. For instance, putting up a hand to say “stop!” is a lot more likely to be understood quickly than using an AAC device to say the same thing.

Similarly, most symbol sets developed that touch on sexuality at all assume the main reason people need sexual vocabulary is to be able to report abuse. Most of them don’t have robust symbols for discussing sexuality and sexual desire — and most of them don’t have any symbols for emotional intimacy at all. Body language can communicate things that a system designed this way can’t.

Another reason AAC is not like speech is that people who are nonspeaking, are nonspeaking for reasons. And AAC does not make those reasons go away.

Some people are nonspeaking because words are unnatural, painful, and cognitively draining. People like that deserve to be able to communicate in ways that are natural and comfortable. And it’s important for people close to them to listen to their natural communication. Ignoring someone’s most natural communication it is a rejection of their personhood. It’s important not to do that to people.

It’s also dangerous, because someone who finds AAC cognitively difficult and draining is likely not going to be able to use it all the time. For some people, this can be especially true when it’s particularly important to communicate, or when they’re sick. If you’re responsible for someone and you only know how to listen when they use AAC, that’s dangerous. If there’s another way they communicate, it’s important to develop your ability to understand it. (Or, if you can’t, to find someone who can.)

Similarly, if someone has apraxia or other difficulties controlling their body well enough to point, their physical ability to use AAC is likely to vary. And it’s still important to listen to them when they aren’t able to use it in the ways they sometimes can.

Short version: Access to AAC is important. It’s not the only thing that’s important, and it’s not a cure. Nonverbal people who use AAC are still nonverbal. Body language and using one’s body to communicate are also important skills. (Not everyone can learn to do this. For people who can, it’s valuable.) It is not a good idea to discourage AAC users from using body language to communicate.

In defense of nonverbal communication

Lately, I’ve been seeing a lot of posts giving parents of nonverbal kids the advice “pretend not to understand your child so that they will be forced to use AAC and communicate in words”.

I think this is a mistake.

I think that if you want to teach someone to communicate, it has to be built on a foundation of listening to them. And that means listening to all of their communication, not just communication that happens in words.

I also think that all of someone’s communication methods are important, and that they all need to be respected. There isn’t one true method of communication. They all matter.

Communicating through body language is useful for all people. People who can talk are allowed to communicate through body language, and actively encouraged to develop the skill of doing so. It’s expected that, when I smile, point to things, frown, or whatever, that people will listen to what I’m communicating. Nonspeaking people deserve the same respect.

People say “communication shouldn’t wait for speech”. I agree with that. And I think it shouldn’t wait for words either. Because words may never come. If you wait for someone to reliably use words to listen to them, you may end up never listening to them. And everyone deserves to be heard.

And even if they will eventually use words and sentences, the things they’re saying *now* still matter. And listening to them is still important.

Presuming competence shouldn’t mean assuming that with the right support, people will eventually base most of their communication on words. Presuming competence should mean assuming that, with the right support, people will choose the means of communication that work best for them. Which may be speech. Or a voice output communication device. Or sign. Or body language. Or pointing to a letter board. Or speech. Or any number of other things. Or any number of combinations of things.

Short version: Everyone deserves to be listened to. If you want to support someone in learning to communicate, it has to be built on a foundation of listening to them — in whatever form their communication takes. Ignoring one form of communication to force them to learn a different form is not respectful, and probably won’t help.

Appearing to enjoy behavior modificiation is not meaningful

One common response to criticism of ABA is to claim that people subjected to it enjoy it:

  • “My child loves his therapist and asks to go to sessions!”
  • “All of my clients smile and have fun!”
  • “My ABA is play based!”

What people forget is that affect is a set of behaviors, and that behavior modification methods work as well on affective behaviors as they do on anything else:

  • You can reinforce people to look happy
  • You can reinforce people to praise therapy
  • It doesn’t have to be an explicit part of the behavior plan to happen
  • And it can keep happening even after you fade direct prompts or direct intentional reinforcers

ABA programs give the therapist massive power over the person. That power in itself can cause people to look happy, through a more subtle reinforcement mechanism than takes place on a behavior plan:

  • If you have power over someone in the way that behavior therapists do, they’re going to be highly motivated to please you
  • If they figure out that you want to believe that they are happy, they are very likely to act like they are
  • If you treat them better when they display the affect you want or praise you, they’re likely to act happy.
  • It doesn’t mean they’re actually happy
  • Or that what you’re doing is good for them

(Also, affect often is an explicit part of someone’s behavior plan. It is not at all uncommon for ABA programs to involve actively ignoring distress and withholding attention and rewards until someone looks happy. It is not at all uncommon for ABA programs to involve teaching people to smile, to hug, or to otherwise do things that would out-of-context indicate happiness, enjoyment, or affection. It doesn’t have the same meaning if it’s prompted or trained.)

Also, programs based on positive reinforcement involving controlling someone’s access to stuff they care about:

  • The first step in a program based on positive reinforcement is to find out what someone most enjoys or cares about
  • (This is called a preference assessment or a reinforcement inventory. Here’s an example.)
  • And then making sure they have no access (or limited access) to those things outside of sessions or other situations in which someone is actively reinforcing them to do something
  • Of course if someone’s only access to everything important to them happens in sessions they will ask for sessions
  • That doesn’t mean they like the fact that someone has that level of power over them
  • (No one likes being manipulated that way.)
  • That doesn’t mean they like the things that the therapist makes them do
  • That doesn’t mean the power dynamic is harmless
  • That doesn’t mean ABA is a good approach to teaching

People who can’t say no, can’t say yes meaningfully. Looking happy isn’t meaningful if you’re rewarded for affecting happiness and punished for looking visibly distressed. Making the best of a bad situation isn’t consent.

thoughts on dating while autistic

A reader asked:

Hi! I’m autistic, and I’ve never dated anyone, although I have been asked out before. Truthfully, I’m terrified of dating or being in a relationship, because I’m almost 18 and I’ve never even kissed anyone before, and I’m embarrassed!

I’m a pretty attractive girl and very good at hiding my autism, so people are interested in me at first, until I totally mess up flirting because of my social awkwardness.

Can you tell me what dating/relationships are like, so I know what to expect/how to act? thanks!

realsocialskills said:

I can’t answer this directly because dating and relationships are different for everyone. They aren’t about scripts; they’re about building something with another person that works for both of you. I don’t know what they will be like for you. That is something that you will figure out as you get more experience.

But I can tell you some related things:

It’s ok to be embarrassed. Figuring out dating is embarrassing for most people. That doesn’t mean that you can’t date or have relationships. It just means that you will be embarrassed sometimes.

Flirting is at least sort of embarrassing even when it’s working. Figuring out whether or not someone is interested in you is at least somewhat embarrassing for almost everyone. Flirting is a way to make the process of figuring it out more pleasant than embarrassing.

Flirting effectively is a bit like learning to play the violin — just like initial attempts to play the violin sound terrible, initial attempts to learn how to flirt tend to be acutely embarrassing. That’s ok. It doesn’t mean something is wrong with you. It just means that there’s a learning curve.

Also — it’s not unusual to be 17 and not have kissed anyone yet. Sometimes the way people talk about teenagers can make it sound like everyone is dating and having sex, but it’s not true. Some people are, and some people aren’t. Both are ok. A lot of people your age haven’t kissed anyone. And the people who are kissing others also get embarrassed and unsure of themselves.

(It would also be ok even if it was unusual. It’s ok if some things are harder or take longer for you than they do for most people.)

Many of the skills involved in romantic relationships are the same skills involved in friendship. And one of the most important skills involved in friendship is figuring out how to tell whether you like someone, and whether they like you.

Figuring out whether you like someone can be hard for a lot of autistic people. Among other reasons, a lot of us are taught that we have to be friends with anyone who will tolerate our company. That’s not how dating works and it’s not how friendship works either.

If you don’t like someone, you shouldn’t date them. If you don’t like spending time with someone, you shouldn’t date them. If you’re hoping that they will change dramatically, you shouldn’t date them. It’s only a good idea to date someone if you like them and enjoy their company as they are now. You can’t build a good relationship with an imaginary person.

Similarly, it’s important to only date people who like you. People who are hoping that you will change, or who want you to act nonautistic all the time, are not people who like you.

You can’t become nonautistic to please people who find autism repellant, and you aren’t going to be able to hide autism from them forever. It always becomes noticeable sooner or later, because autism affects you and your experiences and impairments matter. You are who you are, and your disability is part of that. And that’s ok, because disabled people can date, and we can do it well.

The most important thing to know about dating and relationships is that, in good relationships, the people involved like and respect each other. Respecting and liking yourself is an important part of learning to build a mutually respectful relationship. Liking yourself helps you to like others; and to tell whether others like you. Respecting yourself helps you to learn to treat others respectfully; and to understand whether or not the ways others are treating you are ok.

From the way you phrased your ask, I think that you might be having a lot of trouble feeling ok about yourself as an autistic person. I think that it would help you a lot to work on understanding that it’s ok to be autistic, and that you can be a fabulous autistic human being.

It sounds to me that you think that you have to pass as non-autistic to be dateable. You don’t have to do that. Autism doesn’t prevent kissing and it doesn’t prevent love.

A lot of autistic people struggle to feel worthy of love and friendship. A lot of us feel repulsive a lot of the time. We’re often made to feel that our thoughts, feelings, interests, and body language are disgusting flaws. But they are not. We’re ok. Being autistic is ok.

We are beautiful. The way we look and the way we move and the way we think is beautiful. Autistic beauty is real, and there are people in the world who appreciate it.

We are often taught that, unless we learn to pretend that we’re normal, no one will ever like us. (That’s the basic message of the Social Thinking curriculum, for instance). We’re also often taught that we’re not allowed to make mistakes. A lot of us feel like every time we make a social mistake, it’s showing that we’re deeply flawed and hopelessly unworthy.

That makes dating really hard, because everyone makes acutely embarrassing social mistakes as they learn how to date. (And often even after they have a lot of experience.). It sounds to me like you might feel like you have to earn the right to date by never making any embarrassing mistakes. You don’t. If that was the standard, no one would ever be able to date. It’s ok to be fallible and embarrassed and unsure of things. You’re ok.

There are people who will appreciate your beauty. There are people who will find you attractive. There are people who will love you.

You can learn how to date, and you can do it as yourself.

ABA therapy is not like typical parenting

Content note: This post is about the difference between intense behavior therapy and more typical forms of rewards and punishments used with typically developing children. It contains graphic examples of behavior programs, and is highly likely to be triggering to ABA survivors.

A reader asked:

I just read your thing about people with disabilities and their interests. Don’t people do the same thing to typical children? Restrict access to things enjoyed until act ABC is completed? For example, growing up, I was only allowed to watch tv for 1 hour a day IF I finished all of my homework and schoolwork related things first.

realsocialskills said:

It’s not the same (although it has similar elements and I’m not a huge fan of the extent to which behavior modification techniques are used with typically developing children either.)

Here’s the difference: Most children actually should do their homework, and most children have interests other than television. Typically developing children are allowed to be interested in things, and supported in pursuing interests without them becoming behavior modification tools.

(Another difference: intense behavior modification is used on adults with developmental disabilities in a way that would be considered a human rights violation if done to typically developing adults.)

Using behavior modification tools for one or two things in a child’s life isn’t the same as doing it with everything in someone’s life. Intense behavior therapy is a violation on a level that it’s hard to describe.

Intense behavior therapy of the type I’m talking about typically involves:

  • Being surrounded by people who think that you’re broken, that all of your natural behavior is unacceptable, and that you need to be made to look normal in order to have any hope of a decent future
  • Having completely harmless things you do pathologized and modified (eg: having hand flapping or discussing your interests described as “a barrier to inclusion”)
  • Having those things conflated with things you do that actually *are* a problem. (eg: calling both head banging and hand flapping “sensory seeking behavior” and using the same reinforcers to eliminate both)
  • Being forced to stop doing things that are very important to you, by people who think that they are pointless and disgusting or “nonfunctional” (eg: using quotes from TV shows to communicate)
  • Being forced to do things that are completely arbitrary, over and over (eg: touching your nose or putting a blue ball in a red box)
  • Being forced to do things that are harmful to you, over and over (eg: maintaining eye contact even though it hurts and interferes with your ability to process information)
  • Having everything you care about being taken away and used to get compliance with your behavior program (eg: not being permitted to keep any of your toys in your room)

(Behavior therapy often also involves legitimate goals. That doesn’t make the methods acceptable, nor does it make the routine inclusion of illegitimate goals irrelevant.)

Here’s an explicit instruction from a behavior expert on how to figure out which reinforcers to use for autistic children:

Don’t assume that you know what a child with ASD likes. It is important to ask a child, observe a child or perform a preference assessment. When asking a child about reinforcers, remember that multiple reinforcement inventories can be found on the Internet.

You can also simply sit down with a child and ask them questions like “What do you like to do after school?” or “What’s your favorite food?”or “What toys do you like to play with?”

When observing a child, set up a controlled environment to include three distinct areas: food, toys, and sensory. Then allow the child somewhat free access to this environment.

Watch and record the area that the child goes to first. Record the specific items from this area that the child chooses. This item should be considered highly reinforcing to the child.

Continue this process until you have identified three to five items. Remember that simply looking at an item does not make it reinforcing, but actually playing with it or eating it would.

Notice how it doesn’t say anything about ethics, or about what it is and isn’t ok to restrict access to. This is about identifying what a child likes most, so that it can be taken away and used to get them to comply with a therapy program. (Here’s an example of a reinforcement inventory. Notice that some examples of possible reinforcers are: numbers, letters, and being read to).

People who are subjected to this kind of thing learn that it’s not safe to share interests, because they will be used against them. That’s why, if someone has a developmental disability, asking about interests is often an intimate personal question.

This isn’t like being required to do your homework before you’re allowed to watch TV.

It’s more like:

  • Not being allowed to go to the weekly meeting of the science club unless you’ve refrained from complaining about the difficulty of your English homework for the past week

Or, even further:

  • Not being allowed to join after school clubs because you’re required to have daily after school sessions of behavior therapy during that time
  • In those sessions, you’re required to practice making eye contact
  • And also required to practice talking about socially expected topics of conversation for people of your age and gender, so that you will fit in and make friends
  • You’re not allowed to talk about science or anything else you’re actually interested in
  • You earn tokens for complying with the therapy
  • If you earn enough tokens, you can occasionally cash them in for a science book
  • That’s the only way you ever get access to science books

Or even further:

Being a 15 year old interested in writing and:

  • Being in self-contained special ed on the grounds that you’re autistic, your speech is atypical, and you were physically aggressive when you were eleven
  • Having “readiness for inclusion” as a justification for your behavior plan
  • Having general education English class being used as a reinforcer for your behavior plan
  • Not being allowed to go to English class in the afternoon unless you’ve ~met your behavior targets~ in the morning
  • Not being allowed to write in the afternoon if you haven’t “earned” the “privilege” of going to class
  • eg: if you ask questions too often in the morning, you’re “talking out of turn” and not allowed to go to class or write in the afternoon
  • or if you move too much, you’re “having behaviors that interfere with inclusion”, and not allowed to go to class or write
  • or if you mention writing during your social skills lesson, you’re “perseverating” and not allowed to go to class or write

Or like: being four years old and not being allowed to have your teddy bear at bedtime unless you’ve earned 50 tokens and not lost them, and:

  • The only way to earn tokens is by playing in socially expected ways that are extremely dull to you, like:
  • Making pretend food in the play kitchen and offering it to adults with a smile, even though you have zero interest in doing so
  • You gain tokens for complying with adult instructions to hug them, touch your nose, or say arbitrary words within three seconds; you lose two for refusing or not doing so fast enough
  • You lose tokens for flapping your hands or lining up toys
  • You lose tokens for talking about your teddy bear or asking for it when you haven’t “earned” it
  • You lose tokens for looking upset or bored

Or, things like being two, and loving books, and:

  • Only having access to books during therapy sessions; never being allowed unscripted access to books
  • Adults read to you only when you’re complying with therapy instructions
  • They only read when you’ve pointed to a picture of a book to request it
  • You’re required to sit in a specific position during reading sessions. If you move out of it; the adult stops reading
  • If you rock back and forth; they stop reading
  • If you stop looking at the page; they stop reading
  • If you look at your hand; they stop reading
  • Adults interrupt the story to tell you to do arbitrary things like touch a picture or repeat a particular word. If you don’t; they close the book and stop reading.

Here are a few posts that show examples of the kind of thing I’m talking about:

Short version: Intense behavior therapy has some things in common with methods that are used with typically developing kids, but it’s not actually the same. Intense behavior therapy involves violation and a degree of control that is not considered legitimate with typically developing children.

Stimming to get back control over your body

Some autistic people (and some others) have trouble with voluntary control over their bodies. This can involve having trouble initiating movement, or having a lot of uncontrolled movement, or a combination of both.

This often gets called stimming, but it’s different from some of the other concepts stimming is used to mean. It’s not the same as flapping your hands because you’re excited, or rocking back and forth, or squeezing a stress ball because it feels nice or helps with focus.

This is one thing it can look like:

  • Wanting to read a book
  • Having developed the motor skills necessary to hold books and turn pages
  • Not currently being able to read the book because, right now, your arms won’t stop thrashing around and it’s hard to make contact with the book and when you do, your fingers won’t go where you want them and turn the pages
  • And maybe you end up throwing the book if you keep trying really hard to read it

For some people who get out of control like that, doing any sort of purposeful motion can help to regain control faster.

Some examples:

  • wadding up paper into a ball
  • drawing circles
  • typing scripted phrases or random nonsense
  • lining up objects
  • repeating a word over and over
  • or any number of other things
  • doing something familiar and purposeful can often help a lot

This isn’t universal among autistic people, and it’s not universal among people with movement disorders. It’s something that some people experience.

Sabotage disguised as acceptance

Acceptance is important. It’s one of the most crucial skills disabled people can develop. We have to learn to see ourselves as we are, and accurately

Acceptence is constantly, constantly undermined from a number of directions.

One of the most insidious things undermining acceptance is contact with people who speak in positive terms, but don’t believe in our abilities or agency even a little.

They will often call what they are doing acceptance, while at the same time doing everything in their power to convince us that disability means that we are fundamentally incapable of doing anything, that we shouldn’t try, and that we should just let them take over and run our lives.

This is fairly common in a certain kind of toxic parent community. (It’s also a common abuse dynamic in relationships between adults). Here’s part of the parent version:

Sometimes when parents say “My child is perfect the way she is,” what they really mean is “I don’t want my child to gain any skills that will enable her to separate from me, and I’m going to make sure she doesn’t.”

Some parents like this will give their disabled child anything but respect. For instance:

  • Some parents will give nonverbal children anything they point to
  • And will supply a lot of whatever their child expresses interest in
  • But no matter how old their child gets, they never stop treating them like a toddler. Even when they’re well into adulthood
  • And they don’t teach them about the world
  • Or talk to them about anything complex
  • Or try to find out what they think about anything more complicated than which objects they like
  • And won’t do anything to give them access to more complex communication
  • They will say that there’s no need for that, because their connection with their child is so deep that they understand everything they mean
  • That’s not true. Loving your child doesn’t make you a mindreader. Here’s a good post by a parent on the damage that approach does.
  • Even if parents infallibly knew what their child was thinking; kids need to be able to communicate with people other than their own parent
  • (Particularly since most children outlive their parents, and kids who can only communicate with their parents eventually end up unable to communicate with anyone)

Some parents will do anything for their disabled child — so long as it doesn’t run the risk of their child becoming more autonomous and less dependent on them. Eg:

  • Some parents prefer to carry disabled kids who are capable of learning how to walk
  • Some parents will put a lot of effort into making sure they’re always available to push their kid in an adaptive stroller, but adamantly refuse to get them a wheelchair they can propel themselves
  • Some parents will spend massive amounts of time putting their kids into complex outfits daily — and refuse to buy them any clothing that they can put on and take off independently

Some parents will allow their disabled child to do anything — except show consideration for others or develop reciprocal relationships not orchestrated by parent’s script. Eg:

  • They’ll allow their kid to boss people around at home, but they won’t let them go to any other kid’s house, ever, claiming that it’s somehow unsafe (even if their kid doesn’t have complex medical needs)
  • (Parents who do this often also do things like recruit children to come over and act like friends according to the parent’s script. For instance, by playing a game with their child and letting them win.)
  • Sometimes children who get overloaded hit people, are embarrassed, and want to apologize for hitting. Parents in this mindset tell them that it’s ok, that they couldn’t help it, and that they shouldn’t worry about it and definitely shouldn’t apologize.

Doing this kind of thing is not disability acceptance, even if the one doing it describes everything in flowery language. Sabotaging a child’s independence is not acceptance. Forcing a child into dependency is not acceptance. Destroying a child’s ability to engage in reciprocal relationships is not acceptance. Treating an adult as a child is not acceptance. Treating a disabled adult as a puppy or a plant is not love. That kind of stuff is just ableism.

People who say things like that aren’t accepting us as people. They’re saying that we’re not full people, and that they get spiritual satisfaction from having unpeople around.

We’re people. All the way down. Real acceptance is about seeing us as full human beings, acknowledging the impact disability has on us, and committing to finding ways to accommodate disability.

Short version: Treating disabled children and adults like puppies or toys is never ok, even if you call it acceptance and positivity.