Tag: tagging for relevance not restriction

Meaningful echolalia

Real Social Skills

Some people communicate mostly in memorized phrases or allusions to stories and events.

It’s actually pretty normal to communicate in phrases and allusions. I think most people communicate that way at least some of the time. For instance, a lot of people make Shakespeare references in situations that have little or nothing to do with literature. A lot of prose and interpersonal communication happens that way.

This is interpreted very differently for some people than others. People without disabilities who mostly communicate in literal language are taken much more seriously when they make allusions and quotes.

When a nondisabled person says “The lady doth protest too much, methinks”, it’s assumed that they’re communicating and that what they say is meaningful. They are usually understood. This is the case even if there are no ladies present and they’re obviously not talking about a lady.

Similarly, when a nondisabled person says something like “A horse! a horse! my kingdom for a horse!”, this is understood as meaning something even if they obviously do not have a kingdom and are known to hate horses.

When someone with a disability communicates in exactly the same way, their communication is often written off as meaningless. It’s often seen as sensory seeking, or stimming, or a persversation, and having no communicative content whatsoever. This kind of communication is often ignored, and also often seen as a problem behavior to be extinguished by a behavior plan.

This is in part because there’s a widespread belief that autistic people are all hyper-literal and only understand literal language. That’s true of *some* autistic people. But there are also autistic people who have the opposite problem. There are people who find it nearly impossible to use literal language to communicate, but who can readily make references and use literary phrases. (This is true for other kinds of cognitive disabilities as well; it’s not unique to autism.)

People who can only communicate in references deserve to have their communication taken seriously. So do people who find references much easier than literal languages. Everyone else is allowed to use references to communicate; people with disabilities have the right to do so as well.

Here’s an example of a situation in which communication is often misinterpreted. Imagine a girl named Sarah:

  • Sarah doesn’t say very many words reliably. She can usually say a few things like mom, food, want, home, and SpongeBob.
  • Sarah watches SpongeBob a lot
  • She wants you and other people in her life to watch it with her
  • She says a lot of phrases from SpongeBob
  • (Eg: “I’m ready!”, “One eternity later”, “SpongeBob, you and I both know you’re just using me as a distraction so you don’t have to write your essay”, “Why is it whenever I’m having fun it’s wrong?”, “I’m ugly and I’m proud!”)
  • Sometimes, the assumption is made that her repetitive phrases are preventing her from developing standard language
  • Or they might think that TV is preventing her from developing standard language and that her access to TV is limited
  • Or they might think that she’s perseverating on SpongeBob in a way that’s preventing learning
  • When maybe what’s going on is that SpongeBob is *teaching* her language and communicative concepts, and she’s trying to use them to communicate
  • If so, she should probably watch more TV, not less
  • And it’s really important for people in her life to listen to her
  • And understand the references she’s making and what they mean to her
  • (Watching the shows with her is probably an important part of that; showing her other shows might be too)
  • If you want someone to communicate, you have to listen to them, even when their communication is unusual

A lot of this post about listening to people whose speech is unusual applies in this situation too.

Short version: Repeated phrases are often meaningful. Some people with disabilities communicate mostly in memorized phrases and references and allusions to stories and other things. Nondisabled people are taken seriously when they communicate this way. Disabled people who communicate in references should be taken just as seriously. (Even when they don’t communicate in literal language very often or at all).

Aftermaths of social skills lessons

Real Social Skills

Anonymous said to realsocialskills:

I’m autistic, I went to a group that was supposed to help me with autism-related issues, and they gave me some social skills advice that I honestly think was terrible. And the group was pretty terrible in general.

I ended up quitting for various other reasons, but it’s still sorta bugging me ‘cause what if they’re RIGHT.

The advice went like this: It’s okay to disagree with someone, but it’s never okay to explain WHY, because that’s pushing your opinion on them and that’s wrong.

realsocialskills said:

That rule is way too oversimplified to be useful. It’s true in some circumstances, and completely wrong in others — and completely useless at helping you to understand when it is and isn’t ok to contradict people.

The truth about social skills is that all rules are approximations at best. And often, as in this case, rules taught in social skills classes are completely useless and misleading.

Learning to be good at social interactions isn’t a matter of Learning the Rules; it’s a matter of learning to develop your judgement. Approximations and rules of thumb can help with this. They can’t replace the need to think for yourself and rely on your own judgement.

Social skills classes often teach people really destructive things about themselves and about social interaction. Here’s one way that can happen:

  • They tell you that autism (or whatever else) is preventing you from understanding social situations
  • They tell you that there are rules and that everyone else knows the rules naturally
  • They give you some simplistic rules and tell you to always follow them
  • The rules might sometimes be plausible-sounding or half-truths
  • Following the simplistic rules does not actually get the results they claim it does (because life is more complicated than that)
  • This can be really confusing
  • If you express this confusion to them, or say that it isn’t working, they attribute it to your autism and tell you to try harder or trust the process or something
  • They sometimes say this in a harsh way, they sometimes say it in a gentle or encouraging way. That difference is mostly aesthetic.
  • Either way, it amounts to the same pressure to believe them unconditionally and stop thinking for yourself

I suspect that something like that is going on here. The rule itself is useless. There’s no way to use it to tell whether or not it’s a good idea to explain your reasoning to someone you disagree with.

But it sounds just-plausible-enough to fuel self doubt, because there are some situations in which it really is mean to explain things to someone. (An example that’s been circulating on Tumblr recently: It’s ok to dislike Minions. It’s not ok to hassle kids about liking Minions or try to convince them that it’s bad and they shouldn’t like it.)

It can be hard to remember that these tiny kernels of truth aren’t actually meaningful. But they’re not. Kernels of truth in a simplistic rule don’t make it useful — and they don’t make the people pushing simplistic rules right.

Also – people who are wrong aren’t always wrong about everything. They may have told you some things that were true. They may have told you some true things that you didn’t know. And they may have told you some true things that you *still* don’t know. That doesn’t mean that their overall approach was ok, and it doesn’t mean you should trust them or doubt yourself.

I think, push come to shove, you have to think for yourself and develop your own judgement about these things. And sometimes that will mean that you make social mistakes — but they will be *your* social mistakes, and you will learn from them. It’s ok for autistic people to make social mistakes. Everyone has to learn this stuff, not just us.

Short version: Social skills groups can really undermine your ability to trust your own judgement. They give you simplistic rules that are impossible to follow, then blame you when it doesn’t work. It’s not your fault if this happened to you, and it’s not your fault if you’re having trouble recovering.

Appearing to enjoy behavior modificiation is not meaningful

Real Social Skills

One common response to criticism of ABA is to claim that people subjected to it enjoy it:

  • “My child loves his therapist and asks to go to sessions!”
  • “All of my clients smile and have fun!”
  • “My ABA is play based!”

What people forget is that affect is a set of behaviors, and that behavior modification methods work as well on affective behaviors as they do on anything else:

  • You can reinforce people to look happy
  • You can reinforce people to praise therapy
  • It doesn’t have to be an explicit part of the behavior plan to happen
  • And it can keep happening even after you fade direct prompts or direct intentional reinforcers

ABA programs give the therapist massive power over the person. That power in itself can cause people to look happy, through a more subtle reinforcement mechanism than takes place on a behavior plan:

  • If you have power over someone in the way that behavior therapists do, they’re going to be highly motivated to please you
  • If they figure out that you want to believe that they are happy, they are very likely to act like they are
  • If you treat them better when they display the affect you want or praise you, they’re likely to act happy.
  • It doesn’t mean they’re actually happy
  • Or that what you’re doing is good for them

(Also, affect often is an explicit part of someone’s behavior plan. It is not at all uncommon for ABA programs to involve actively ignoring distress and withholding attention and rewards until someone looks happy. It is not at all uncommon for ABA programs to involve teaching people to smile, to hug, or to otherwise do things that would out-of-context indicate happiness, enjoyment, or affection. It doesn’t have the same meaning if it’s prompted or trained.)

Also, programs based on positive reinforcement involving controlling someone’s access to stuff they care about:

  • The first step in a program based on positive reinforcement is to find out what someone most enjoys or cares about
  • (This is called a preference assessment or a reinforcement inventory. Here’s an example.)
  • And then making sure they have no access (or limited access) to those things outside of sessions or other situations in which someone is actively reinforcing them to do something
  • Of course if someone’s only access to everything important to them happens in sessions they will ask for sessions
  • That doesn’t mean they like the fact that someone has that level of power over them
  • (No one likes being manipulated that way.)
  • That doesn’t mean they like the things that the therapist makes them do
  • That doesn’t mean the power dynamic is harmless
  • That doesn’t mean ABA is a good approach to teaching

People who can’t say no, can’t say yes meaningfully. Looking happy isn’t meaningful if you’re rewarded for affecting happiness and punished for looking visibly distressed. Making the best of a bad situation isn’t consent.

You don’t have to earn support with a diagnosis

Real Social Skills

If you were hurt and you’re struggling to cope with the aftermath, that matters. It’s ok to be struggling. It’s ok to need support.

You don’t have to earn support with a diagnosis of something trauma related. You don’t even have to fit diagnostic criteria for a mental health condition to be worthy of support.

Getting hurt matters whether or not it results in PTSD or other diagnosable mental health conditions. There are a lot of different ways that people respond to trauma. In particular, not everyone who experiences abuse or other trauma develops PTSD. It’s ok to want support and to talk to other people whose struggles are similar to yours, whether or not your experience involves PTSD.

It’s also ok if the thing that hurt you wasn’t abuse, or if you aren’t sure whether you think it was abuse or not. It’s ok to need help and support even if it *wasn’t* abuse, or even if things are ambiguous, or even if what happened to you wasn’t anyone’s fault. Not all trauma is the result of abuse. Not all trauma is anyone’s fault. You don’t have to earn support by fitting a particular narrative. You don’t have to earn support by being ideologically or politically useful, either. You matter, it matters that you got hurt, and it’s ok to want help sorting things out.

It’s also ok to relate to and benefit from things that match your experiences partly, but not entirely. (Eg: it’s ok if something written about homophobic bullying helps you to deal with the medical care you experienced in the aftermath of a car crash; it’s ok if something written for people with intellectual disabilities helps you to cope with being the target of transphobic bullying. It’s also ok to use a type of therapy that was initially developed or is usually used to address a different problem than the one you have.)

All of this stuff can be hard to sort out. It’s ok to be struggling. It’s ok to seek help and support where you can find it. You matter, and your experiences matter.

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.