A behavior modification aftermath

Content note: This post is written with parents and professionals in mind. It’s about a common way that rewards-based behavior modification hurts people, and the importance of being aware of that effect in work with people who might be ABA survivors.

I’ve seen a lot of well-meaning people who are trying to fix special education and adult disability services say things like “you have to find out what they’re interested in and incorporate it.”

This can be good advice. It’s also important to realize that this is loaded, and that not all disabled people are going to be willing or able to show you what they’re interested in.

For people with disabilities, “what do you like?” can be a deeply intimate personal question. It can be very dangerous to let people know what you are interested in.

Autistic people (and others with intellectual and developmental disabilities) are often subjected to intense behavior modification. This is often aimed at silencing them, getting them to pretend to be non-autistic, or otherwise change in ways that deny fundamental things about who they are.

You have to take some pretty extreme methods to get someone to comply with that kind of behavior program. One traditional way is to use painful punishment like starvation and electric shock. These days, that’s considered distasteful, and most therapists prefer to use positive methods.

In practice, what that often means is that anything a disabled person expresses interest in will be taken away and used as a reinforcer for a behavior plan. The more they care about something, the more their access to it will be contingent with compliance with what powerful people in their life want.

Even if the thing they care about is something like math. Or books. Or access to fresh air. Or their teddy bear.

People subjected to this kind of thing learn quickly that when they express interest in something, it will probably be taken away.

And beyond that, they learn that when people know what you care about, they will use it to manipulate you into doing awful things to yourself. In many cases, this includes being manipulated into maintaining a grateful affect and praising the therapist.

When people have experienced this type of violation, sharing their interests with anyone is a big risk. Particularly if that person has power over them. Particularly if that person is a member of a professional culture that largely approves of what was done to them. (And if you’re a teacher, therapist, direct support professional, or similar, you have power over them and your professional culture approves of misusing it.)

It’s important to keep in mind that people you work with have every reason to believe that it is dangerous to tell you what they care about. They don’t know what you will do with that information, and have every reason to believe that you will use it against them. (Or that information they give you will get back to people who will do so.) It might take a long time before some people are willing to share their interests. Some people may never trust you. The way you teach and offer support needs to take this into account.

Short version: It’s important to be aware of the loaded nature of asking disabled people to express interest in things. It’s important to make space to incorporate interests; it’s also important to allow people to keep their interests private.

Finding things you can fix when things are really wrong

ischemgeek asked:

Advice on expressing sympathy and lending emotional support to a family member whose child may be facing a serious illness? Both for the “dunno for sure” phase and for the “know for sure either way” phase. Comforting is not my strong suit and halp plz because this can’t be fixed so soothing is only way to be helpful.

realsocialskills said:

This is the second part of my answer to this question. The first part was about emotional support. This part is about practical support.

I think that there are probably some things you can fix in this situation.

The problem of possible illness can’t be fixed. Secondary problems surrounding the situation *can* be fixed.

When a child is facing a serious illness, all kinds of practical things get complicated. Diagnosing and treating illness involves a lot of medical appointments, tests, insurance wrangling, and other complications. And it happens with no warning, when people are already busy with other things. They’re probably both physically and emotionally exhausted. They probably could use a lot of help.

Some possible problems that might be solveable:

Childcare:

  • If you live nearby and are comfortable babysitting, offering to watch their kids some could be really helpful
  • If they have other kids, someone has to watch them while they’re at medical appointments with the possibly-sick kid
  • Suddenly needing more childcare than you expected to need is a logistical nightmare, and it is very likely that they don’t have as much help as they need
  • Even if they only have the one child, more childcare would probably be helpful
  • The obligations of life don’t go away when a child gets sick, and there are likely many things they’re behind on that are hard to catch up on while caring for a child

Helping kids with homework:

  • If their kids go to school, they likely have a lot of weekly homework that they need adult support with
  • This can get very complicated if parents are suddenly very busy and emotionally exhausted
  • Even if you don’t live nearby, if you can be available for some homework help over email or Skype, that could take a *lot* of pressure off of the family.

Communicating and running interference:

  • When a kid gets sick, a lot of people want constant updates
  • This is generally exhausting and burdensome to the kid and the parents
  • Sometimes it helps to have a point person for updates and boundary-assertion
  • Or someone to run a CaringBridge page so they don’t have to
  • I don’t know if they’d want this or if you’d want to do this; some people find this helpful but I don’t know what they want or what your relationship with them is like

Helping them with the insurance company and other bureaucracy:

  • If they are in the US, an insurance company is probably being awful to them and refusing to pay for things
  • Or making things needlessly complicated and confusing
  • They also might need to apply for government or charitable assistance at some point
  • Which is hard to do when you’re overwhelmed and exhausted and have never done so before
  • If you’re good at navigating that kind of thing, you might be able to help them
  • Or you might be able to do research and find out things that can help them
  • Again, I don’t know if they’d want this kind of support from you or not. Some people do; some don’t

Money:

  • Illness is expensive no matter where you live, even under ideal circumstances
  • And unexpected major expenses make life really hard
  • If you are in a position to help them financially, it would probably make some things significantly easier for them
  • Money can’t fix the biggest problem, but it can go a long way towards fixing the secondary problems

Other general life logistics: There are a lot of things that get hard when there’s a crisis, that they might welcome help with:

  • Keeping their house clean
  • Cooking some food (or ordering them the occasional pizza)
  • Mowing the lawn if they have one
  • Getting groceries and supplies
  • Picking up prescriptions
  • Getting kids to and from school
  • Keeping their computers and network in good working order
  • Making sure bills get paid on time

These are the things I can think of offhand. I don’t know which, if any, it makes sense for you to do. I don’t know the extent to which your relationship with them makes help appropriate. I think it is likely that there are things that you could do to be materially helpful — and also important to realize that you don’t have to do all of them (and probably shouldn’t).

Short version: When someone’s facing a major life problem that you can’t solve, they’re generally also facing secondary problems that it’s possible to help them with. Scroll up for some specific suggestions.

Solidarity can be better than comfort

ischemgeek asked:

Advice on expressing sympathy and lending emotional support to a family member whose child may be facing a serious illness? Both for the “dunno for sure” phase and for the “know for sure either way” phase. Comforting is not my strong suit and halp plz because this can’t be fixed so soothing is only way to be helpful.

realsocialskills said:

So, I’m going to answer this in two parts. This post is about emotional support.

I think that most people who are facing emotionally devastating situations need solidarity more than they need comfort.

One way to show solidarity is to acknowledge what’s going on, and to let them feel however they feel about it. People in awful situations often face relentless pressure to try to have a ~positive attitude~ and not be upset. This is particularly true of child illness, particularly if the illness is life-threatening, particularly if it is cancer.

This positivity narrative pressures people to think that they can somehow fix things with the power of positive thinking, and that they will somehow ruin things if they get upset or have feelings that aren’t 100% hopeful at all times. That can make things a lot harder.

People often end up feeling a lot of pressure to put on a positive and hopeful face around people who care about them. They also often face pressure to be constantly trying not to be upset. They can end up spending a lot of emotional energy taking care of the needs of people who want to comfort them.

And in reality — people facing difficult situation are going to struggle and have complicated feelings. And, in this case: People who have reason to suspect that their child is seriously ill have every right to be upset and afraid. And the last thing they need is relentless pressure to think positive and feel hopeful.

Probably the best form of emotional support you can offer is to listen without trying to make them feel better. You can acknowledge what is going on, and be someone who they don’t have to gloss over things with. You can be there with them while they feel however they feel about it. You can be someone who listens to them respectfully.

Many people facing awful situations don’t have that, and having it can make a big difference.

I wrote a while back about the importance of acknowledging that sometimes things are terrible, and also about some practical methods of listening to someone who is facing a bad situation.

Short version: If someone is facing a bad situation, trying to comfort them often backfires. It often works better to focusing on listening to them and expressing solidarity.

“I don’t see you as disabled”

I think that most people with disabilities have heard many people say, “I don’t see you as disabled!” in a tone that implies that this is a compliment.

It’s a strange thing to say. It’s especially strange since they will say that about even the most conspicuously and stereotypically disabled people. It sounds like an obvious lie.

I’ve been realizing lately that some people who say things like that aren’t lying. They really *don’t* see us as disabled, because they’re mentally editing out the disability.

They sort the world into people they can respect, and people they can regard as significantly disabled. So if they respect someone, they mentally edit out the disability. They can see a person and they can see adaptive equipment, but they refuse to see the disability.

They assume that, since they respect you and see you as a real person, that you’re not *really* disabled. They think that you may have a condition, but that you would ~never let it define or limit you~. They think that you can overcome everything with the sheer power of determination and positive thinking. They think that ~the only disability in life is a bad attitude~, and that, since you don’t have a bad attitude, you can’t possibly be disabled in any significant way.

And in real life, disability always matters. As Stella Young said, “No amount of smiling at a flight of stairs has ever made it turn into a ramp. No amount of standing in the middle of a bookshelf and radiating a positive attitude is going to turn all those books into braille.” There will be times when things aren’t accessible. There will be things we can’t do. There will be times when disability suddenly becomes visible and undeniable.

When disability clearly and visibly matters, people who ~don’t see us as disabled~ tend to lash out. Because then, as they see it, we’re not upholding our end of the bargain. We’re supposed to be the kind of people who don’t let disability matter. And if we’re the kind of people who can’t or won’t ~overcome disability~, then they don’t know how to respect us. And things can get really bad really quickly.

Short version: When people say that they “don’t see you as disabled”, they’re not always lying or awkwardly trying to be police. Sometimes they mean it. When they mean it, it’s often for a frightening reason. Proceed with caution among people who sincerely refuse to see disability.

Disability acceptance for partners

Anonymous said to :

Hi, my boyfriend is autistic on the Aspergers spectrum and I don’t know what to do when he’s overloaded. I just really want to help him calm down again.

Is there any advice you can give me?

realsocialskills said:

There’s a lot of things that could be going on. I don’t know you or your boyfriend, so I can’t really tell you much that’s specific to your situation.

I think it’s possible that you may be taking too much responsibility for your boyfriend’s overload. If so, it would be better for both of you if you let it go a bit.

There’s a narrative in the media that’s common, and destructive, that goes like this:

  • Disabled person (usually a man) can’t function
  • He meets an amazing person (usually a woman), and they get involved romantically
  • Through the transformative power of love, he is healed
  • Then either he stops being disabled or his attitude changes in a way that means disability no longer matters in any significant way

Sometimes this goes along with another trope, “the only disability in life is a bad attitude”.

  • People who buy into that trope believe that disability only matters if they let it matter.
  • And they disability can be ~overcome~ by positive thinking and not being bitter.

For disabled people, this narrative pressures us to pretend that disability doesn’t matter. Or to make it stop mattering through sheer force of will. For people who love us, it creates pressure to fix everything and make disability irrelevant through the power of love and support. In real life, neither of those things work.

In real life, disability matters no matter what people think about it and no matter how much others love them. Having a good attitude can make life better; it can’t make disability irrelevant. Love can make life better; it can’t make disability irrelevant either. Disability goes deep, and it affects a lot of areas of life. And sometimes things are hard.

Part of being a good partner to an autistic person is accepting that autism is going to matter. No matter how wonderful you are, you’re not going to be able to stop autism from mattering.

I don’t know what’s going on with your boyfriend and his overload. I do know that, for many autistic people, overload is an inevitable fact of life. Sometimes, it’s the price of admission for doing certain things we care about. Overload is not always something you can prevent or fix. Sometimes the decisions get complicated.

Your boyfriend is the one who is responsible for figuring out how he wants to approach overload. He is the one who needs to decide which risks are worth taking, which are worth avoiding, and how he wants to handle it when he is overloaded. You can’t protect him from this.

You might be able to help with some of it some of the time. Many autistic people like certain kinds of support in dealing with overload, for instance:

  • Having someone else pay attention to signs of imminent overload and point them out
  • Being reminded that leaving is an option
  • Being reminded that it’s ok to be autistic in public and that they can stay if they want
  • Help leaving an overloading place
  • Being left alone and having someone else run interference to keep other people from trying to intervene
  • Having a stim toy handed to them
  • Knowing that people they’re with aren’t going to try to stop the overload and will leave them alone
  • Water
  • Help finding a quiet place to go
  • Being able to hold someone’s hand
  • And any number of other things

Note that many of these things are mutually exclusive. Autistic people have wildly different needs and preferences around handling overload. I don’t know what your boyfriend needs or wants; that’s for him to determine.

The only way to find out what your boyfriend wants you to do when he gets overloaded is to ask him, and to listen to what he says.

  • It’s worth having this conversation when he’s not overloaded and is able to communicate readily.
  • It’s also important to listen to what he says when he’s overloaded, even if it contradicts what he’s said before (unless he told you beforehand not to)
  • The question shouldn’t be “How can I calm you down?”, because that might not be possible or something he wants.
  • The question should be something like “When we’re together and you get overloaded, how do you want me to react?”
  • It’s ok if he doesn’t want to have an intimate discussion about overload, and it’s ok if he doesn’t want your help.
  • But you do need to know what he wants you to do in that situation, and so it’s ok and important to ask.

Short version: Autism acceptance is important for partners of autistic people too. You can’t fix everything or make autism stop mattering. Sometimes things are going to be hard for us no matter what you do. Whether we want help, and the kind of help we want, varies from person to person. If you want to know, it’s important to ask.

Maintaining privacy when people ask about a memorial object

Anonymous said to :

I have a rather specific social problem I was hoping you might help me with. One of my best friends committed suicide very recently, and I have a necklace with his name on it that I wear to remember him. Normally I wear it with the blank side facing out, but it does flip around, & people (who didn’t know him) have asked about it. I don’t want to outright lie, but this isn’t something a stranger needs to know.

Additional complication: this is still really raw, so sometimes the question hits wrong and I become visibly upset, which just makes the person more curious. How can I brush these well-intended remarks off as politely and quickly as I can, making it clear that I don’t want to talk about it?

realsocialskills said:

I wonder if it would work for you to say that it’s in memory of a friend without talking about the suicide?

Like, along these lines:

  • Them: That’s not your name, is it? Who is that?
  • You: Actually, it’s in memory of a close friend who died recently.

It might help to be explicit about how you want them to react. Most people are uncomfortable talking about death. Some people will be very worried about saying the wrong thing and will want to take cues from you.

If you want them to drop it, changing the subject helps. One way to change the subject is to talk about the reason you’re interacting with that person to begin with.

Eg: Say you’re at a conference.

  • Them: What does your necklace mean?
  • You: It’s kind of personal. It’s in memory of a friend who died recently. I’m trying to stay busy. I’m excited to be at this conference. What brings you here?

If that’s too much sharing, maybe you could say something like more vague like: “It’s a friendship necklace”, or “It’s to remember someone”, or “I’ve had that for a while”, “It’s in honor of someone”, and then follow it with an immediate subject change.

This sometimes takes a couple of repetitions of the subject change. Some people think that they’re supposed to find ways of getting you to talk about it, and some people are just nosey. If people are particularly persistent, you might need to say very bluntly that you don’t want to talk about it. (Some people might get annoyed at having their persistence rebuffed. If that happens, that’s their fault, not yours.)

Alternatively, what about making the necklace less visible? For instance, by wearing it under your clothes, or by putting your friend’s name in a locket instead of on the outside of a pendant? (I’m not assuming that this is a good idea — it may well not be; symbolism is complicated).

Women are not inherently safe

Sometimes people talk as though men are inherently dangerous, and imply that women are inherently safe.

Neither is true, because women are people, and people make choices.

Women can do anything that men can do. Including the bad things that men can do. Including abuse. Including violence. Women are people, and people can be dangerous.

It’s important to be able to acknowledge this. Women need to know that they have power, so that they can be careful how they use it.

People who have been hurt by women need to know that what happened to them matters, and that they are not alone.

When a class is harder than you expected

 asked:

My entire life English has been my thing – my best class, I even just started writing a novel. And AP Lang is kicking my butt up down and all around.

Advice on avoiding the soulcrushing feeling that I lost a large part of my identity to this class?

realsocialskills said:

I think it might help to remember that this class is not an ultimate test of whether you’re good at writing.

It’s one class. I don’t know why it’s kicking your butt. There are a lot of possibilities.

For instance:

New skills that don’t come naturally to you:

  • Sometimes students who are good at a particular subject expect that everything about it will always come naturally to them.
  • In the long run, that’s unlikely to be true.
  • No matter how good someone is at something, there will probably be things that are difficult, unnatural, and have a steep learning curve.
  • This can be scary the first time students experience it, particularly if they have a lot of identity hung up in being good at something.
  • Particularly if they’re young enough that their peer group might be made up of people who also haven’t experienced struggling with their strongest subject much before.
  • If that’s the issue, it might help to remember that this is normal. Everyone struggles with something related to their field in the long run. That’s ok.
  • And it also might help to remember that part of being great at something is learning how to do hard things
  • Most people who write seriously consider writing to be difficult.
  • Writing is probably going to be hard sometimes. Sometimes it’s going to feel like a miserable slog. It’s still worth doing. For a lot of writers, writing through the stuck places is a vital part of what makes good writing possible.

The class might be designed to kick your butt. Some classes are like that, eg:

  • Some teachers assign things that they know are barely possible for their students
  • The point of this is to push you hard to increase your skills dramatically over the semester
  • Teachers who do this tend to keep making the assignments harder as their students develop more skills
  • Your teacher may be assigning books they expect most or all of the students to find extremely difficult to read
  • Your teacher may be having you write in ways that they know will be very difficult
  • Or holding you to very high standards that they expect to be only barely possible for you to meet
  • Struggling with that kind of class doesn’t mean you’re bad at English
  • It means that you’re in a class where the teacher is pushing you really hard, and not giving you any chances to do anything comfortable
  • If this is a factor, it might help to remind yourself that it’s ok to struggle when you’re being asked to do difficult things

The grading standards might be more difficult than you’re used to:

  • Different teachers grade differently
  • In most classes, there’s a default grade you get if you do all the assignments more-or-less competently. In some classes, that’s an A. In others, it’s a B. In others, it’s a C.
  • If you’re having to work much harder for grades than you’re used to, it may well just mean that the scale is different.
  • (Even if it’s a teacher you’ve had before; many teachers grade AP classes more stringently).

Your classmates might be different than you’re used to:

  • Sometimes students are used to being much better than their peers at a subject
  • Then they take an advanced class, and everyone else is good at the subject too
  • Then they’re not dramatically better at it anymore, and feel like they must not be good at it after all
  • This is also common among people who are used to being at the top of their class in high school, then go on to an elite school and have peers who were also at the top of their classes
  • If this is what’s going on, it might help to try to focus on doing things well rather than doing them better than your peers
  • And to remember that if you’re around others who are strong in your subject, you can learn from them as well as the teacher
  • You don’t have to dramatically outperform everyone else for your skills to be real
  • Writing well and reading seriously matter as ends in themselves, whatever test scores say.

The class might suck:

  • Some classes are terrible and make students feel terrible.
  • The teacher might be giving you unreasonable or unclear assignments
  • The assigned books might be excruciatingly dull.
  • The writing assignments might be pointless busywork that makes you hate writing.
  • The teacher might be mean.
  • Your classmates might be mean.
  • You might have access needs that the teacher isn’t meeting.
  • Or any number of other ways classes can suck.
  • Most people who go to school for a long time deal with classes that suck sometimes.
  • If that’s the problem, it might help to keep in mind that bad classes don’t mean you’re bad, and that the class will end.

You might have a lot of other stuff going on.

  • High school is hard on a number of levels for a lot of people.
  • Particularly the last two years, in which there can be a lot of pressure to believe that your future will be ruined if you don’t push yourself superhumanly hard.
  • Life in general can be hard for all kinds of reasons.
  • Sometimes when stuff is really hard, people find things difficult that they normally are able to do easily.

Mental or physical health:

  • If you have a mental or physical health condition, that can make school harder.
  • Some mental and physical health conditions tend to start in adolescence.
  • Long-standing conditions often also change or develop complications in adolescence.
  • Health conditions in adolescence are not always diagnosed quickly or treated appropriately.
  • Even when things are managed well, they still have to be managed, and that can still complicate things a lot
  • And that’s not always acknowledged, particularly when people want to reassure you that your brain is fine and you are totally mentally normal
  • The reality is that mental and physical health problems, as well as treatment, tend to make school harder
  • It can help to remember that it’s not your fault that dealing with health is hard and takes time and can suck in other ways and makes things other than health hard sometimes.
  • Or, as one of my friends once said to me, “it turns out that brains care more about oxygen than they do about academics.”

Disability issues:

  • Sometimes students with disabilities start needing academic accommodations when their classes get harder.
  • For instance, someone who could take notes by hand in an easy class might need a computer to take notes in a hard class.
  • Someone with dyslexia who can read 20 pages a week of standard print might need to use a screenreader for a class that requires 120 pages a week.
  • When students haven’t needed accommodations before, or haven’t needed them in a while, it doesn’t always occur to anyone that they might need them now
  • (Particularly if they were pushed really hard to learn to do something in the standard way, and were able to do so for a few years before classes got harder).
  • If you have a disability or suspect that you might, it’s worth considering whether you would benefit from modifications or support.

And in general: There are any number of reasons this class could be hard. This class is not a test of whether you are good at English, whether you are good at writing, or whether you should write a novel. If you want to write, you can do that, and do it well, no matter what happens in this class.

Short version: A lot of things can make classes hard, even in subjects you’re used to being good at. Those classes aren’t tests of whether you’re good at the subject, or whether you can keep doing the things you’re interested in. They’re just classes. It’s ok to do hard things.

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.