actuallyautistic

We're autistic, we're human, get used to it

Some dehumanizing descriptions of autism are negative. For example, some people believe that we are incapable of love, or incapable of imagination, or incapable of understanding anything of importance.

Some dehumanizing descriptions of autism are positive. For instance, some people believe that we are incapable of lying, incapable of being manipulative, and that we always say exactly what we mean.

Autism doesn’t work that way. We are fully human, for better and for worse. We are fallible. We make communication mistakes. We don’t always know what we mean, and we don’t always express ourselves clearly. For instance, sometimes we say things that feel direct but that are actually very confusing. That’s human.

We are capable of treating others well, and we are capable of treating others badly. We are capable of caring about others, and we are capable of indifference. We are capable of being kind, and we are capable of being cruel.

Autism means having disabilities that can affect how we communicate, how we move, and how we understand things. Autism doesn’t make us better than other people, and it doesn’t make us worse. We’re not subhuman, and we’re not superhuman. We’re just people.

When it’s too hot for weighted blankets?

Anonymous asked

Spending a lot of time with a blanket wrapped around me, and/or under weighted blankets helps me to reduce the intensity of my sensory overload difficulties, but as the weather gets warmer this is harder for me to do because I get overheated after even a few minutes. Any advice or suggestions of ways that other people have dealt with this kind of issue? I’ve been using a small weighted wrap around my shoulders during the day, but it doesn’t help as much as being enclosed in a blanket does.

realsocialskills said:

I have a few thoughts. I am hoping that others will as well.

A different kind of weighted blanket:

  • There are several kinds of weighted blankets, and a lot of differences affect heat.
  • It matters what the fabric is, and it matters what the filling is.
  • There are various things weighted blankets may be filled with. The coolest (least insulating) material I’m aware of is plastic pellets.
  • If your blanket is stuffed with something else, trying a plastic-pellets-based blanket might work better for you.
  • (Especially if the blanket you have now is filled with sand).
  • Similarly, some blankets have padding like a regular blanket, and some just have the weighted filling.
  • If your blanket also has regular-blanket-stuffing, it will be at least as hot as a regular blanket. 
  • So if you have a padded weighted blanket, it might be worth trying a weight-only weighted blanket.
  • It also matters what the fabric is. If the fabric is light and breathable, the blanket won’t heat you up as much.
  • (I’ve seen some school-or-institutional plastic weighted blankets for sale — those could be *really* hot and sticky since there’s not much air flow).
  • If your blanket is heavy denim or flannel or something, it might be worth trying something with lighter weight cotton. The weight can come from the pellets inside.
  • tl;dr The least-hot kind of weighted blanket is one made of lighter-weight cotton on the outside, plastic pellets on the inside, and no blanket padding that normal blankets have.

A sheet:

  • If you like being enclosed, a sheet might work as well as a blanket.
  • A lightweight sheet is much less likely to overheat you. 
  • It’s also easier to carry around than something weighted.
  • (Things like Body Sox might also work; I’m not sure if anyone’s making them in adult sizes though.)

Tight-fitting clothing:

  • Some people who like the deep pressure of weighted blankets also like the pressure of tight clothing.
  • Some people like to wear tight-fitting undershirts or other undergarments for similar reasons. (which has the advantage of not being conspicuous)

Switching to a movement-based strategy:

  • For some people, movement works just as well or better than weight
  • One reason some people like weighted blankets is that they can give good proprioceptive input (the sense of knowing where your body is)
  • If a weighted blanket is helping you to feel your body, moving might work just as well or better. 
  • For instance, rocking might help.
  • Doesn’t work for everyone, but it does work very well for some people.

Doing other things to cool yourself or your environment:

  • It may be easier to change the temperature than to change your sensory strategy.
  • So, here are some possible ways you might cool off:
  • Moving to the coolest room in your house
  • Closing the blinds so the room won’t end up getting as much heat from light
  • Turning on air conditioning if you can afford it
  • Wrapping an ice pack in a towel or something and having it under the blanket with you
  • Getting a fan if you don’t have one
  • Or a bigger fan if you do have one
  • Making sure the fan’s blowing directly at you when you’re under your blankets
  • If you have long hair, cutting it shorter might make you less overheated
  • If you’re wearing clothing made out of heavy fabric, wearing lighter fabric can help
  • Hats also trap a lot of heat. Not wearing a hat, or wearing a lighter hat, can cool you off.
  • Drinking cold beverages might help too
  • Cooking with an oven will really heat up your living area in a way that takes a while to disperse. Cooking with a stovetop, microwave, or toaster oven doesn’t raise the temperature like that.  
  • There are a lot of other strategies I don’t know or am not remembering
  • tl;dr There might be ways to cool off yourself or your environment enough that you can keep using your blanket without overheating

Anyway, that’s what I can think of in terms of what you might do if you find that using your weighted blanket doesn’t work when it’s hot. You can try a less-insulating kind of weighted blanket. Or using a sheet instead of a blanket. Or wearing tight fitting clothing. Or switching to a movement-based strategy (can work if you’re using weighted blankets for proprioceptive input). Or doing other things to cool off yourself or your environment so you can go back to using your weighted blanket.

I’m sure there are a lot of other options I’m not thinking of — anyone want to weigh in? What do you do when it’s too hot for your weighted blanket?

Question about autistics learning ASL

mellopetitone:

prosthetical:

lysikan:

m79point7:

realsocialskills:

inthedreamer001 said to realsocialskills:

I am considering learning ASL, and I recently shadowed a local class. While I like the class overall, the teacher kept saying to the students “eyes to eyes, not eyes to hands” to prompt them to make eye contact while speaking ASL. Is this a universal ASL thing? If so, are there exceptions made in the autistic/neurodivergent community? Thanks!

realsocialskills said:

I don’t know enough about ASL and Deaf culture to give you a good answer to this. I’m posting this in hopes that someone who knows more than I do will weigh in.

There are two things I know that might be relevant here:

Thing #1: Sometimes there are competing access needs. Sometimes there’s a conflict between what one group needs and what another group needs. This is often not anyone’s fault, and negotiating it can be very complicated. Sometimes there’s no easy or short term solution. 

Thing #2: There are important differences between how facial expressions work in ASL (and other signed languages) vs English (and other spoken languages.) Facial expressions are much more important in ASL than they are in English. 

In spoken language, most of the information is communicated by sound. Most people who can hear can understand all or most of what someone is saying without looking at them. (Which is a reason that it’s possible to understand podcasts and radio programs.)

In spoken language, eye contact isn’t that important. You can communicate everything important without looking at someone’s face. (Unless they lipread and need you to be facing them so they can see your lips clearly.). Eye contact is a popular way to show respect, to show that you’re paying attention to someone, or to show that you’re speaking to them. There are other ways of communicating all of that. 

ASL and other signed languages are different. Facial expressions mean a lot more, because ASL is an entirely visual language. Some important Information that is communicated through sounds in English is communicated through facial expressions in ASL. If you don’t look at faces, you miss a lot. (Much more than you’d miss in English.)

I don’t know what that means about autistic and other neurodivergent signers. I suspect that for some autistic people, looking at faces in ASL might be possible in a way that looking at faces in English isn’t. (Because maybe it just feels like language and not the intrusive eye contact thing.). But I don’t actually know. I also don’t know how the Deaf autistic and otherwise neurodivergent community handles this. 

Does anyone who is more familiar with ASL and Deaf culture want to weigh in? How does signing and participation in Deaf culture work for autistic-and-similar people who have cognitive trouble with eye contact and looking at faces?

m79point7 said:

ug. not enough room in the reply.  let’s try this again

Eye contact is important in ASL, however, I do not think this should stop ANYONE from learning ASL for a couple of reasons:

1) In my experience, the Deaf community is a lot more open to accommodations than the NT, hearing world.  

2) If you can handle looking at someone’s nose or mouth, instead of directly in their eyes, that is close enough that the other person can easily see your eyes and your facial expression.

Again - this is coming from a hearing person, so it is not ‘insider info’ from the Deaf community, just my humble experience and thoughts.

I would encourage anyone who is interested to learn ASL!  It can be a real help when you can’t talk for whatever reason, and it gives you another way to express yourself.  It also opens up a whole new community and culture full of some really awesome people!  And it is fun!  ASL lets you talk to a friend across a room, through a window, underwater, or with your mouth full!

If possible, learn ASL from someone who is Deaf,a s learning any language from a native user of the language is always a much better way to learn.  Books and videos can only get you so far.  

I use ASL without eye contact. It limits me a lot in what I can say or how I can say it, though.

prosthetical said: @goldenheartedrose @mellopetitone

mellopetitone said:

I’m HoH, autistic, and learning ASL.

Eye contact is the usual way the concept is expressed but you don’t need actual eye contact. In ASL is important to look at a person’s face but you don’t need direct eye contact and more than you do with speaking. You must look at someone’s face but you can look at their mouth or forehead or alternative to look at their hands.

Expression is important, but I know it’s a big struggle for many people to make visible enough expressions. If you don’t emote much, your signing won’t be as interesting, like monotone in spoken language, but you can get across your meaning, though it may require extra signing to make explicit what would be communicated in an expression.

Reading expressions is wonderful for me in ASL. Native signers are so emotive that a lot of understanding comes just from emotion, even if you only recognize a few signs. It’s not like spoken English where I struggle to recognize emotions, especially with people I’m unfamiliar with. Signers who emote get across a huge range of meaning that signal very clearly for me.

The teacher saying eyes to eyes but eyes to hands was less meaning to state down the signer, but to tell students that the way signing us absorbed is by looking at the face for information and to express you’re paying attention, while getting the signs from the outer portion of your vision, not the middle.

TL;DR Looking at the signer’s face is required; eye contact is not. Making expressions is hard and many student signers have a hard time; this is expected by everyone and not a sign of failure. For me at least, signers’ expressions are easy to read and very informative. I understand meaning in ASL much better than I do in spoken English.

(Some of this information is not accurate when communicating with signers with other access needs, like deafblind. The access changes depend on the reason and within that also vary from person to person.)

Any Deaf care to add?

Meaningful echolalia

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.

tl;dr 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).

Floortime-DIR/Intensive Interaction experiences?

I’m trying to find out more about the Floortime-DIR approach. (It’s a therapy mostly used for autism). 

I’m also trying to find out more about Intensive Interaction, which seems to be at least somewhat similar.

I haven’t been able to find anything written by people who have experienced either approach as a client.

Have any of y’all received either Floortime-DIR or Intensive Interaction therapy? If so, would any of y’all be willing to talk to me about your experiences?

AAC does not replace nonverbal communication

This is a continuation of a series on why I think it’s a mistake to ignore nonverbal communication in an attempt to force someone to use AAC. (The short version: it’s disrespectful, it undermines someone’s ability to communicate, and it prevents people from developing a valuable skill.)

One reason nonverbal communication is important for AAC users is that you always have your body with you. That is not necessarily the case for AAC devices.

AAC best practices say that someone should have them available constantly. In practice, people don’t. This is for several reasons. One is that it’s not practical to take a device to some places (for instance, most people are not willing to take a high tech device to the beach, and low tech devices are a lot more limiting.) Another reason is that sometimes people forget, or vastly underestimate how close a device needs to be in order to be immediately available. Or any number of reasons, some innocent and some horrifying, and many a mixture of both.

Also, people take devices away from AAC users. They shouldn’t, but they do. Sometimes it’s accidental; sometimes it’s on purpose. It’s never ok, but people do it a lot. If you’re teaching a nonverbal child to communicate, you need to keep this in mind when you’re considering what to teach them. You can’t assume that people will always treat them appropriately, and you can’t assume that they will always have their device. If they are capable of communicating with their body, it is an important skill for them.

Whatever else happens, someone always has their body with them. People can do a lot more if they can use their body to communicate. Communicating in body language can make it possible to communicate in a swimming pool. It can make it possible to communicate with dirty hands. It can make it possible for someone to indicate that their device isn’t within reach and that they need it. It can make it possible to communicate about pain in medical situations. It can make it possible to communicate when someone else doesn’t want you to, and has taken your device away. It can make friendship possible that otherwise wouldn’t be. And any number of other things, all of which are important.

And in order to be able to communicate with body language, people need opportunities to practice and develop this skill. If you ignore someone’s nonverbal communication to encourage AAC use, you’re making it harder for them to develop comprehensible body language. That’s not a good idea, because comprehensible body language is important. People won’t always have access to their device. They will always have their body.

tl;dr Nonverbal communication is important for nonverbal people, but parents are often encouraged to pretend not to understand it in order to encourage AAC use. This makes it harder for people to develop body language that others can understand. One reason this is a problem is that people don’t always have access to their devices, but people *do* always have access to their bodies. Nonverbal people should have support in developing nonverbal communication, because it is an important skill.

AAC is not a cure

This is a continuation of a series on why I think it’s important to listen to the nonverbal communication of nonverbal people. Often, parents are encouraged to not listen or to pretend not to understand, so that kids will be forced to learn AAC and use words. I think this is a mistake, for any number of reasons. The first post focused on the general importance of listening.

Another problem with this advice is that ignoring nonverbal communication discourages people from developing their nonverbal communication skills. That’s a bad idea, because nonverbal communication is a very useful skill for nonverbal people. It should be encouraged, not discouraged.

It’s valuable for several different reasons (and I assume, for many reasons I don’t know about.)

One is that AAC is not a cure, and it doesn’t make nonspeaking people just like people who can talk. Nonverbal people who have communication devices are still nonverbal. Currently existing AAC devices can’t do everything that speech can do. For instance:

  • AAC devices mostly can’t do tone. Voices usually can.
  • AAC devices can’t go everywhere. Voices usually can.
  • AAC devices can be taken away much, much more easily than voices can.
  • AAC is usually slow. That makes interrupting hard-to-impossible. Voices can usually be used to interrupt.
  • AAC is usually fairly quiet. Voices can usually yell.
  • Symbol-based devices generally don’t have anywhere close to sufficient vocabulary for emotional or physical intimacy. Voices do.
  • Many AAC devices give others a lot of control over what someone can say. Voices are usually more flexible.

For a lot of these things, body language and movement can be a more effective way of communicating than using a speech device. For instance, putting up a hand to say “stop!” is a lot more likely to be understood quickly than using an AAC device to say the same thing.

Similarly, most symbol sets developed that touch on sexuality at all assume the main reason people need sexual vocabulary is to be able to report abuse. Most of them don’t have robust symbols for discussing sexuality and sexual desire — and most of them don’t have any symbols for emotional intimacy at all. Body language can communicate things that a system designed this way can’t.

Another reason AAC is not like speech is that people who are nonspeaking, are nonspeaking for reasons. And AAC does not make those reasons go away.

Some people are nonspeaking because words are unnatural, painful, and cognitively draining. People like that deserve to be able to communicate in ways that are natural and comfortable. And it’s important for people close to them to listen to their natural communication. Ignoring someone’s most natural communication it is a rejection of their personhood. It’s important not to do that to people.

It’s also dangerous, because someone who finds AAC cognitively difficult and draining is likely not going to be able to use it all the time. For some people, this can be especially true when it’s particularly important to communicate, or when they’re sick. If you’re responsible for someone and you only know how to listen when they use AAC, that’s dangerous. If there’s another way they communicate, it’s important to develop your ability to understand it. (Or, if you can’t, to find someone who can.)

Similarly, if someone has apraxia or other difficulties controlling their body well enough to point, their physical ability to use AAC is likely to vary. And it’s still important to listen to them when they aren’t able to use it in the ways they sometimes can.

tl;dr Access to AAC is important. It’s not the only thing that’s important, and it’s not a cure. Nonverbal people who use AAC are still nonverbal. Body language and using one’s body to communicate are also important skills. (Not everyone can learn to do this. For people who can, it’s valuable.) It is not a good idea to discourage AAC users from using body language to communicate.

In defense of nonverbal communication

Lately, I’ve been seeing a lot of posts giving parents of nonverbal kids the advice “pretend not to understand your child so that they will be forced to use AAC and communicate in words”.

I think this is a mistake.

I think that if you want to teach someone to communicate, it has to be built on a foundation of listening to them. And that means listening to all of their communication, not just communication that happens in words.

I also think that all of someone’s communication methods are important, and that they all need to be respected. There isn’t one true method of communication. They all matter.

Communicating through body language is useful for all people. People who can talk are allowed to communicate through body language, and actively encouraged to develop the skill of doing so. It’s expected that, when I smile, point to things, frown, or whatever, that people will listen to what I’m communicating. Nonspeaking people deserve the same respect.

People say “communication shouldn’t wait for speech”. I agree with that. And I think it shouldn’t wait for words either. Because words may never come. If you wait for someone to reliably use words to listen to them, you may end up never listening to them. And everyone deserves to be heard.

And even if they will eventually use words and sentences, the things they’re saying *now* still matter. And listening to them is still important.

Presuming competence shouldn’t mean assuming that with the right support, people will eventually base most of their communication on words. Presuming competence should mean assuming that, with the right support, people will choose the means of communication that work best for them. Which may be speech. Or a voice output communication device. Or sign. Or body language. Or pointing to a letter board. Or speech. Or any number of other things. Or any number of combinations of things.

tl;dr Everyone deserves to be listened to. If you want to support someone in learning to communicate, it has to be built on a foundation of listening to them — in whatever form their communication takes. Ignoring one form of communication to force them to learn a different form is not respectful, and probably won’t help.

Aftermaths of social skills lessons

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.

tl;dr 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.

We are people

When I see a picture of someone who looks like me, it’s usually illustrating a tragic or demeaning story.

Sometimes it’s a picture of a child, illustrating a story about how difficult life is for parents of autistic children. Or a story about how the child’s favorite thing got turned into therapy. With depressing bullying statistics.

Sometimes it’s a picture of an adult, illustrating a story about how difficult life is for parents of autistic children once their kids reach adulthood. Or a bleak story about unemployment statistics. Sometimes it’s a story about a special business or sheltered workshop for autistics that the parent is proud to say their child is involved with. With depressing unemployment statistics.

Sometimes it’s a story about how an autistic person has a special talent. Maybe they’re an artist. The story is always about how mysterious and beautifully tragic it is that autism sometimes gives people special abilities along with significant impairments. The story will not take them seriously as an artist. It will be a human interest story about autism, and no art experts will be quoted — but the headline will probably say “autism does not define him.”

This gets corrosive. It can make the world seem bleak and hopeless. It can be hard to remember that this isn’t an accurate way to describe us. That we are, in fact, more than that.

In real life, we’re people, and we do things. We do things besides be miserable or be inspiring. We have thoughts and attributes that are not convenient to the tragic plots of newspaper articles. We’re people. We do real things. And we matter.

I am not a tragic story; I am not an illustration. I am a real person. And so are you.

Appearing to enjoy behavior modificiation is not meaningful

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.

Anonymous said to realsocialskills:

for the autistic person interested in kitchen work

If you’re in US there’s the Recipe For Success program which trains unemployed/underemployed people in prep cook skills and certifies them in Restaurant Management (it is NOT a course on how to get a pity job sweeping floors for min wage). 

To warn you though- Im autistic, dreamed of being a chef, found the course humiliating/frustrating, did not want 2b chef after. There’s a lot of teamwork, which can be hard if you are bad at reading other other people and anticipating what people want from you (the best thing you can do is make friends with the group so they will help you, otherwise you’ll never understand what’d going on). 

My instructors were also big on Taking Initiative, don’t know if other teachers would be but mine invented the entire national program so…if you need structure in order to know what to do, that might be a problem. I also found the strong smells to be an issue. But that’s me and my personality.

thoughts on dating while autistic

Anonymous said to :

Hi! I’m autistic, and I’ve never dated anyone, although I have been asked out before. Truthfully, I’m terrified of dating or being in a relationship, because I’m almost 18 and I’ve never even kissed anyone before, and I’m embarrassed!

I’m a pretty attractive girl and very good at hiding my autism, so people are interested in me at first, until I totally mess up flirting because of my social awkwardness.

Can you tell me what dating/relationships are like, so I know what to expect/how to act? thanks!

realsocialskills said:

I can’t answer this directly because dating and relationships are different for everyone. They aren’t about scripts; they’re about building something with another person that works for both of you. I don’t know what they will be like for you. That is something that you will figure out as you get more experience.

But I can tell you some related things:

It’s ok to be embarrassed. Figuring out dating is embarrassing for most people. That doesn’t mean that you can’t date or have relationships. It just means that you will be embarrassed sometimes.

Flirting is at least sort of embarrassing even when it’s working. Figuring out whether or not someone is interested in you is at least somewhat embarrassing for almost everyone. Flirting is a way to make the process of figuring it out more pleasant than embarrassing.

Flirting effectively is a bit like learning to play the violin — just like initial attempts to play the violin sound terrible, initial attempts to learn how to flirt tend to be acutely embarrassing. That’s ok. It doesn’t mean something is wrong with you. It just means that there’s a learning curve.

Also — it’s not unusual to be 17 and not have kissed anyone yet. Sometimes the way people talk about teenagers can make it sound like everyone is dating and having sex, but it’s not true. Some people are, and some people aren’t. Both are ok. A lot of people your age haven’t kissed anyone. And the people who are kissing others also get embarrassed and unsure of themselves.

(It would also be ok even if it was unusual. It’s ok if some things are harder or take longer for you than they do for most people.)

Many of the skills involved in romantic relationships are the same skills involved in friendship. And one of the most important skills involved in friendship is figuring out how to tell whether you like someone, and whether they like you.

Figuring out whether you like someone can be hard for a lot of autistic people. Among other reasons, a lot of us are taught that we have to be friends with anyone who will tolerate our company. That’s not how dating works and it’s not how friendship works either.

If you don’t like someone, you shouldn’t date them. If you don’t like spending time with someone, you shouldn’t date them. If you’re hoping that they will change dramatically, you shouldn’t date them. It’s only a good idea to date someone if you like them and enjoy their company as they are now. You can’t build a good relationship with an imaginary person.

Similarly, it’s important to only date people who like you. People who are hoping that you will change, or who want you to act nonautistic all the time, are not people who like you.

You can’t become nonautistic to please people who find autism repellant, and you aren’t going to be able to hide autism from them forever. It always becomes noticeable sooner or later, because autism affects you and your experiences and impairments matter. You are who you are, and your disability is part of that. And that’s ok, because disabled people can date, and we can do it well.

The most important thing to know about dating and relationships is that, in good relationships, the people involved like and respect each other. Respecting and liking yourself is an important part of learning to build a mutually respectful relationship. Liking yourself helps you to like others; and to tell whether others like you. Respecting yourself helps you to learn to treat others respectfully; and to understand whether or not the ways others are treating you are ok.

From the way you phrased your ask, I think that you might be having a lot of trouble feeling ok about yourself as an autistic person. I think that it would help you a lot to work on understanding that it’s ok to be autistic, and that you can be a fabulous autistic human being.

It sounds to me that you think that you have to pass as non-autistic to be dateable. You don’t have to do that. Autism doesn’t prevent kissing and it doesn’t prevent love.

A lot of autistic people struggle to feel worthy of love and friendship. A lot of us feel repulsive a lot of the time. We’re often made to feel that our thoughts, feelings, interests, and body language are disgusting flaws. But they are not. We’re ok. Being autistic is ok.

We are beautiful. The way we look and the way we move and the way we think is beautiful. Autistic beauty is real, and there are people in the world who appreciate it.

We are often taught that, unless we learn to pretend that we’re normal, no one will ever like us. (That’s the basic message of the Social Thinking curriculum, for instance). We’re also often taught that we’re not allowed to make mistakes. A lot of us feel like every time we make a social mistake, it’s showing that we’re deeply flawed and hopelessly unworthy.

That makes dating really hard, because everyone makes acutely embarrassing social mistakes as they learn how to date. (And often even after they have a lot of experience.). It sounds to me like you might feel like you have to earn the right to date by never making any embarrassing mistakes. You don’t. If that was the standard, no one would ever be able to date. It’s ok to be fallible and embarrassed and unsure of things. You’re ok.

There are people who will appreciate your beauty. There are people who will find you attractive. There are people who will love you.

You can learn how to date, and you can do it as yourself.

Thoughts on doing right by nonspeaking people

Anonymous said to :

I thought your post about kids with autism was great… but tbh I feel like a lot of autism resources ignore autistic people who are less self aware? For example, my sister, who has autism and is unaware of it + cannot speak… where are the resources that apply to her?

How can I help and support her? I feel like people with autism like her are frequently ignored in these kinds of posts.

realsocialskills said:

Several things:

Remember how much you don’t know:

  • You can’t really say definitively that your sister isn’t aware of autism
  • There is no reliable way to assess receptive language in someone without reliable expressive communication
  • Ie: You know that your sister can’t talk; you don’t know what she understands
  • Some tests can show that someone *does* understand language, but they can never show definitively that they *don’t*
  • Your sister may understand language; she may not. There’s no reliable way to be sure
  • It’s important to keep both possibilities in mind
  • Dave Hingsburger wrote a couple of good posts about interacting with nonspeaking people who may or may not understand language here and here

Keeping in mind the possibility that she understands language (or that she might be able to learn how to use language):

  • Talk to her like she understands
  • Tell her about things you think she might want to know (including autism)
  • Tell her that you can what she thinks, and that you know she might understand you
  • When you make choices related to her, explain them to her
  • Tell her what’s going on and what’s going to happen, whether or not she demonstrates understanding
  • Have books around about things she might want to know about
  • Turn the TV or radio to things you think she might be interested in
  • If she’s a child, put her in educational settings in which she’s hearing lessons on grade-level material, whether or not she’s able to demonstrate comprehension
  • Keep trying for communication support

Regarding communication support:

  • There are a *lot* of different things to try
  • A month-long trial is not long enough to determine whether a communication strategy will work for someone
  • Some people can use a system right away; some people need months of being shown how it works and experimentation before they can use it
  • You don’t have to use simpler systems before you can do more complex things
  • One of the things you should try is a high-tech AAC system based on core vocabulary.
  • Speak For Yourself has some advantages over most other systems (including that they have good resources for people supporting family members without much professional support)
  • This is a good post on the importance of trying things, with some suggestions of things to try. (It’s written by a parent of a young child, but it’s also relevant for people supporting older children or adults).
  • Human-supported systems like a PODD book work better for some people
  • Signed languages like ASL work well for some people
  • The Rapid Prompting Method works for some people nothing else works for. (It’s particularly effective for people with severe apraxia or severe attention problems.)
  • Multi-sensory systems like Makaton also work for some people (but systems that allow for more open forms of communication are better)
  • tl;dr There are a *lot* of approaches to supporting communication, and it’s important to keep trying to find one that will work for her

Keep in mind the possibility that she does not understand language, or that she needs help understanding it:

  • She might not understand words
  • She might need pictures or symbols to help her understand words
  • She might need simplified language (but don’t make *everything* simplified, because that might not be what she needs. It’s a guess)
  • Whether or not she understands language, she does think, and her thoughts matter
  • She likes and dislikes things, and that matters too
  • (Self-awareness and language aren’t the same thing)

Make room for stuff she cares about:

  • If you think she likes, cares about, or is interested in something, find ways of making that thing available to her
  • Even if it’s things like watching the same clips on YouTube over and over, or spinning things.
  • If those things are important to her, then they’re important
  • Create opportunities for her to try new things. (Not forced. But like, offer her different kinds of food and books and stuff to watch on TV and places to go.)
  • Let it be an end in itself
  • Don’t make everything she likes into therapy
  • And *especially* don’t make everything she likes into a reinforcer to get her to do what you want
  • She has the right to like things, be interested in things, and have time that is her own

Help her to find a peer group:

  • If she doesn’t know any other autistic people, that’s a problem
  • If she doesn’t know any other nonspeaking people, that’s a problem
  • If the only time she spends with other disabled people is in tightly regimented special education or therapeutic settings, that’s also a problem
  • It’s important for disabled people to have the opportunity to meet and interact with other disabled people
  • This is particularly important for disabled people whose communication is thoroughly atypical.
  • Eg: there may be other autistic people who readily understand her body language
  • Not all disabled people will be friends, and it’s important not to force it
  • It’s also important to create opportunities
  • (And to make sure she’s seen pictures and videos of other people who look like her.)

Find ways of listening to her:

  • Whether or not she uses language, she’s communicating some things in some ways
  • Find ways of listening to her
  • Pay attention to what she does, and how she’s reacting to things, and what you think she might mean
  • (Do keep in mind that you’re guessing — it’s easy to misunderstand nonverbal communication when someone has no words or unambiguous symbolic gestures to correct you with).
  • Tell her, through words and actions, that you care about understanding what she’s telling you
  • Eg: Say explicitly things like “I think you are trying to tell me something. I’m not sure what you mean, but I’m trying to understand.”
  • Then when you think you know what she means, don’t ignore it; act on it
  • Whether or not she understands your words, it’s likely that saying them will help her to understand that you care. (It will also remind you to care).
  • The more you work on listening to her, the more often you will understand her communication

Creative arts therapists might be helpful:

  • Some creative arts therapists (particularly music therapists) do good work with nonspeaking people
  • They can often find expressive and receptive communication that others don’t find
  • They can also help to figure out what someone likes
  • (Make sure the person you go to isn’t also a behaviorist. Behavior therapists are not good at this and they tend to cause other problems).

Share what you know about her communication:

  • If others think she doesn’t communicate, tell them what you know or suspect about her communication
  • Sometimes they will use what you tell them to communicate with her
  • Even if they don’t believe you, the fact that you think she communicates will often make them treat her better

Don’t make decisions for her that she can make for herself:

  • eg: If she understands what clothing is and can pick a shirt, don’t decide for her which shirt to wear
  • If there are different kinds of food, don’t pick for her; ask her what she wants
  • If she’s in a social setting with other people; don’t prompt her into interacting with particular people. Being nonspeaking doesn’t make you the boss of her social life.
  • Just generally, don’t script everything. Respect her space and see what she initiates and chooses.
  • And if she needs help choosing, don’t take over; offer support
  • Eg: If she’s overwhelmed by the number of shirts she has, try picking up two and asking which one.

tl;dr If someone doesn’t speak, it’s important not to assume they’re unable to understand language — and also important not to assume that they do. In either case, it’s important to listen to them, speak to them respectfully, work on finding ways to support their communication, make room for their interests, and respect their decisions.

Disability acceptance for partners

Anonymous said to :

Hi, my boyfriend is autistic on the Aspergers spectrum and I don’t know what to do when he’s overloaded. I just really want to help him calm down again.

Is there any advice you can give me?

realsocialskills said:

There’s a lot of things that could be going on. I don’t know you or your boyfriend, so I can’t really tell you much that’s specific to your situation.

I think it’s possible that you may be taking too much responsibility for your boyfriend’s overload. If so, it would be better for both of you if you let it go a bit.

There’s a narrative in the media that’s common, and destructive, that goes like this:

  • Disabled person (usually a man) can’t function
  • He meets an amazing person (usually a woman), and they get involved romantically
  • Through the transformative power of love, he is healed
  • Then either he stops being disabled or his attitude changes in a way that means disability no longer matters in any significant way

Sometimes this goes along with another trope, “the only disability in life is a bad attitude”.

  • People who buy into that trope believe that disability only matters if they let it matter.
  • And they disability can be ~overcome~ by positive thinking and not being bitter.

For disabled people, this narrative pressures us to pretend that disability doesn’t matter. Or to make it stop mattering through sheer force of will. For people who love us, it creates pressure to fix everything and make disability irrelevant through the power of love and support. In real life, neither of those things work.

In real life, disability matters no matter what people think about it and no matter how much others love them. Having a good attitude can make life better; it can’t make disability irrelevant. Love can make life better; it can’t make disability irrelevant either. Disability goes deep, and it affects a lot of areas of life. And sometimes things are hard.

Part of being a good partner to an autistic person is accepting that autism is going to matter. No matter how wonderful you are, you’re not going to be able to stop autism from mattering.

I don’t know what’s going on with your boyfriend and his overload. I do know that, for many autistic people, overload is an inevitable fact of life. Sometimes, it’s the price of admission for doing certain things we care about. Overload is not always something you can prevent or fix. Sometimes the decisions get complicated.

Your boyfriend is the one who is responsible for figuring out how he wants to approach overload. He is the one who needs to decide which risks are worth taking, which are worth avoiding, and how he wants to handle it when he is overloaded. You can’t protect him from this.

You might be able to help with some of it some of the time. Many autistic people like certain kinds of support in dealing with overload, for instance:

  • Having someone else pay attention to signs of imminent overload and point them out
  • Being reminded that leaving is an option
  • Being reminded that it’s ok to be autistic in public and that they can stay if they want
  • Help leaving an overloading place
  • Being left alone and having someone else run interference to keep other people from trying to intervene
  • Having a stim toy handed to them
  • Knowing that people they’re with aren’t going to try to stop the overload and will leave them alone
  • Water
  • Help finding a quiet place to go
  • Being able to hold someone’s hand
  • And any number of other things

Note that many of these things are mutually exclusive. Autistic people have wildly different needs and preferences around handling overload. I don’t know what your boyfriend needs or wants; that’s for him to determine.

The only way to find out what your boyfriend wants you to do when he gets overloaded is to ask him, and to listen to what he says.

  • It’s worth having this conversation when he’s not overloaded and is able to communicate readily.
  • It’s also important to listen to what he says when he’s overloaded, even if it contradicts what he’s said before (unless he told you beforehand not to)
  • The question shouldn’t be “How can I calm you down?”, because that might not be possible or something he wants.
  • The question should be something like “When we’re together and you get overloaded, how do you want me to react?”
  • It’s ok if he doesn’t want to have an intimate discussion about overload, and it’s ok if he doesn’t want your help.
  • But you do need to know what he wants you to do in that situation, and so it’s ok and important to ask.

tl;dr Autism acceptance is important for partners of autistic people too. You can’t fix everything or make autism stop mattering. Sometimes things are going to be hard for us no matter what you do. Whether we want help, and the kind of help we want, varies from person to person. If you want to know, it’s important to ask.

Remembering that disabled people have perspectives

xmaymaychan33x said, in response to the post about noticing when repetition is communication:

Yes good. But also, sometimes when people with autism begin repeating phrases, it can just be a calming thing for them. They may like the way the words sound or they may like hearing your answer, and that makes them feel good and you should never ever judge someone for doing something that makes them happy.

(Also a little side note that I picked up from my special education class: it’s not very nice to refer to persons with disabilities as person, and better to say “person with _” because the first way emphasizes the disability while the second emphasizes that you are speaking about a person. An actual person who is no less valid than anyone else.)

realsocialskills said:

I’m autistic. I wrote that post a couple of years ago. I’d just realized that I’d been routinely disregarding another autistic person’s attempts to communicate with me. As soon as I noticed that I was ignoring her, I started listening. And I was kind of kicking myself for not figuring it out sooner, because I’ve been on both sides of that kind of conversation.

There is a strong cultural assumption that anything repetitive an autistic person does is either meaningless or sensory-seeking. I thought I was above making that kind of mistake. I wasn’t. I’m not. I don’t think anyone is. I think we all need to be reminded to take the possibility of communication seriously, every time.

I think that it’s connected to ways in which disabled people are often not included in conversations about disability. The assumption behind that is that we have nothing to say worth hearing, and that other people should speak for us.

Whenever that post gets popular again, special educators and special education students correct me and say that I shouldn’t call “them” autistic, I should call “them” people with autism. It doesn’t seem to occur to them that I might be autistic myself, and that what I’m saying might be an autistic perspective on autism.

I think that disability is an important enough part of who I am to be worthy of an adjective. I don’t need to distance myself from autism to know that I’m a person. Here’s a post from a physically disabled disability expert who also feels that way.

Preferring “autistic” to “person with autism” is a really, really common preference among autistic adults. Partly, this is because person first language is associated with horrible organizations like Autism Speaks. Here’s a post about some of the history and politics of autism language preferences.

There is a long history of disability rights advocacy on the part of disabled adults. Special educators should know about these things. They largely don’t. It should be taught in special education training programs and degrees. It largely isn’t. Special educators who understand the importance of adult disability perspectives largely have to seek them out on their own. One good book to start with is Too Late To Die Young by Harriet McBryde Johnson.

From an autism-specific perspective, The History of ANI, Help, I seem to be getting more autistic, Navigating College and Inertia: From Theory to Praxis are good things to read. And the Autistic Self Advocacy Network, AutCom, and Autism Women’s Network are good organizations to know about.

It’s important to seek out perspectives of adults similar to your students. It’s also important to listen to your students themselves.

Getting back more directly to your reply to my post:

It’s definitely the case that autistic people repeat stuff for a number of reasons. Some autistic people sometimes repeat things for calming, or for sensory pleasure, or for aesthetic reasons. Those are all real things, and they’re all worthwhile things that need to be respected.

The problem is that people routinely interpret autistic communication as sensory seeking or similar. Then they completely ignore what the autistic person is actually saying. This is often taken to extreme lengths. There are a lot of autistic people in the world who are assumed to have no communication, and who are never listened to about anything, ever.

Far too many people who should know better, including professionals, treat autistics as though they have nothing to say worth hearing, and ignore all of their attempt to communicate. Sometimes this is expressed in negative, stigmatizing terms. For instance, a behaviorist might create a behavior program to stop someone from repeating the echolalic phrases they use to communicate. Sometimes it’s expressed in positive, embracing terms. For instance, a Floortime-DIR practitioner might interpret their repetitive communication as an unmet sensory need and put them on a swing in a sensory gym. The stigmatizing approach is more obviously brutal, but the net effect is the same.

Having your communication ignored in a room full of toys by people who think they’re respecting you is still being silenced. And it’s very, very important to keep that in mind. Because it does the same damage regardless of your intent. None of us are above making that mistake, and people who are ignored get hurt even if you didn’t understand that you were ignoring them.

I think that it’s always important to consider the questions:

  • “Are they trying to tell me something?”, and:
  • “Do they know I’m listening?”
  • “How can I verify that I understand what is being communicated?”

It’s also important to consider what would support their communication more effectively:

And above all, it’s important to remember that the person you’re interacting with is thinking, and that their thoughts matter. Whether or not you can tell what they’re thinking, their thoughts exist and you can’t speak for them. Their perspective will not always match yours, or their therapist’s, or their parents’, or what you were told in education classes.

Reading the work of adult autistics and other disabled adults who have a variety of perspectives might make it easier to keep this in mind. It might also help you to make better guesses.

It’s also important to remember that listening to us is not a substitute for listening to your students. They have a perspective of their own, and no one can speak for them. It is absolutely vital to find effective ways of listening to them.

tl;dr A lot of autistic communication gets disregarded as stimming. A lot of autistic people whose communication is atypical get ignored all the time, about everything. It’s important to remember that autistic people have perspectives, and to find ways to listen to them.

adult autism diagnosis when you have learned to cover

Anonymous said to :

I’ve suspected that I was autistic for a long time, as has a parent of mine who has worked extensively with autistic kids, but I was in a severely under-diagnosed demographic, still am, and on top of that by necessity a lot of my more overtly autistic behaviors have been covered up, compensated for, or eliminated so I could get by.

I know I’m probably still autistic, I mean you can’t get rid of all of it and I know there are definitely things going on still, but I’m afraid they won’t believe me.

realsocialskills said:

They might not believe you. I’m not going to lie and tell you that you will definitely be believed.

That said, the current diagnostic criteria in the DSM-5 do account for this somewhat:

Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).

Whether you’ll be believed is somewhat unpredictable, and a matter of luck. Not all doctors use the new criteria, and a lot of doctors believe things about autism that aren’t particularly related to the diagnostic standards.

(Eg: some doctors think that girls can’t be autistic, even though there have been diagnosed girls as long as the diagnosis has existed. Or that people who can talk, hold down a job, and have friends can’t be autistic. Or any number of other stereotypes).

I don’t know what to tell you about how to find a doctor who will take the new diagnostic standards seriously. They definitely exist, but I don’t know any reliable way to identify them.

If you have documentation of autistic traits in childhood, that is likely to be helpful. (Eg: school records, baby book, etc.)

tl;dr Adult autistic diagnosis in theory can take into account the fact that coping skills can mask symptoms. In practice, whether or not you find someone who will take that seriously is largely a matter of luck.

Autistic kids need to be able to talk about disability

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.

tl;dr 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

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.

tl;dr 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.