Stress makes everything harder

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.

Backup communication methods

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.

Being allowed to do hard things

Mel Baggs added to the post on “Some things about speech“:

I used to have a really hard time convincing people that sometimes lack of speech wasn’t overload or shutdown (or as psychiatry so inaccurately put it, ~anxiety~ or ~dissociation~), but rather just being myself.

And that far from always being a result of stress, speech caused me stress and lack of speech meant I was less stressed.

I knew the autism expert I saw was no expert when I heard her tell me that if we reduced my anxiety, I wouldn’t have to rely on my keyboard so much. Later on I found out she believed meltdowns and shutdowns were not sensory at all but rather ~off task behavior~, ~manipulation~, and ~tantrums~… And I lost my last shred of respect for her.

Also, even when it *is* the result of stress, that doesn’t necessarily mean that something is *wrong*.

Sometimes it just means that life is happening. Like, when I’m doing hard things, my speech gets worse. When I’m working a lot, I look more conspicuously autistic.

This doesn’t mean I shouldn’t work or study or do hard things. It’s important for us to be allowed to do hard things, and to be allowed to be stressed and have lives. Stress is part of life.

Sometimes people try to put us in bubbles where we don’t ever do anything hard or stressful. And take any autistic sign of stress as an indication that something is wrong. And that things need to be lighter and softer and less substantive.

Those places are not good and they are not understanding or accepting. They are hell on earth.

Some things about speech

Sometimes people have speech at some times, but not others.

Sometimes people have very fluid fluent speech sometimes, and choppy forced slow speech at other times.

Sometimes when people can’t speak, or have trouble speaking, it’s because something is wrong. Sometimes it’s because they’re stressed, or overloaded, or forgot how because they’re frozen and need help getting unfrozen. Or because they’ve pushed themselves too far and are just too exhausted to function.

But losing speech, or losing fluent speech, is not always like that. Being in a mode where speech is difficult or impossible is not always a sign that something is going wrong. For some people, that’s just a mode they can be in, sometimes.

It can mean they are prioritizing different things, putting more resources into thinking rather than speaking. It can mean they are in a more sensory mode rather than a WORDS WORDS WORDS mode. It can mean they’re interacting, and that it’s about presence and not conversation. Or any number of other things.

To make a somewhat flawed analogy: People don’t usually speak during movies. When people aren’t speaking during movies, it’s not because something is wrong. It’s because they’re doing a different thing.

It’s important to know that both of these things exist. That sometimes lack of speech or difficult speech means something is wrong, but sometimes it means something is right.

About speech abilities

Some people can speak easily.

Some people always have difficulty speaking.

Some people never speak at all.

Some people can speak, but at a cost that’s not worth it.

Some people are better off communicating in other ways.

Some people speak sometimes, and type other times.

Some people have words all the time; some don’t.

Some people can speak fluidly, but only on certain topics. (Just like how one can be fluent in some topics in a foreign language, but be unable to read the news).

Some people lose speech at certain levels of stress.

Some people rely on hand movements and stimming in order to find words.

Some people have a monotone and convey tone through motion.

Some people make a lot of mistakes with words, and rely heavily on tone to make themselves understood.

Some people rely heavily on scripts, and only sound normal when they stay on-script.

Some people use phrases from television.

Some people communicate by repeating themselves, and tend to be perceived as not communicating.

Some people say a lot of words they don’t understand, and are perceived as having meant them.

Some people substitute one word for another a lot, and don’t always realize it.

Some people can answer questions even when they’re having trouble initiating speech.

Some people who find speech easy sound odd.

Some people who find speech difficult sound normal.

You don’t really know how someone communicates until you’ve communicated with them substantially, and even then, you only know in the context you’ve communicated in. Appearances can be deceiving.

And it’s important to be aware that all of these things exist.