Tag: actuallydd

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.

You are not your child’s voice

Real Social Skills

You are not your child’s voice. Even if they can’t speak. Even if you understand some of their communication. Even if you fight hard battles to get others to respect and support them.

Even if you need to say things on their behalf that they’re not able to say. Even if you’re currently the only effective advocate they have.

No matter how much you care about your child, no matter how much you get right, you’re not them. They have a perspective of their own, and they disagree with you on some things. (Because they’re people, and no two people agree on everything.)

You are not your child’s voice. You can only speak from your own perspective. You are not them. And you’ll be a more effective and respectful advocate if you keep this in mind.

Doing what you must and feeling like you’re faking

Real Social Skills

Content note: This post is about the broad (inaccurate) perception that people with disabilities are faking, and ways that forces some people with disabilities to partially misrepresent the exact nature of their disability. Proceed with caution. 

Some people without disabilities believe that there are massive numbers of people faking disability, and that they must be caught and stopped. People who believe this usually don’t know very much about what disability actually looks like. They tend to assume that anyone with a disability who has non-stereotypical abilities is faking their disability.

Real disability often doesn’t look like stereotypical disability. For instance, many wheelchair users can walk, and many people who have service dogs can read, and many people have different abilities on different days depending on their energy and pain levels. This doesn’t mean that they are faking. It just means that their combination of abilities and disabilities don’t look like media tropes, because they are real people.

People with non-stereotypical disabilities can be in a very difficult place when dealing with people who think this way. It’s a pervasive problem, and people with a misplaced dedication to rooting out fakers often have a lot of destructive power over people who need disability-related support.

Being thought of as faking can mean that you lose accommodations. It can mean that you lose services that you need in order to survive. It can mean you get harassed. It can mean people are violent.

Sometimes, people with disabilities have no realistic option other than to allow people to believe that they fit these stereotypes:

Eg:

  • On a college campus, every dorm except one is completely inaccessible.
  • The main entrance to the partially accessible dorm has stairs
  • There is an accessible entrance for employees and residents with disabilities, but it’s always locked
  • In order to get a key, you have to convince Fred the building manager that you need one
  • Fred is very suspicious of disability claims, and is constantly trying to catch people faking disability
  • Fred believes that anyone using a wheelchair who can walk, stand, or even move their legs, is a faker who needs to be called out and prevented from using accessibility resources (if you don’t know why he’s wrong, read this post)
  • Wheelchair users who need access to that building are careful to give Fred the impression that they are completely unable to walk or stand. They never stand in front of him, or in a place where he might turn up unexpected. They carefully avoid referencing their ability to stand to anyone who might repeat it to Fred.
  • They may even have to outright lie about this in order to prevent Fred from taking away their access to the only door they can use. (eg: If Fred asks them directly, or rants about fakers, or makes them fill out an intrusive form).

More generally:

  • Many, many people have strong attachments to stereotypical ideas about how disability works
  • They tend to think that people who don’t fit those stereotypes are faking disability
  • Most people with disabilities don’t fit disability stereotypes particularly well
  • It’s often dangerous for people with disabilities to be perceived as faking it
  • That’s a hard situation, because:
  • There may be times when you know that if you describe your abilities and access needs completely accurately, people are likely to think that you are faking
  • But if you somewhat misrepresent your abilities in a way that fits the stereotype, then they’ll believe you about your real access needs
  • Which can put you into the awkward position of having to choose between representing the nature of your disability fully accurately and being thought of as faking, or allowing people to inaccurately believe that you fit a stereotype and being believed
  • That’s degrading on a level it’s hard to understand if you haven’t experienced it
  • It’s also a common experience among people with disabilities, and if that’s what you’re dealing with, it’s not your fault.

Some additional examples:

  • Some people who can write a little bit by hand are careful not to write in front of most people, so they they will not be assumed to be capable of the kind of writing that is completely impossible for them
  • Some people who are not autistic but have similar support needs due to less well-known conditions end up with an inaccurate autism diagnosis in order to gain access to services that they absolutely need in order to access education or to survive
  • Some people with both physical and cognitive disabilities allow others to assume that they are more physically disabled than they really are as a way of getting their cognitive access needs met without having to face certain kinds of cognitive ableism
  • Some people who can speak only a few words are careful to avoid speaking in front of most people, lest someone decide to take away the communication system they need to communicate things that can’t be expressed in their few spoken words

If you have a disability and you are not free to describe it fully accurately lest you lose accommodations, lose services, or face frightening harassment, know that you are not alone. A lot of people with disabilities experience this at some point or other. It’s humiliating and corrosive to go through, and it may make you feel like you are faking or that your needs are imaginary. It helps to remember that this is not actually your fault.

You are not faking, and your needs matter. You are a real person with a real disability doing the best you can in a hostile world. You are not alone, and it helps to remember that. There are other people with disabilities who are there, or who have been there, who understand that struggle.

Short version: People with disabilities are often forced to pretend to meet stereotypes in order to get their very real needs met. This is humiliating and degrading. If you’re dealing with that, it’s not your fault and you’re not alone.

Backup communication methods

Real Social Skills

A reader asked:

I find it very difficult to communicate myself verbally sometimes, to the point where I get frustrated and actually cry. It’s like, I can’t find the right words quick enough and it all comes out in jumbles. How can I improve my social skills when it comes to speaking?

realsocialskills said:

I think I’m going to write a few posts about this, because there are a lot of things that can help. But in this post, I’m going to talk about backup methods of communication:

For many people for whom speech is unreliable, having another method of communication to fall back on is gamechanging:

  • Speech isn’t the most important thing
  • Knowing that you will be able to communicate is the important thing
  • If fear and frustration is a reason that speech becomes difficult for you, knowing that you will definitely be able to communicate might in itself improve your ability to speak

Having a backup method doesn’t mean you have to use it all the time:

  • You might get stuck at one point in a conversation, type a bit, then resume speaking

Some possible backups:

Pen and paper:

  • If handwriting is reliable for you, it might help to carry around a pen and paper
  • That can allow you to write instead of speaking
  • Or to write a few words to unstick yourself
  • The advantages of this is that it’s cheap, low-tech, and readily available
  • (And most people have used paper to pass notes in a situation where they didn’t want to speak, eg: in a class, so it might not even look that odd)
  • You can also use this to draw diagrams or drawings illustrating a point. (even if it’s not a point that’s usually illustrated that way.) Having a non-words-based way of explaining things can help a lot.

An iPad (even without any special apps):

  • If you have an iPad, it might be worth making a point of carrying it with you all the time
  • You can take an iPad out relatively quickly and type on it just in the Notes app
  • (I do this)
  • You can even do text-to-speech this way. If you go to the general settings, then accessibility options, you can turn on text to speech. There are voices for a lot of languages; not just English.

You can also use iPads, paper, and computers as a stealth form of communication support:

  • If you pretend you’re taking notes, people generally won’t question it
  • You can then type out many of your responses before you say them
  • That can separate the process of figuring out what to say from the physical act of saying it
  • That can make speech far more possible for some people
  • (I do this more or less constantly in classes, seminars, discussion groups and certain kinds of meetings).

An iPad with decided communication apps:

  • There are a lot of dedicated communication apps for iPads (most of the good ones are expensive).
  • If part of your problem is that you lose words or forget the kinds of things that it’s possible to say, a communication app might help
  • Proloquo2Go has a lot of flexibility and good symbol support. If you have trouble with words and need symbols to remind you, it might be  a good option.
  • You can make dedicated pages for situation in which you tend to have trouble communicating.
  • Making the pages also might in itself help you to map out things you can say in various situations, even if you aren’t able to use them directly.
  • Speak4Yourself isn’t very flexible at all, but it has icons arranged in a way that’s well thought-out. It’s designed to work with muscle memory, having the words in the same place all the time so that your hands remember where you are. If you sometimes need help even with simple words and don’t need specialized pages, it might be a very cognitively user-friendly option.
  • Proloquo4Text is a text-based AAC app. It can store phrases in categories to access quickly, and has very high-quality word prediction. You can also make the display text very large if you’d rather show your screen than use a computer voice.

Short version: If you have trouble with speech and get overloaded, it’s a good idea to have a backup communication method. Scroll up for some concrete suggestions.

On stimming in class

Real Social Skills
alwaysatrombonist asked:

Do you know of any quiet or discrete fidget/stim toys? I find that I need to fidget in my school discussion group to keep from getting super anxious, but if I play with a hairband under the table or doodle then people notice. Most of the fidget toys I find online are colourful, which I don’t want because people will see. I will try a stress ball, but I think that my fingers need to be doing things. Thank you 🙂

realsocialskills said:

A couple of thoughts:

There probably aren’t many ways to stim that are completely undetectable. Some things I can think of that might be harder to detect than some others:

  • Rocking back and forth subtly
  • Chewing gum
  • Using typing as a stim (eg: typing out scripts or words you like over and over)
  • Using fidget jewelry .

Also, knitting and crocheting are not discreet at all, but they are often socially accepted in classes or group conversations. Depending on your particular group, that might be an option.

Another thought: maybe it’s ok if people notice:

  • Stimming isn’t necessarily as dangerous as it feels
  • Sometimes it’s okay to stim openly. Sometimes nothing awful happens
  • And sometimes people react badly, but in ways that are easier to put up with than the stress of suppressing stims
  • Stimming openly and conspicuously is not the right choice for everyone
  • But it’s probably the right choice for more people than realize it
  • So it might be worth reconsidering whether hiding your stims is the right choice
  • Or it might not be. You’re the best judge of this, and you have no obligation to stim visibly.

Life is not made of compelling philosophy

Real Social Skills

You don’t always have to have a coherent philosophical explanation for everything you do and care about.

Life is not made of philosophy. Philosophy can be a good thing, but it’s not a prerequisite.

You don’t have to have a coherent explanation of how God works for it to be ok to practice a religion or identify with a community. You don’t have to have a compelling explanation of where the universe came from in order to be an atheist or decide not to practice a religion.

You don’t have to have a deep and compelling theory about the nature of gender to know what your gender is. You don’t have to have a deep and compelling theory on where sexual orientation comes from and what it means in order to know which words you use to describe yourself, and who you are or aren’t interested in dating.

You don’t have to have a rigorous philosophical understanding of the mind and neurology to understand that you are disabled and that your cognitive experiences are different from most other people’s.

Or anything else. Your life is yours, and you get to have your own ideas about who you are and what you want.

You don’t have to have a compelling philosophy that convinces other people in order for it to be ok to know who you are and how you see the world. You don’t even have to have a coherent philosophy that convinces *you*.

Many philosophical questions that might be relevant to your life are unanswered, and unlikely to be answered in your lifetime. It’s ok if you want to work on solving them, but it’s also ok if you don’t. It is not a prerequisite, even if other people who use big abstract ideas want you to change.

Life is bigger than theories, and having a compelling theory is not a prerequisite for living, choosing, or caring about things. 

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