respect

When audiences at disability conferences laugh instead of listening

A challenge to disability professionals and disabled presenters at conferences and panels: Please find a way to respond to the routine contempt that presenters with disabilities are treated with.

I’ve gone to a fair number of disability-related conferences in the past few years. At nearly every conference, I saw an audience laugh at a presenter/panelist with a developmental disability. This happened particularly often to presenters with intellectual disabilities, but I also saw it happen to autistic presenters and presenters with speech disabilities. 

This isn’t a matter of random jerk encounters; it’s a major cultural problem. Even disability professionals who pride themselves on inclusivity and respect tend to behave this way.

This isn’t nice laughter. It’s not a response to something funny. It’s a response to presenters talking about what they’re proud of, what they’re good at, or talking about wanting control over their own lives. People also laugh similarly when parents and siblings talking about their disabled relative wanting autonomy or objecting to being treated like a little child. This happens all the time, and it needs to stop.

If you’re moderating a panel and the audience laughs at a panelist, here’s one method for shutting this down:

Be proactive about taking the panelist seriously:

  • Don’t look at the audience while they’re laughing, and *especially* don’t laugh or smile yourself.
  • Wait for the audience to stop laughing.
  • Pause briefly before going on. This will make the laughter feel awkward.
  • Ask the panelist a question that makes it clear that you respect what they’re saying.
  • You can explicitly ask “Did you mean that seriously?”
  • You can also be a bit less direct, and say something like “That sounds important. Can you say more?”
  • You can also ask a follow-up question about the specific thing they were saying. 

I think that we all need to be proactive about changing this culture. (Including disabled presenters who get laughed at; we need to insist on being taken seriously. More on that in another post).

There are more ways to shut down disrespectful laughter and insist on respectful interactions than I know about. What are yours?

Show explicit respect for your audience

When you’re giving a presentation, it’s important to show explicit respect for your audience.

Good presentations are essentially a collaboration between the presenter and the audience. You try to teach in a way that they can understand — and they try to listen and understand.

It’s hard to get anywhere with a hostile audience. When an audience thinks that you have contempt for them, they’re not likely to put much effort into listening to you. They’re actually likely to actively avoid listening to you. Presentations go best when you can get a significant percentage of your audience on your side as soon as possible.

One way to do this is to show explicit respect for your audience as soon as possible. It’s very helpful to find a point of genuine connection, and to name it explicitly. It doesn’t go without saying — especially if you’re addressing an audience that is used to people like you showing contempt for them.

For instance, if you’re teaching educators, it’s often worth acknowledging that their job is hard. If you’re teaching marginalized people, it’s often worth acknowledging marginalization. If you’re teaching a group of people who have an attitude or accomplishments you respect, it’s often worth saying what they are explicitly. Showing this kind of respect tends to make for a much more productive conversation.

Tl;dr If you’re giving a presentation to a group, it’s very helpful to show explicit respect for the group in your introductory remarks.

ASL is a language

andreashettle:

disabilityinkidlit:

realsocialskills:

American Sign Language and other signed languages are languages. It’s important to respect them as languages.

ASL is not English. It is a completely different language. Similarly, signed languages aren’t all the same. British Sign Language is completely different from ASL.

Signs are not universal, any more than spoken words are universal. The meaning of a sign isn’t always obvious just by watching; many signs are completely arbitrary.

Sign is not pantomime, and it’s not ad hoc gesture. It’s also not like symbolic gestures that are sometimes made up to accompany kids songs either. It’s a language, with all the complexities of language. The difference is important, and it needs to be respected. 

In order to know what signs mean, you have to learn them. (Just like in order to know what spoken words mean, you have to learn them.)

ASL is not just gestures, any more than spoken languages are just sounds. ASL has grammar, vocabulary, and culture. It’s important to respect this and not erase it.  

disabilityinkidlit said:

ASL has vernacular just as spoken languages do; here’s a Washington Post article on how ASL used by African-American communities differs from that of whites.

There exist an incredible amount of sign languages, all over the world. Here’s a list on Wikipedia.

andreashettle: said:

Another thing to bear in mind:

A person fluent in both ASL and English (or Spanish and Venezuelan sign language or whatever) is bilingual, just like a person fluent in Spanish and English or whatever.

This SHOULD be an obvious thing once you grasp that signed languages are real LANGUAGES. But for some reason a lot of people seem to have trouble making the connection on their own and just don’t count signed languages when counting the langages that a person knows.

I once knew a deaf woman who knew 12 languages, including 7 signed languages and 5 written languages. (She does not speak or read lips in any of them, she communicates either by signing or by reading and writing)

ASL is a language

American Sign Language and other signed languages are languages. It’s important to respect them as languages.

ASL is not English. It is a completely different language. Similarly, signed languages aren’t all the same. British Sign Language is completely different from ASL.

Signs are not universal, any more than spoken words are universal. The meaning of a sign isn’t always obvious just by watching; many signs are completely arbitrary.

Sign is not pantomime, and it’s not ad hoc gesture. It’s also not like symbolic gestures that are sometimes made up to accompany kids songs either. It’s a language, with all the complexities of language. The difference is important, and it needs to be respected. 

In order to know what signs mean, you have to learn them. (Just like in order to know what spoken words mean, you have to learn them.)

ASL is not just gestures, any more than spoken languages are just sounds. ASL has grammar, vocabulary, and culture. It’s important to respect this and not erase it.  

Why I'm suspicious of optimistic doctors

The Uninspirational wrote a reply to my post on how disabled kids learn to be suspicious of optimistic teachers. They point out that the same dynamic happens with doctors:

This pattern, where somebody in a position of power expects their actions to somehow rescue a person they’re supposed to help in some way, is something I’ve experienced a lot as a patient within the healthcare system. Mostly with doctors but also with psychologists, physiotherapists and occupational therapists. It goes something like this…

I’d recommend clicking through and reading the whole thing. It’s a good post.

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).

Thoughts on symbol support and picture support

People with certain kinds of disabilities often need more than words in order to be able to communicate. One thing that can be helpful is the use of symbols or pictures.

Using symbols can expand and support someone’s expressive vocabulary. (For instance, picture symbols on a communication device can enable someone to use words they couldn’t use by typing or speaking).

Symbols can also expand and support someone’s receptive vocabulary. For instance, symbols can be used to illustrate materials, or to explain something to someone. They can also be used in things like powerpoint presentations in various ways.

Symbol support can do a lot of other things that make communication more possible for people with a wide range of disabilities. It’s not just about literacy; literacy-related things are just the easiest to explain.

Something I’ve been realizing matters is that everyone who uses symbols to communicate is a symbol support user. Even people who normally communicate in words; even people who only use symbols to communicate when they are talking to people with disabilities or listening to people with disabilities.

It’s important to remember that communication in symbols is happening on both sides of the interaction.

If someone is communicating with you by showing you symbols, then you are using symbols for receptive communication.

If you are using symbols to explain something to someone, then you are using symbols for expressive communication.

It’s important to keep this in mind.

If you’re using symbols, the symbols are part of the communication. Even if every symbol is attached to one word and only one word. The symbols don’t just tell people what the words are. They also have content, and it’s important to pay attention to what you’re saying with the symbols. They might not mean the same thing to the person you’re talking to that they mean to you. Particularly if they understand picture-concepts more readily than they understand word-concepts.

For example:

Sometimes people might select symbols on communication devices based on what the symbols mean rather than what the words they’re associated with them mean:

  • If someone is putting together phrases that don’t make obvious sense to you, they might mean something by it
  • It might *not* be stimming, random exploration, or that kind of thing
  • It might be intentional communication based on what the pictures mean to them
  • I think it is important to take that possibility seriously (even for someone who also speaks, or also uses words)
  • And *especially* important to take seriously if they’re indicating with body language that they want you to look at the screen)
  • (This is also true if someone is using PECS symbols in a way that doesn’t appear to make literal sense. It might be because the pictures mean something different to them than they mean to you)

Similarly:

  • If you’re using symbols to explain something to someone who needs symbols, the symbols matter
  • It’s not always enough to just pick words, then pick symbols that go with those words one-by-one
  • The content of the symbols can matter beyond literal word-by-word meaning
  • The way the symbols combine can also matter. (ie: the fact that a sentence makes sense in words and each symbol corresponds well with a word does *not* necessarily mean that the symbol-sentance makes sense)
  • The symbols also might not mean the same thing to the person you’re communicating with that they mean to you
  • If someone finds symbols easier to understand than words, they may derive more meaning from the symbols and your tone of voice and body language than they do from the words themselves
  • It’s important to pay attention to what you’re communicating with the symbols you choose as well as the words that you choose

Some considerations for symbol use:

  • Consistency between symbols matters. Symbols combine in ways that make more sense when there’s an underlying logic to the symbol system.
  • Symbols should not be childish or cutesy, even for young children.
  • Because nobody, not even young children, wants to be forced to communicate in cute ways.
  • And some really important topics (eg: abuse, boundaries, sexuality) are decidedly un-cute. People with disabilities need and deserve respectful communication about things that aren’t cute or shiny-happy.
  • Symbols should be comprehensible at a variety of sizes. (Eg: overly complex symbols don’t work well for small buttons on a communication device).
  • Symbols should be respectful, especially when they are symbols of people doing or thinking or being things (eg: protestors should look powerful rather than cute; adults should look like adults; symbols for “choice” should either be abstract or be age-neutral)
  • Symbols should be accurate. (eg: the symbol for anger should not be a smiling person; the symbol for diabetes should not be the same as the symbol for “no sugar”; wheelchair users should have the kind of wheelchairs that individuals own than hospital wheelchairs; the symbol for intellectual disability should not be the same as the symbol for the special olympics)
  • In all of these ways and other ways I’m not sure how to explain yet, I think that SymbolStix is the best existing symbol set.

tl;dr Symbols can be really helpful for supporting communication and comprehension. If you’re using symbols to help someone else communicate or understand, it’s important to keep in mind that the symbols and the words both matter. Pay attention to what you’re communicating in symbols and what they’re communicating in symbols. Sometimes there are things going on beyond the literal meanings of the words that someone decided to associate with the symbols.

Civility is not the same as affect

Having a civil conversation is about mutual listening and mutual respect.

Sometimes that gets conflated with affect — people act like the defining feature of respectful conversation is things like the position of your body, the volume of your voice, and whether you’re using polite words.

Sometimes things like that can be involved in what makes a conversation respectful, but they don’t define it.

The rules of politeness allow people to be dismissive and cruel. Similarly, it is possible to have a mutually respectful conversation that violates the rules of politeness.

For instance, it is often possible to have a mutually respectful conversation with raised voices and cuss words. It is also often possible to use a lot of I-statements and gentle-sounding language to have a conversation that is fundamentally disrespectful and cruel.

Conflating affect with respect ends up drowning out a lot of voices, and privileging people who are good at manipulating the rules of politeness.

(Affect matters, and it’s ok if some kinds of affect are dealbreaking for you in terms of your ability to have conversations with someone. I’m not saying that everything should be acceptable to everyone. All I’m saying is that affecting politeness is not the same as treating someone respectfully.)

tl;dr Body language, tone of voice, and affect can be part of what makes a conversation civil and mutually respectful, but they don’t define it.

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.

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.

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.

Attention ≠ respect

Respect and attention get conflated a lot. They’re not actually the same thing.

When someone isn’t paying attention, it’s often assumed that they are either intentionally avoiding listening, or refusing to put any intentional effort into listening. And that, if they just respected the speaker more, they’d be paying attention.

Sometimes that’s true. And sometimes, the reason someone isn’t paying attention has nothing to do with respect. Often, it’s a neurological, psychological, or psychiatric issue. Or the result of pain or fatigue.

For instance, respecting a speaker and wanting to listen to them doesn’t cure ADHD. Cognitive attention problems caused by ADHD have to actually be accommodated and worked around. (For instance, taking medication, learning organization techniques, using captions to focus attention, collaborative note-taking, etc.)

Addressing values only helps when the problem is values. When the problem is disability; you have to address and accommodate disability in order to make progress. No amount of education in respectful attitudes will help if respect isn’t the issue.

tl;dr Please stop assuming that failure to pay attention is always a sign of contempt. Sometimes it’s just a sign of an attention problem.

When you're talking a lot and worried about how much space you are taking up

Anonymous asked:

Do you have any advice for how to facilitate participation when you’re a student who does tend to talk a lot?

I have social anxiety but when it doesn’t affect me as badly I tend to talk a lot. I’ve tried waiting for others to speak but they often don’t even if I wait 30+ seconds… And then I feel an intense urge to fill the space.

realsocialskills said:

A couple of things:

It might be ok if you’re talking more than some other students. Very few classes have everyone talking an exactly equal amount.

Different students have different preferences about how much they like to talk in class. It’s ok that some students prefer to talk more and some students prefer to talk less. It’s not always a problem. It becomes a problem if some students are taking up space in a way that prevents others from participating.

I’m not sure how to tell whether you are taking up space in a problematic way. One way might be to ask your teacher after class or in office hours if they think it’s becoming a problem. (If they do think it’s a problem, they’ll probably be glad you asked and that you care.)

Another way might be to watch whether you’re interrupting people. And if you are interrupting people, whether or not they’re shut down by your interruptions. If you’re interrupting people and that’s resulting in them not getting to make their points, that’s a problem. (Interrupting isn’t always a problem – in some cultures it’s normal and expected for people to respectfully interrupt one another and be respectfully interrupted in turn. If the class you’re in doesn’t have that culture, it’s important to be careful about interrupting.)

Here’s one strategy that might work for coping with silences without interjecting to fill them (this can also work for overcoming urges to interrupt people).

Typing or writing out what you’re having an urge to say:

  • If you type or write the reply you have an urge to make, it can calm the urge without you having to say anything
  • While you’re doing this, someone else may start talking
  • Then, if you still want to say the thing, you can take a turn and say it
  • If you don’t want to say a specific thing but are just feeling uncomfortable, typing/writing about how uncomfortable you are might work to fill the space until someone else starts talking (This works for me sometimes; it seriously backfires for other people. Your milage may vary; trust your own judgment about whether it will be helpful or harmful to you).
  • This can work even in a seminar class when not everyone is taking notes
  • (It may be more socially accepted in that context to use an iPad than a laptop, because you’re significantly less likely to be perceived as goofing off on Facebook with an iPad)

tl;dr Talking more than some other students in a class isn’t always a problem in itself. It’s a problem if the way or the amount you talk prevents others from participating. Typing out stuff you’re thinking of saying before you say it can make it easier to refrain from interrupting people and from rushing to fill silences.

"it's easy" can make scary tasks scarier

When people are struggling or afraid to try something, well-meaning people often try to help them by telling them that the thing is easy. This often backfires.

For instance:

  • Kid: I don’t know how to write a paper! This paper has to be 5 pages long, and we have to do research! It’s so hard!
  • Parent: Don’t worry. 5 pages isn’t that much. This isn’t such a hard assignment. 

In this interaction, the parent is trying to help, but the message the kid is likely hearing is “This shouldn’t be hard. You’re failing at an easy thing.”

If something is hard or scary, it’s better to acknowledge that, and focus on reassuring them that it is possible. (And, if necessary and appropriate, help them to find ways of seeing it as possible.)

For instance:

  • Kid: I don’t know how to write a paper! This paper has to be 5 pages long, and we have to do research! It’s so hard!
  • Parent: It’s hard, and that’s ok. You can do hard things.
  • Parent: What are you writing about?
  • Kid: Self-driving cars. But I can’t find anything. 

And so on.

This isn’t unique to interactions between parents and children. It can also happen between friends, and in other types of relationships.

tl;dr If something’s hard for someone, telling them that it’s easy probably won’t help. Reassuring them that they can do hard things often does help, especially if you can support them in figuring out how to do the thing.



Respectful language as a nondisabled person

tiraspark replied to your post “person first language?”
I also think it’s very different for a disabled person to use these terms interchangeably than it would be for an abled person. You get to make that decision for yourself because you’re a part of the group so to speak?

realsocialskills said:

I don’t think so, actually. Nondisabled people have to use some form of language to refer to us. 

There’s not really much neutral terminology, and there isn’t a broad cross-disability consensus about which language is better. Even within disability groups, this issue is often contentious.

Nondisabled people have to call us something when referring to us, and I think that they could do worse than using both terms interchangeably. 

This article by an SLP, “Would you accept this behavior toward a non-autistic child?” is a piece that I think uses both terms in a clearly respectful way.

A way people with disabilities are often wrongly percieved as angry

Sometimes disabled people are wrong perceived as angry or hostile when they move like disabled people. It works something like this:

  • The most efficient way to do things is often not the socially accepted way to do things
  • People with disabilities often have to do things in an efficient way to be able to do them
  • In order to be perceived as calm and polite, people are often expected to move in a slow, careful way without making sudden or loud motions
  • That’s easy for most people without disabilities, and can be difficult or impossible for people with disabilities
  • Sometimes people with disabilities don’t have the motor coordination or strength to move in expected ways. Sometimes pain or illness makes them too exhausted to have the energy to move in expected ways. Sometimes, they have to move efficiently to be able to move at all.
  • People with disabilities who have to move in loud, sudden, forceful, or jerky ways are often wrongfully perceived as expressing anger, frustration, or aggression.
  • When people make loud, jerky, or sudden motions, they tend to be perceived as rude, angry, or aggressive
  • People with disabilities don’t always have the coordination to make the movements in expected ways
  • Sometimes, they have to be efficient in order to do the thing.
  • This often gets perceived as angry when it isn’t
  • This can lead to people with disabilities who are just trying to live their lives being perceived as hostile and excluded
  • When a person with a disability is moving in a jerky, sudden, or loud way, it’s important to consider the possibility that it’s disability-related rather than angry

Some concrete examples:

Dropping things:

  • In most social contexts, it’s socially expected that people who need things to be on the ground put them there without making a sudden noise

  • This generally means using your arms to slowly lower the thing to the ground
  • People with disabilities often do not have the strength or motor coordination needed to lower things this way
  • Sometimes, people who can’t rely on muscles to lower things need to drop them and rely on gravity
  • (And some people have to rely on gravity some of the time, eg: when they’re tired, at the end of a long day, when they’re in a particularly draining environment, when they’ve already had to lift and drop the thing several times that day.)
  • Gravity only goes one speed, and dropped objects tend to make noise
  • Dropping a heavy object rather than lowering it slowly is usually perceived as a sign of anger (and for people without disabilities, it’s generally intended as one).
  • People with disabilities who drop things are often not intending it as an expression of anger.
  • Often, they drop things because they need them to be on the ground and have no other realistic way of getting them there.
  • If a person with a disability is dropping heavy things rather than lowering them, it’s important not to automatically assume that they are doing this out of a show of emotions
  • Consider seriously the possibility that they’re dropping things because they need to lower them, and due to disability are not able to do so in the socially expected way.

Another example: Plugging things in:

  • The socially expected way to plug things in is to slowly push the plug into the outlet using a steady pressure
  • That requires a particular kind of strength and muscle control
  • Some people with disabilities can’t do that
  • Some people with disabilities have to rely on momentum.
  • Relying on momentum involves one sudden forceful movement. 
  • That can look like punching, and can be perceived as excessive force
  • Most people without disabilities only plug things in with that kind of force when they are angry or frustrated
  • People with disabilities often plug things in that way because it’s the only way they can do it
  • If a person with a disability uses a lot of force to plug things in, don’t assume it’s a display of emotion.
  • Consider seriously the possibility that they’re doing it that way because that’s how their body works

In general:

  • Some socially expected movements are complicated and difficult
  • Sometimes people with disabilities can’t do it in the polite way
  • Sometimes, we have to do it in a way that’s more efficient
  • That’s often perceived as rude, inconsiderate, or threatening, when it’s really just limited ability to move in expected ways
  • No amount of social skills training or knowledge of socially expected behavior will make it physically possible to move in all expected ways
  • This can result in people with disabilities being perceived as angry or displaying rage when all they’re doing is moving
  • It’s important not to automatically assume that people with disabilities who move oddly are doing it to display anger. It might just be that that’s the only reasonable way for them to do something.
  • If you understand this, you’ll be much more able to relate to people with disabilities and include people
  • (People with disabilities, like everyone else, sometimes display anger and frustration in physical ways. But they are routinely wrongly perceived as doing so. It is possible, and important, to learn to tell the difference).

tl;dr People with disabilities are often perceived as displaying rage or aggression when they’re just moving. This is because socially expected ways of moving are often very inefficient in ways that aren’t too difficult for most nondisabled people, but can be difficult or impossible for people with disabilities. It’s important to learn to tell the difference between people with disabilities moving efficiently and people with disabilities displaying anger. Scroll up for details and examples.

Ordering food when you have dietary restrictions

What is the right way to ask over-the-counter-food selling people about the food? I keep having the problem where I ask things (like, what is in the food, for instance) and they interpret this as me ordering it and start making it for me. I want to be respectful and not a jerk to the people, but I can’t just let this go, because the reason I’m asking is that whether or not I can eat the food depends on the answer.
realsocialskills said:
 
I’m not sure, because I have a lot of trouble talking to people who are selling me things.
 
I suspect that part of the problem might be tone, or not using clear enough words.
 
If that’s the problem, then stating the problem first and then asking about the food might help:
  • “I’m a vegetarian. Does the lentil soup have any meat in it?”
  • “I can’t have gluten. Can you tell me which dishes are gluten-free?”
  • “I’m allergic to mushrooms. Does the chicken sandwich have mushrooms in the sauce?”
  • “I don’t like olives. Does the bean salad have olives in it?”

In terms of not being a jerk, it helps to say thank you when they answer the question, and when they give you edible food. 

It’s ok to interrupt if they’re in the process of making possibly-inedible food, but I don’t really know how to do it effectively.

Does anyone else know good ways to handle this? How do you get information at food counters that will tell you whether or not you can eat the food?

One of my friends keeps trying to “diagnose” me with autism, even though I’m almost 100% sure I don’t have autism. It’s getting really irritating. But I don’t know how to tell her to stop doing that without sounding like I think there’s something wrong with being autistic. Do you have any advice?
realsocialskills said:
 
I think there are several issues here:
Privacy:
  • There is nothing more private than your brain
  • You get to decide whether you’re interested in hearing someone’s perspective on your brain
  • You get to decide what you think
  • You get to decide which perspectives you want to keep hearing
  • It’s not ok for friends to keep making invasive personal comments after you’ve let them know that you want them to stop

Concerns about ableism:

  • I don’t know why your friend thinks you’re autistic and why you think you’re not
  • It’s possible that some of your reasons might be ableist. (I’m autistic, and ableism is part of the reason it took me so long to figure it out. A lot of my friends knew before I did.)
  • (It’s also possible that you’re entirely right to think that you’re not autistic.)
  • Even if some of your reasons are ableist, you’re still allowed to want your friend to stop trying to diagnose you
  • The possibility that you are being ableist doesn’t entitle others to make invasive personal comments about your brain
  • You don’t have to be perfect to be allowed to have boundaries about what aspects of your personal life you are and aren’t willing to discuss

Concerns about how you’ll be perceived if you ask your friend to knock it off:

  • I think the best way to assert this boundary is to do so without much explanation, eg:
  • “I don’t want to talk about this anymore.”
  • You don’t have to have a reason that sounds compelling to have the right to say no
  • And if you try to explain, it’s more likely to sound ableist whether or not it is.
  • Also, if you explain, you’re talking about it, which is exactly what you didn’t want to do in the first place
  • You don’t need your friend’s permission to think you’re not autistic
  • You don’t need your friend’s permission to decide that you don’t want to talk about this
  • Your friend should respect this boundary, even if they think you are wrong
  • Part of being a respectful friend means honoring boundaries about which personal things they do and don’t want to discuss
  • If your friend tries to insist on telling you that you’re autistic, it’s not evidence that you’re doing something wrong. It just means that they’re not respecting your boundary in this area.
  • There are no guarantees about how they will react, but it’s likely to go better if you assert your boundary in a matter-of-fact way without arguing about it

Good luck. I hope that you and your friend are able to work this out.