Tag: autism

Stimming to get back control over your body

Real Social Skills

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.

Autistic kids need to be able to talk about disability

Real Social Skills

Disabled kids need to be able to talk about disability. Difference isn’t a good enough word. Everyone’s different from everyone else in some way. Not everyone has a disability. People who have disabilities need to be able to talk about that, both in general and specific terms.

I’m writing this partly in response to comments I’ve seen on several good posts that have been circulating recently on why it’s important to tell autistic kids they’re autistic.

I’ve seen some parent responses that seem superficially positive, which actually miss the point:

  • “Yes, we told him about that. We told him it’s the thing that makes his brain different, and that it’s why he’s so smart.” or
  • “We told her that autism means she’s awesome!”
  • “We told him he just thinks a little differently.”

That’s not good enough, because it doesn’t address autism as a disability. Knowing the word “autism” only goes so far. Kids also need to be able to talk about disability in a nuanced way, without glossing over things.

Kids will know that there are difficult and painful aspects of being disabled whether or not you talk about it. You can’t protect children from that knowledge by refusing to talk about it; you just end up sending the message that they’re on their own in dealing with it.

Here are some other things autistic kids need to know, beyond the word autism (not an exhaustive list by any means):

The basic version:

  • Autism is a disability
  • It’s one of the reasons some things are really hard for you
  • It also comes with strengths
  • You’re not going to grow out of it. You *are* going to grow up.
  • You can do things that matter.
  • There are other kids and adults like you, and we’re going to help you meet some of them
  • Some people are prejudiced against people like you. It’s ok to be upset about this.
  • Some things are going to be different for you than they are for most other kids, in ways that might not be predictable.
  • It’s ok to have questions
  • It’s ok to feel however you feel about all of this
  • Your parents and other supportive adults are here for you, and will help you figure things out and get help when you need it

Some other, more complicated (and also not exhaustive) information:

And any number of other things.

Disability is complicated. Disability is something we spend our whole lives dealing with, and that we never stop learning about. This is not something you can cover with your child in one conversation When you talk to your kids about being disabled, it’s really important to let it be complicated, and to be honest about it being a long-term conversation. It’s important that they know that you can handle talking about it, and that it’s ok for them to have questions, feelings, and to need help figuring things out.

Short version: Telling your autistic kid that they are autistic isn’t enough. You also have to talk to them about disability.

It’s ok to watch the same clip over and over

Real Social Skills

I’ve seen a lot of parents express concern about their kid watching the same clips over and over on YouTube, or watching shows they’ve seen before over and over, or similar.

I think that a lot of people are under the impression that watching the same videos repeatedly is an inherently meaningless activity. It’s not.

Here are some purposes repeated video watching can serve:

Getting oriented:

  • Sometimes the world is very confusing
  • Going back to something familiar can make the world less confusing
  • It can also remind you of feelings that it is possible to have and ways that it is possible to express them
  • For some people, all of this is really important

Focusing or averting overload:

  • Noise can be really overloading or distracting for some people
  • So can silence
  • So can new things
  • Having a familiar video on can be a really effective way for some people to avert overload and/or stay focused
  • This is meaningful and important. It’s important to be able to be comfortable and think clearly.

Noticing new things

  • The video is the same every time, but the person watching it isn’t
  • When you watch it over and over, you see new things
  • It can be conceptual things like coming to interpret the story in a new way
  • Or sensory things like noticing sounds and colors that you never noticed before
  • This kind of repetition and examination is meaningful, and can be a great joy

Receptive and expressive language:

  • People who communicate by repeating words and phrases can get more words and phrases, and more meaning out of the phrases they have, by watching the same video over and over
  • Watching the same video over and over can also be really good for receptive language
  • It can be practice listening to things
  • The meaning stays the same, and watching it over and over can be a way, over time, come to understand the words in it better
  • This is also true of body language – in a video, you can watch the body language over and over and come to understand it
  • There’s also far less pressure to already understand. In interactions with people, you upset them if you don’t get it. Videos don’t need you to understand them – you can try as many times as you need to and take as much time as you need without anything bad happening.

Short version: It’s not cause for concern if a kid watches the same videos over and over. Adults do it too, and it serves a purpose. Watching the same things over and over can be valuable and important.

Autism is a disability

Real Social Skills

A reader asked:

You know, I follow this blog because I think it’s cool and although I don’t really read your advice posts, I can see they’re very respectful and well thought out. That aside, I want to ask: how do you feel about labeling autism as a disability?

realsocialskills said:

I feel very strongly that it is important to refer to autism as a disability. It’s not just a difference; it’s a particular kind of difference, and that kind of difference is called disability.

There are all kinds of things that most people take for granted that autistic people can’t do, or struggle with, or can only do intermittently. Autistic people face ableist discrimination in response to not being able to do those things, or being perceived as not being able to do those things.

We have all of that in common with people with any other kind of disability. Acknowledging that allows us to learn from and collaborate with one another. Denying that we’re disabled just isolates us.

I think that every single thing I’ve written about autism has been reblogged by someone with another kind of disability saying “I can relate to this too”. As a result, my writing has become increasingly cross-disability. We have a lot in common.

If we try to separate ourselves from other disabled people, we lose a lot. Overlapping disability communities have a lot in common, and a lot of built up tools for dealing with disability, dealing with discrimination, and supporting one another. If we admit that we’re disabled, we can be part of that. If we don’t, everything gets a lot harder.

Short version: I think that autism is a disability and that admitting that makes life a lot better for autistic people.

Stress makes everything harder

Real Social Skills

Autistic people are autistic all the time. Sometimes some difficulties fade into the background, then come back out again when someone is particularly stressed out. This is true across the board for sensory issues, communication issues, movement, and all kinds of other things. (This is also true for people with any other kind of disability).

The intermittent nature of some apparent difficulties can sometimes lead to them being misinterpreted as psychosomatic. They’re not. Everyone, autistic or not, has more trouble doing things that are hard for them when they’re experiencing significant stress. Some things are particularly hard for autistic people, and those things also get harder with stress.

This is how it actually works:

  • Doing the thing always takes a lot of effort
  • Putting in all that effort has become second nature
  • When you’re not exceptionally stressed, you might not notice the effort it takes consciously
  • When you *are* really stressed, you don’t have energy to do the thing in the ways you normally can
  • So you end up having more trouble than usual, and probably looking a lot more conspicuously disabled than usual

For instance, with motor issues:

  • For those of us with motor difficulties, moving smoothly and accurately takes more effort than it does for most people
  • This can become second nature, to the point that we don’t consciously notice how difficult it is
  • But it’s still there
  • And when you’re really stressed or overwhelmed, you may not have the energy to make yourself move accurately
  • So things you can normally do (eg: handwriting, not walking into walls, picking up objects, pouring water) might become awkward or impossible
  • That doesn’t mean you’re faking or somehow doing it on purpose
  • It just means that things are harder when you’re stressed

Or with sensory issues:

  • Living with sensory sensitivities means that a lot of things hurt
  • For the sake of doing things anyway, a lot of us build up a high pain tolerance
  • To the point that we may no longer consciously process things as pain even though they hurt
  • Ignoring pain takes a lot of energy
  • When we’re really stressed, we may not have the energy to ignore pain
  • And things we normally tolerate can be experienced as overloading or intolerably painful
  • That doesn’t mean we’re faking the pain to avoid something stressful, or that we’re somehow bringing it on ourselves.
  • It just means that everything is harder under stress, including tolerating pain

Or with communication:

  • Communication can be hard for a lot of us in varying ways
  • For some of us, being able to speak requires juggling a lot of things that are automatic for most people
  • Or being able to use words at all, including typing
  • For some of us, that’s true of understanding people when they talk to us
  • Or of knowing what words are at all
  • If someone can’t talk, understand or use words under stress, it doesn’t mean that they’re somehow faking it to avoid a difficult situation
  • It means that communication is hard, and stress makes everything harder

Short version: Stress makes everything harder. For people with disabilities, that includes disability-related things, including things that we don’t normally seem to have trouble with. Sometimes we’re wrongly assumed to be doing on purpose or faking to avoid a difficult situation; it should actually be seen as an involuntary, normal, and expected physiological response to stress.

“Attention seeking behaviors”

Real Social Skills

Autistic people and other people with cognitive disabilities are often interpreted as doing things for attention, whether or not that explanation is plausible.

For example:

  • Alice is autistic. She flaps her hands.
  • Hand flapping is part of Alice’s body language. She moves her hands to express a large range of thoughts and feelings, just like some people move their facial muscles to express a broad range of thoughts and feelings
  • Alice also sometimes flaps her hands to calm down when she is overloaded
  • Bernice is a behaviorist. She is distressed about the fact that Alice flaps her hands.
  • Whenever Alice flaps her hands, Bernice stares at her, and pays intense attention to the fact that she is flapping her hands
  • Bernice notices that every time Alice flaps her hands, Bernice pays attention to her
  • Bernice concludes that her attention is reinforcing Alice’s flapping behavior
  • Bernice concludes that Alice’s hand flapping is an attention-seeking behavior
  • Bernice puts Alice on a behavior plan based on ignoring her whenever she flaps her hands

Behaviorists and others make this mistake a lot. They very, very frequently assume that the fact that they are paying attention to something means that it is being done to get their attention. It doesn’t. It just means they’re paying attention.

Starting at someone whenever they do something doesn’t mean that they’re doing it because they like being stared at. It just means that you’re staring at them.

Short version: Stop calling everything attention seeking behavior. The fact that you’re paying attention to something doesn’t mean that someone is doing it because they want your attention. Not everything a person who has a developmental disability does is about you.

Why I oppose ABA as a method of instruction

Real Social Skills

Content warning: This is a post about ABA.

The primary reason I think ABA is irredeemable: ABA uses behavior modification as a primary method of instruction. I think that is inherently demeaning, counterproductive and dangerous.

ABA therapy relies on continuous extrinsic motivation, which means conditioning the person it’s being done to to comply with a lot of things that they’re actively unwilling to do for several hours a week over and over. It means making them do things that make no sense to them, over and over for many hours a week. That’s dangerous. It’s especially dangerous for people with disabilities who have complex communication needs.

It’s dangerous to make a kid do things that make no sense to them over and over and over while relying on extrinsic reinforcement. That teaches them that people in positions of power can do whatever they want to them, and that they have no right to protest or understand or influence things. ABA leaves people subject to it very, very vulnerable to abuse. Extreme conditioned obedience is dangerous, and it’s the most persistently reinforced behavior in ABA therapy. It’s generalized to other environments, and does not go away once therapy ends.

There’s also a few secondary problems with ABA, which are deeply embedded in the culture of the BACB:

The goals of therapy are often bad in themselves. Eg:

  • Teaching a kid not to stim
  • getting them to say a few words by rote
  • insisting on eye contact
  • making a kid spend hours and hours on facial expression flash cards at the expense of age appropriate academics

(For some good discussion of the issue of bad goals, see “Would You Accept this Behavior Towards a Non-Autistic Child?“ by an SLP specializing in AAC.)

The reinforcers are often unethical even when the goals have merit.

  • ABA depends on extrinsic motivation in order to make people subject to it cooperate.
  • This used to routinely involve pain and food deprivation, and sometimes still does.
  • (Neither is actually prohibited by the ethical guidelines of the BACB, although they do mildly discourage it).

Aversives have fallen somewhat out of favor in recent years, partly due to public outcry over them. That does not solve the problem, and a lot of common reinforcers are not much of an improvement.

ABA therapists talk about using things like bubbles, tickles and praise – but those things are not, in the long term, reliably sufficient to get anyone to comply with many hours a week of boring therapy.

What does work is taking everything a child (or adult) cares about, and making their access to it contingent on compliance in therapy. That’s an awful thing to do to someone, and it can seriously impair their ability to care about anything or communicate about anything. If you know that showing interest in something means it will be taken away, it’s going to be hard to show interest.

I think that’s inherent to this kind of therapy – ultimately, you have to either get intrinsic motivation or use really invasive extrinsic motivation. But even if that problem was solvable, I’d still be opposed to ABA as an educational method, because of the primary problem that behavior motivation is not defensible as a primary educational approach. Educational approaches should be about teaching, not about behavior modification.

Dealing with confusion in a costume store

Real Social Skills

Costume stores can be really overwhelming and difficult for some people. Here are some reasons, and some things that can help.

Sensory overload:

  • The most obvious problem is sensory overload
  • Costume stores tend to be loud and have a lot of strange sounds
  • Sometimes costume stores have spooky music or scream tracks, which can be scary as well as physically unpleasant
  • They also usually have bad lighting and often have strobe lights
  • Costume stores also usually crowded with loud people
  • They also might smell weird, especially if there are a lot of masks and makeup

Things that can help with sensory overload in a costume store:

  • Go at an unpopular time of day so it won’t be crowded
  • (And if the lights are a big problem, going during the day might be better than going at night)
  • Carry a stim toy to help manage overload
  • If you get overloaded and disoriented, holding onto something solid like a shelf for a few seconds can help to reorient yourself
  • Wear headphones or earbuds to block out the sounds or make them more tolerable
  • You might need to take a lot of breaks to be able to tolerate the store long enough to successfully buy something. That’s ok
  • If you’re helping someone else get a costume, it’s worth saying explicitly that it’s ok for them to take breaks if they need to
  • If you think they might need a break, it can be good to say that they look overwhelmed and ask if they want to go outside for a minute (but also take no for an answer. Sometimes we’re overloaded *and* want to keep going)

Unfamiliarity

  • Costume stores are temporary, and they change from year to year
  • So you aren’t familiar with the layout, which can be disorienting if you depend on memorization to navigate stores
  • Also, most people don’t buy costumes very often
  • (and aren’t necessarily familiar with what is sold in a costume store, even they buy costumes every year)
  • This can be disorienting if you rely heavily on routine to navigate stores and make purchasing decisions efficiently

Things that can help with unfamiliarity:

  • Think beforehand about what’s available in a costume store (eg: they usually have several different kinds of costumes in bags. They also have masks and wigs and hats. They also have facepaint and accessories.)
  • If you’re helping someone else, talk to them about the different kinds of things that costume stores have before you go
  • Sometimes you can look online to find the layout of the store
  • It might help to walk through the store once or twice together just to see what is there, without trying to make decisions right away
  • (Orienting is hard. Making unfamiliar decisions is hard. Doing both at once can be *really* hard).
  • If you’re planning to help someone else (especially if it’s a child) it can help to visit the costume store first yourself so that you know what is in the store and where the various things are
    (It’s easier to help someone else orient if you are already oriented)
  • You can look online to see which costumes are likely to be available this year
  • (You can also buy costumes online, but that runs the risk of ending up with something that’s not tolerable to wear.)
  • It might be better to buy costumes in a familiar store such as Target rather than an unfamiliar costume store. (That can also help with sensory overload since ordinary stores are less likely to have strobe lights, scream tracks, and extreme crowding)

Difficulty narrowing things down

  • There are a lot of options for costumes. It can be difficult to narrow down options
  • It can be especially difficult to narrow things down if you’re not sure what you want, but you know that you don’t like most of what you’re seeing
  • Or if you are having trouble processing what you’re seeing because of unfamiliarity, overload, or disorientation.

Some things that help with narrowing down options for someone else (I don’t really know any effective way to do this for yourself; there probably is one but I don’t know it):

An example of narrowing things down using categories:

  • You: Do you want to dress as a person or a thing?
  • Them: A person
  • You: A TV/movie character, a job, or something else?
  • Them: TV character
  • You: A superhero, or something else?
  • Them: Batman

Another example:

  • You: Do you want to look at the bag costumes, the makeup, or something else?
  • Them: Makeup
  • (then you walk together to the accessories area and they still look confused)
  • You: Do you want help narrowing it down, or do you just want to think about it?
  • Them: Think about it.
  • Them: I want cat makeup.
  • You: Do you also want a hat?
  • Them: No, a tail.

General advice for helping other people:

  • Don’t panic. It might be hard for someone to pick a costume no matter what you do
  • Helping means that you support them in ways that they welcome and find helpful
  • That doesn’t necessarily mean that buying a costume will be easy or comfortable for them
  • Things can be ok even if they’re hard or uncomfortable
  • If they don’t want to buy a costume in a costume store, that’s ok. If they want to do it even though it’s hard, that’s also ok.

It’s also possible to wear a costume without having to go to a costume store. Some other possibilities might be easier for some people.

 

Stimming is not just a coping mechanism

Real Social Skills

I see this defense of stimming a lot:

  • It’s wrong to train autistic people not to stim
  • They use it to compensate for overload
  • Or to focus
  • Or to compensate for other problems
  • Or to express distress

All of this is true. But it also misses the point. Stimming isn’t just a coping mechanism. It’s much more than that. Stimming is a positive part of autistic experience, not an unfortunate-but-functionally-important thing we have to do.

Imagine if facial expressions and tones of voice were considered wrong, and someone defended them this way:

  • It is wrong to teach children to adopt a flat affect
  • Children need to be able to frown
  • Children need to be able to indicate through the tone of their voice that something is wrong
  • Children need to be able to cry. That’s a way of coping with pain and overload

All of those things are true. But if that’s all defenders of tone and facial expression said, it would be horribly misleading. Body language and tones are more than that, and they are good.

Stimming is like that too.

  • Stimming is not just necessary. It is also natural, and good
  • Flapping in response to a nice texture is not fundamentally different from smiling in response to the smell of a flower
  • Rocking in response to someone saying something offensive is not fundamentally different from frowning in response to a slur
  • It is ok for autistic people to have autistic body language

People might not understand your body language

Real Social Skills

Body language that comes naturally to some autistic people can be completely invisible to most neurotypical people.

For example, many autistic people respond to questions by nodding their head very slightly. It can feel like a bigger movement than it actually is, and sometimes people don’t notice it. If you’re nodding and people are ignoring you, it might just be that they don’t understand your body language.

Similarly, neurotypical people don’t usually understand the range of things that flapping and various forms of stimming can mean. They tend to read it as distress or as annoying behavior. They don’t usually understand it as body language. Since they lack the skill to understand body language correctly, it can be worth telling them things explicitly.

For instance, if someone doesn’t understand the kind of flapping that means hello, it might be worth saying hello with your voice when you want to greet them.

Sometimes neurotypical people intentionally ignore autistic body language, but sometimes they just don’t understand it.