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Thoughts on symbol support and picture support

Real Social Skills

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.

Short version: 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.

Open Letter to People Who Do Things

Real Social Skills

If you do things that others know about, you will attract a lot of criticism.

People will think you’re wrong a lot. Sometimes you will actually be wrong; sometimes you won’t be.

Sometimes people will be vicious. Sometimes people will try to hurt you as badly as they possibly can.

No matter how well you do things, there will be people who are disgusted by what you do and think you’re a terrible person.

No matter how politically neutral the thing you do is, people will attack it for political reasons. (Either a specific reason, or they’ll say it’s frivolous and that you should be fighting global warming or poverty or something instead.)

If you charge money for what you do, people will be outraged (including people who would never work for free.)

No matter how much you charge, people will angrily tell you that it’s too much.

Even if you work for free, people will be angry with you for addressing some things but not others. Or for not giving them what they want fast enough.

No matter how well you consider other sides, someone will angrily accuse you of censorship or refusing to listen.

And so on and so on. No matter what you do, there are people who will be angry and disgusted by it. There will be people who will hate you. There will be people who try to hurt you to make you stop. This happens to absolutely everyone who does things that a lot of other people know about. It is possible to live with that.

(Part of the way to live with that is by learning to keep perspective in the face of other people’s anger.)

A note about criticism – it’s important to be open to criticism, because sometimes you will be wrong. In order to be truly open to criticism, you have to get past the desire to appease everyone who is mad at you. If you try to please everyone, what ends up happening is that you end up deferring to whoever is the loudest and meanest. Listening to criticism in a good way means you have to be selective — and it also usually means disengaging from jerks.

You don’t have to be perfect to do things that matter. If only perfect people could do things, nothing would ever get done. Everyone who has every done anything has also been flawed in a serious way. Because that’s how people are.

It’s also important to remember that you don’t owe the world a heckler’s veto. There will always be people who don’t like you or your work. That doesn’t mean you have to stop. It doesn’t mean you have to engage with them. It just means that you’re being noticed, and that some people don’t like what they’re seeing.

Short version: If you do things that people notice, some people who notice will be mean to you and try to convince you that you are terrible. That happens to everyone who does things. It doesn’t mean you’re terrible. It means you’re visible. Being open to criticism doesn’t mean giving the world a heckler’s veto. It’s ok to do things even if you’re imperfect and sometimes people are angry at you.

Civility is not the same as affect

Real Social Skills

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.)

Short version: 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.

Conversations between people who disagree

Real Social Skills

Conversations between people who disagree with each other can be really difficult. They can also be tremendously valuable.

One reason that it’s hard is that it takes two to have a conversation.

Each person has to be prepared to listen to the other and be prepared to think about what they have to say. Each person has to respect the right of the other person to think for themself, and be prepared to accept the possibility that they will not be persuaded.

Without mutual willingness to listen and think, it’s not really a conversation. It’s just somebody (or multiple people) presenting demands. (There’s a time and a place for presenting demands, but they don’t generally lead to good conversations.)

Another difficulty in conversation between people who disagree is that some opinions can hurt to hear even if someone is expressing them completely civilly. This can be confusing in two directions:

It can be easy to think that someone is being mean when they’re not. If someone’s opinion hurts to hear, it can feel like cruelty even when they’re being completely civil.

What to do about this varies. Sometimes the right thing is to bear the pain for the sake of listening and learning. Sometimes the right thing is deciding that you’re not ready to hear this yet. Or any number of other possibilities. But it’s always important when this happens to recognize that it’s not the other person’s fault that the concept hurts to think about.

At the same time — it can be easy to make this mistake in the other direction. Sometimes people you disagree with are jerks. Sometimes, when you really want to be open to other opinions, it can end up being hard to tell that people are being mean. (And hard to remember that you don’t have to talk to mean people in order to be receptive to disagreement). Blaming yourself for someone else’s decision to be mean to you won’t lead to good conversations either.

I think it’s really important to learn to tell the difference, in both directions. I think important questions to ask are:

  • Do I feel ok about having a conversation with someone who disagrees with me on this topic right now?
  • Am I willing to listen to this person?
  • Am I willing to explain my views in a way this person can understand?
  • Does this person seem to be willing to listen to me?
  • Do they seem to be willing to explain their views in a way I can understand?

If the answers to any of those questions are no, it’s probably not going to be a very productive conversation. In some situations, it’s possible to fix this by changing your attitude and deciding to hear someone out. (And sometimes trying that is a really bad idea.) Often, the best thing to do is either find a new topic or a different person to discuss the topic with.

All of the skills involved in having conversations with people you disagree with get easier with practice. It gets easier to find disagreement bearable. It gets easier to tell the difference between people being mean and people expressing a difficult opinion. It gets easier to listen. It gets easier to tell when people are listening. It gets easier to explain things in a way that can be understood. It gets easier to learn from others.

These skills can be hard to acquire — and they’re really, really worth it.

Conversations get better when you focus on the conversations that you can have productively — and the range of possible conversations gets broader as your skills get better.

Short version: Discussing ideas you disagree with with people you disagree with is hard for a number of reasons. Under the right circumstances, it can also be highly worthwhile. Part of having good conversations is finding contexts in which they can happen productively. It gets easier with practice.

Triggers aren’t always rational concepts

Real Social Skills

Sometimes people talk about triggers as though as though being triggered means having an extreme reaction to something that it’s perfectly normal for most people to find upsetting.

Some triggers are like that. A lot of them are not.

Triggers can be things that make no apparent sense at all from the outside. They can be anything. For instance, someone might find teddy bears triggering. Or being spoken to in a reassuring tone of voice. Or a certain song. Or wearing a t-shirt.

They are not necessarily about concepts.

Having trauma-related triggers does not necessarily mean that someone will have an unusual amount of difficulty discussing upsetting topics.

Discussing the concept of abuse or the particular kind of trauma they experienced *might* be triggering, but it might not be.

For instance, someone might be triggered by the smell of popcorn, but comfortable discussing abuse and abuse prevention policy. Or any number of other combinations.

Knowing that someone has experienced trauma doesn’t mean that you know anything else about them. Not everyone who has experienced trauma gets triggered. People who do get triggered, get triggered by a range of different things. You generally are not going to be in a position to know this kind of thing about someone else unless they tell you.

Short version: Trauma-related triggers can be just about anything. They’re not necessarily conceptually related to difficult or politically charged topics. Some people who have triggers aren’t triggered by discussing the relevant concepts, but are triggered by otherwise-innocuous things they associate with their experiences. Trauma can be complicated and doesn’t always fit with the prevailing cultural narrative.

Executive dysfunction and teachers

Real Social Skills

we-aint-borntypical asked: Sorry if this is late, but how do I tell my teachers about my executive dysfunction and how it affects my ability to do assignments?

realsocialskills said:

I think the most important thing you can do is accept that the problem is real, and that it’s ok to need help.

It can be hard to accept that executive dysfunction is real. It can be very tempting to feel like if we just try harder or wait long enough, it will somehow work out. And some percentage of the time that does work — which can make it seems like it will *always* work if we try hard enough. But it doesn’t work that way, and expecting it to causes a lot of problems.

Executive dysfunction means that sometimes there are insurmountable barriers to doing things completely independently. Sometimes this can happen with things that our culture says are easy and that you may not have heard of anyone having trouble with. It can be hard to come to terms with that. It gets easier with practice.

More directly about managing relationships with teachers, I’ve found two things helpful: I try to err heavily on the side of asking for help as soon as I’m feeling stuck, and I also try to select instructors based on understanding and/or cognitive compatibility.

If you’re facing an assignment and can’t figure out how to make progress on it, it’s good to err on the side of asking for help immediately. This can be hard to do, especially if you feel ashamed or like you don’t have a good reason. It’s actually ok though, and it gets easier with practice.

It’s normal to need help sometimes, even if the reasons you need it are unusual. All teachers have students who need help. Good teachers understand this and consider needing help normal. (Not all teachers are good, but many are). A lot of teachers care about helping their students, and it’s usually a lot easier for them to do that if you ask sooner rather than later. (It also saves you the time you’d waste trying to do something impossible through sheer force of will.)

If you can, it helps to explain in concrete terms what you are having trouble with, and what you think would help. (If you don’t know what would help, the concrete request might be “Can we meet to talk about this assignment?”). I think that it usually helps to err on the side of talking about concrete problems rather than abstract concepts like executive dysfunction.

For instance, I think “I’m having trouble getting started on this assignment. Could you help me narrow down my topic?” is usually more effective than “Executive dysfunction makes this assignment hard for me, what should I do?”. That said, if the latter is the only way you can ask for help in a particular situation, don’t wait until you know a better way. It’s ok to ask for help imperfectly; it’s ok to need help even if you’re not sure what help you need.

Not all teachers will be good at helping you. Some won’t be willing, some some won’t know how. Some will be inconsistent. But a good percentage of teachers *are* skilled at helping. If you have a choice about who your teachers are, it’s good to err on the side of picking teachers who are good at helping.

Also, some teachers are going to be inherently more cognitively compatible with you than others. Different teachers do instruction and assessment differently. If you have a choice, it can be good to err on the side of taking classes with teachers who give assignments that are more reliably possible for you.

Aside from attributes of teachers — asking for help effectively is a set of skills. One of those skills is the emotional skill of feeling ok about the fact that you need help. Another is assessing what’s going on and figuring out what your needs are. Another is expressing it to teachers in a way that they can understand and act on readily. And there are other skills I’m not sure how to explain. No one is born knowing how to do these things, and they all get easier with practice.

Short version: Executive dysfunction makes school complicated. Taking classes with teachers who teach in a way that makes cognitive sense to you can help, when you have a choice. It can be hard to ask for help, and hard to feel ok about needing help. That’s a set of skills, and it gets a lot easier with practice.

“Challenging behavior” is not a technical term

Real Social Skills

In social services culture, “challenging behavior” is used as though it’s a technical term, defined as something like:

“culturally abnormal behaviour(s) of such intensity, frequency or duration that the physical safety of the person or others is placed in serious jeopardy, or behaviour which is likely to seriously limit or deny access to the use of ordinary community facilities”.

This is expressed in a way that sounds like a technical definition, but it isn’t really. It’s a value judgement.

If you take the definition of “challenging behavior” seriously, all of these things literally fall into it:

  • Participating in the Greensboro sit-in or the Montgomery Bus Boycott
  • Leaving an abuser when your culture considers it inappropriate to do so and is likely to respond with violence
  • Living in a homophobic culture that actively discriminates against gay people, and having a same-gender partner anyway

Defying cultural norms is usually dangerous. It’s not always wrong. Deciding whether an act of defiance is good or bad isn’t a technical question; it’s a value judgement. “Challenging behavior” isn’t an objective clinical term. It means that you’re judging that particular behavior is wrong and that you have a right to modify it.

I don’t think value judgements are wrong. I think they’re necessary and important. I also think it’s important to be honest about them. It’s easier to think clearly about the value judgements you’re making when you’re willing to admit that you’re making them.

Short version: “Challenging behavior” is used as though it’s a technical term. It isn’t. It’s a value judgement, and I think it’s important to be honest about that.

Physical boundaries and social distance

Real Social Skills

Boundaries kind of gets used as a buzzword. So I’m writing some posts about how I understand boundaries. This post is mostly about physical boundaries.

What I mean by boundaries is that people have things that are completely theirs, physically and emotionally. It’s important to respect what belongs to someone else, and not treat it like it’s yours. This is especially true of someone else’s body, their personal space, their thoughts, and their feelings. Respecting physical and emotional boundaries is part of respecting other people’s humanity.

People have the right to control what happens to their body. If someone doesn’t want you to touch them, it’s important not to, even if you really want to. And it’s important not to put pressure on them to change their mind. And that’s true whether or not your intentions are sexual. Platonic boundary violations are still boundary violations.

(This is slightly more complicated than it sounds. For instance, it’s usually considered insulting to refuse to shake hands with someone unless you have a really compelling reason not to (eg: if it’s physically dangerous). I will write more about nuances in the future. But on a basic level, this is how bodies and boundaries work. And, even if someone is being unreasonable, it’s still important to not touch them against their will.)

Some things that are not technically someone’s body follow similar principles. Clothing and jewelry that someone is wearing are like their body in this way. So are purses and wallets. Mobility and adaptive equipment (eg: a wheelchair or communication device) is *especially* like someone’s body. This is true even if someone isn’t touching their equipment (eg: if someone’s not sitting in their wheelchair right now, it’s still like part of their body and you still shouldn’t touch it unless they want you to).

Personal space is also like someone’s body. Getting too close to someone is like touching them without permission. Personal space is a bit hard to define, because it depends a lot on context and culture. For instance, it’s ok to stand closer to people in an elevator than in an empty hallway. It’s a kind of thing where you have to develop your judgement. (To an extent by trial and error; watching what other people are doing can also be helpful.)

When people are uncomfortable with how close you are to them, they are usually more likely to communicate this with body language than with words. If you’re interacting with someone and they look uncomfortable, it’s worth considering whether you might be standing or sitting too close. If you think you might be, it’s worth trying giving them a bit more space and seeing what happens.

Sometimes when people are uncomfortable with how close you’re standing or sitting, they try to fix this by moving away to a distance they feel comfortable with. If someone does this, it’s good to err on the side of assuming it’s intentional. (Particularly if they move further away more than once.) If you repeatedly get closer to someone when they’re trying to create more distance, they’re likely to regard it as a threat. From their perspective, they’re saying no and you’re doing it anyway.

It can be hard to learn to understand social distance, especially if you have trouble understanding body language. It’s also both possible and important.

Short version: It’s important to respect boundaries. One important boundary is a person’s right to control what happens to their body. An important part of this is to not touch people who don’t want to be touched. Some things a person might have are similar to their body. Standing too close to people is similar to touching them. Scroll up for more about how to tell where the lines are.

AAC does not replace nonverbal communication

Real Social Skills

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.

Short version: 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

Real Social Skills

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.

Short version: 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.