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