listening

Babysitting a nonspeaking four year old

Question from an anonymous reader:

I regularly babysit a 3 (almost 4) year old who has Autism. He does not speak, and he doesn't yet have a reliable alternative form of communication like signing or AAC, though he probably will soon.

 I have a lot of friends and two cousins who have Autism, but they all speak or sign. I find it difficult sometimes to understand what the kiddo in question is thinking, or wants, and I wondered if you or any of your followers have any first hand tips or advice on how I could better understand him? 

I know everyone is different, and I'm learning to read things like his body language, but I wondered if you/any of your followers who don't speak or spoke later than most remember anything that helped them get across what they meant when they were younger, or things adults did that were especially helpful. He doesn't have the coordination to sign or draw what he wants yet, being so little. I want to help him feel less frustrated and to be as good a babysitter as I can be.

Realsocialskills answered:

For the sake of readability, I’m going to call your cousin Anthony in this post. 

The first thing I’d say is: Listening to Anthony matters whether or not you succeed in understanding him. You may not be able to figure out what he is thinking, he may not yet be able to tell you — but you *can* treat him as a person who has thoughts and feelings worth listening to. That matters in and of itself, and it also makes successful communication much more likely.

Learning to communicate is really hard, even for typically developing kids. (Which is a reason why two year olds have so many tantrums, and why older kids usually grow out of that.) In early childhood education, a lot of what kids learn is that it’s possible to communicate in ways that others can understand — and that words are usually a better option than freaking out. One of the main ways early childhood educators teach kids these skills is by listening to them, and by supporting them in understanding the feelings they’re having. 

Kids with communication disabilities have more trouble learning to communicate in ways that others can understand — and they also often have more trouble learning that communication is even possible. Disabled kids need *more* exposure to adults who want to listen to them, and *more* support in understanding their feelings — but they often get less of both. Their feelings are often ignored, and their communication is often treated as nonexistent. 

All too often, kids with disabilities learn young that no one wants to listen to them. They often try their best to communicate, only to have their attempts interpreted as random meaningless noise or deviant misbehavior. When nobody listens, it becomes really hard to keep trying. One of the best things you can do for Anthony right now is help him not to give up.

It’s important to keep in mind that Anthony is a person with a perspective of his own. Our culture socializes us to see people with disabilities as having needs, but not thoughts or feelings. That implicit bias goes really deep for almost everyone, including AAC experts and long-time disability rights activists. Be careful to treat Anthony as a person with thoughts, feelings, and questions. This is a profoundly countercultural attitude. You can’t assume that it will happen by itself; you have to do it on purpose. (I did a presentation on this for medical providers a while ago which may be of interest.  )

Some specific things you can try:

Say explicitly that you’re trying to understand, eg:

  • “I don’t understand you yet, but I’m listening”.
  • “I’m not sure what you mean, but I do care”.
  • It doesn’t go without saying — and sometimes saying it makes a big difference!
  • Look for actions that might be intended as communication:
  • Does he point at things? Lead you to things? Flap differently under some circumstances?

Make a guess about what you think he might mean, and act on it.

  • It can be worth using words to describe what you’re doing, eg:
  • “I think you want the book because you’re looking at the book. I am getting the book”.
  • “I think the light is bothering you because you’re covering your eyes. I am turning off the light.”
  • He can’t read your mind, so it might not be obvious to him that you’re acting on what you think he’s doing — so tell him!

Name feelings you think he might be having, eg: 

  • “Susan took your truck. You are mad.”
  • “You like the marbles. You are happy.”
  • “Jumping is so fun!”
  • “You don’t like that texture.”
  • (Nb: Telling *adults* what they are feeling in these terms is usually *not* a good idea, but it’s a pretty common method used to help little kids learn about feelings — *if* you know with reasonable certainty what their feelings are.)

Ask questions, and offer choices, eg:

  • “Do you want the red shirt or the blue shirt?”
  • “Should we read the princess book or the truck book?”
  • “Should we go to the swings or the sandbox?”
  • Even if he can’t respond, being asked matters — it shows him that you care what he thinks, and that there’s a reason to try to communicate.

It can help to make the options more concrete, eg:

  • He might be more able to tell you which shirt he wants if you’re holding both of them. 
  • Or if you’re holding one in one hand and one in the other.
  • Or if you put them down in front of him.

If he responds to your question in a way that you think might be communication, respond to it as communication: 

  • Eg:  “You pointed to the dragon book, so we’ll read the dragon book”.
  • Or it may make more sense to just start reading it. Sometimes that works better than inserting too many words. 
  • Eg: “Ok, we’ll go to the park”.

You can also try yes-or-no questions:

  • “Do you want to go to the park? Yes or no?”
  • “Do you want to read the dragon book? Yes or no?”
  • “Is the dragon scary? Yes or no?”
  • “Is the king silly? Yes or no?”
  • Again, even if he can’t respond in a way you understand, trying matters.

You also might be able to teach him to point to things:

  • Pointing doesn’t require motor skills on the same level that writing and drawing do.
  • Again, in the two book example, you can ask him to point to the one he wants.
  • You can also show him pointing by doing it yourself, eg:
  • Take two books, and say “I choose the dragon book”, point to it, then read it.
  • Take two books and ask him “Which book do you choose?”
  • (Etc: It can take some time and trial and error to figure out how to teach this in a way that sticks, but it’s often worth trying.)

If he has a way to communicate “yes”, and “no” or choose between options, you can also check your guesses more directly:

  • “I think you said park. Am I right?”
  • “Did you say park, or something else?”
  • “Are you trying to tell me something, or are you playing?”

Remember that words can be communication even when they’re unusual: A lot of autistic people use idiosyncratic language to refer to things, or repeat phrases they heard somewhere else – in a way that they may or may not mean literally. Here’s a method for noticing when repetition is communication , and some thoughts on listening to folks whose speech is unusual.

Give him time to process and respond:

  • The standard teaching advice is: When you ask a question, wait at least seven seconds before you say anything else.
  • This feels a little unnatural — it can feel like a *very* awkward pause, and it can be tempting to jump in and say more stuff to clarify.
  • But if you say more stuff to someone who is thinking and formulating their answer, it tends to just give them *more* stuff to process. 
  • So give him time to respond — and be aware that autistic people often need longer to process and respond.

If you have an iPad you’re willing to let him play with, iPad use can really help some kids with motor skills and learning communicative cause-and-effect.

  • Most kids learn pretty quickly how to scroll through select the app they want, and that skill often transfers.
  • Most kids that age like Endless ABC, a really fun pre-literacy words-and-spelling app. https://www.originatorkids.com/?p=564
  • (That app also builds an association between interacting with a touch screen and making meaningful sounds)
  • You can also try the Toca Boca apps — a lot of kids like those, and some, like Toca Hair Salon, don’t require particularly strong motor skills.
  • Often, the best way is to play with the app together — eg, you show them how to drag the letters around, then offer them a turn.
  • Or help them out when they get stuck, without taking over.
  • Or say things like “which color should we pick? How about purple?” and see how they react.

Don’t expect AAC to fix everything:

  • Everything in this post still applies once he gets a device or a system.
  • An AAC device is just a tool. It’s one mode of communication, which might be useful for him under some circumstances.
  • Having an AAC device will not make him instantaneously able to communicate using words in the way that typically-developing kids his age do.
  • While some people learn to use an AAC device fluently very quickly, that is rare. 
  • Most people who use AAC because of a childhood speech delay take a long time to learn it.
  • And in any case, giving someone a tool doesn’t cure their disability. 
  • An AAC user with a communication disability still has a communication disability, and disabilities that interfere with speech sometimes also interfere with language. 
  • Even people *without* language disabilities tend to take a while to learn, for all the same reasons that typically-developing kids take a while to learn how to use words to express themselves. Communication takes practice.
  • (And also, all existing AAC technology has significant limitations and difficulties. It’s easier for typically developing kids to learn to speak than it would be to learn to use AAC, and having a speech disability doesn’t magically make AAC use easy.)
  • AAC implementations can also end up treating AAC use as an end in itself and forget that the point is to support communication. 
  • For most AAC users, AAC is one communication mode among many they use, and it’s not always the best one in every situation — eg: pointing to a banana can be a *much* more efficient way to communicate than scrolling through a device and finding the “I” “want” and “banana” buttons.
  • If Anthony gets an AAC system, he will still need you to put effort into listening to him, and he will still need you to take all of his communication seriously.

Remember that disability isn’t bad behavior, and don’t be mean:

  • Don’t ignore his communication in order to force him to talk or use a system.
  • The best way to encourage communication is to listen!
  • He’s not struggling to communicate because he’s lazy; he’s struggling to communicate because he has a disability.
  • He’s doing something really hard, and he’s in a hard situation, and that needs to be respected and supported.
  • You don’t need to introduce artificial difficulty; he is already experiencing more than his share of the real kind.

Anyone else want to weigh in? What is helpful for effective communication with a nonspeaking four year old? You can answer using my contact form.

 Tl;dr If you’re babysitting a kid who has trouble with communication, the most important thing you can do is listen to them. Scroll up for some specific options. 

Image description: Text "Kids with communication disabilities need to know that you care about listening to them", next to a picture of a young child and a picture of some plastic duplo-style building blocks.

Image description: Text "Kids with communication disabilities need to know that you care about listening to them", next to a picture of a young child and a picture of some plastic duplo-style building blocks.

The rules about responding to call outs aren’t working

Privileged people rarely take the voices of marginalized people seriously. Social justices spaces attempt to fix this with rules about how to respond to when marginalized people tell you that you’ve done something wrong. Like most formal descriptions of social skills, the rules don’t quite match reality. This is causing some problems that I think we could fix with a more honest conversation about how to respond to criticism.

The formal social justice rules say something like this:

  • You should listen to marginalized people.
  • When a marginalized person calls you out, don’t argue.
  • Believe them, apologize, and don’t do it again.
  • When you see others doing what you were called out for doing, call them out.

Those rules are a good approximation of some things, but they don’t actually work. It is impossible to follow them literally, in part because:

  • Marginalized people are not a monolith. 
  • Marginalized people have the same range of opinions as privileged people.
  • When two marginalized people tell you logically incompatible things, it is impossible to act on both sets of instructions.
  • For instance, some women believe that abortion is a human right foundational human right for women. Some women believe that abortion is murder and an attack on women and girls.
  • “Listen to women” doesn’t tell you who to believe, what policy to support, or how to talk about abortion. 
  • For instance, some women believe that religious rules about clothing liberate women from sexual objectification, other women believe that religious rules about clothing sexually objectify women. 
  • “Listen to women” doesn’t tell you what to believe about modesty rules. 
  • Narrowing it to “listen to women of minority faiths” doesn’t help, because women disagree about this within every faith.
  • When “listen to marginalized people” means “adopt a particular position”, marginalized people are treated as rhetorical props rather than real people.
  • Objectifying marginalized people does not create justice.

Since the rule is literally impossible to follow, no one is actually succeeding at following it. What usually ends up happening when people try is that:

  • One opinion gets lifted up as “the position of marginalized people” 
  • Agreeing with that opinion is called “listen to marginalized people”
  • Disagreeing with that opinion is called “talking over marginalized people”
  • Marginalized people who disagree with that opinion are called out by privileged people for “talking over marginalized people”.
  • This results in a lot of fights over who is the true voice of the marginalized people.
  • We need an approach that is more conducive to real listening and learning.

This version of the rule also leaves us open to sabotage:

  • There are a lot of people who don’t want us to be able to talk to each other and build effective coalitions.
  • Some of them are using the language of call-outs to undermine everyone who emerges as an effective progressive leader. 
  • They say that they are marginalized people, and make up lies about leaders.
  • Or they say things that are technically true, but taken out of context in deliberately misleading ways.
  • The rules about shutting up and listening to marginalized people make it very difficult to contradict these lies and distortions. 
  • (Sometimes they really are members of the marginalized groups they claim to speak for. Sometimes they’re outright lying about who they are).
  • (For instance, Russian intelligence agents have used social media to pretend to be marginalized Americans and spread lies about Hillary Clinton.)

The formal rule is also easily exploited by abusive people, along these lines:

  • An abusive person convinces their victim that they are the voice of marginalized people.
  • The abuser uses the rules about “when people tell you that you’re being oppressive, don’t argue” to control the victim.
  • Whenever the victim tries to stand up for themself, the abuser tells the victim that they’re being oppressive.
  • That can be a powerfully effective way to make victims in our communities feel that they have no right to resist abuse. 
  • This can also prevent victims from getting support in basic ways.
  • Abusers can send victims into depression spirals by convincing them that everything that brings them pleasure is oppressive and immoral. 
  • The abuser may also isolate the victim by telling them that it would be oppressive for them to spend time with their friends and family, try to access victim services, or call the police. 
  • The abuser may also separate the victim from their community and natural allies by spreading baseless rumors about their supposed oppressive behavior. (Or threatening to do so).
  • When there are rules against questioning call outs, there are also implicit rules against taking the side of a victim when the abuser uses the language of calling out.
  • Rules that say some people should unconditionally defer to others are always dangerous.

The rule also lacks intersectionality:

  • No one experiences every form of oppression or every form of privilege.
  • Call-outs often involve people who are marginalized in different ways. 
  • Often, both sides in the conflict have a point.
  • For instance, black men have male privilege and white women have white privilege.
  • If a white woman calls a black man out for sexism and he responds by calling her out for racism (or vice versa), “listened to marginalized people” isn’t a very helpful rule because they’re both marginalized.
  • These conversations tend to degenerate into an argument about which form of marginalization is most significant.
  • This prevents people involved from actually listening to each other.
  • In conflicts like this, it’s often the case that both sides have a legitimate point. (In ways that are often not immediately obvious.)
  • We need to be able to work through these conflicts without expecting simplistic rules to resolve them in advance.

This rule also tends to prevent groups centered around one form of marginalized from coming to engage with other forms of marginalization:

  • For instance, in some spaces, racism and sexism are known to be issues, but ableism is not.
  • (This can occur in any combination. Eg: There are also spaces that get ableism and sexism but not racism, and spaces that get economic justice and racism but not antisemitism, or any number of other things.)
  • When disabled people raise the issue of ableism in any context (social justice or otherwise), they’re likely to be shouted down and told that it’s not important.
  • In social justice spaces, this shouting down is often done in the name of “listening to marginalized people”.
  • For instance, disabled people may be told ‘you need to listen to marginalized people and de-center your issues’, carrying the implication that ableism is less important than other forms of oppression.
  • (This happens to *every* marginalized group in some context or other.)
  • If we want real intersectional solidarity, we need to have space for ongoing conflicts that are not simple to resolve.

Tl;dr “Shut up and listen to marginalized people” isn’t quite the right rule, because it objectifies marginalized people, leaves us open to sabotage, enables abuse, and prevents us from working through conflicts in a substantive way. We need to do better by each other, and start listening for real.

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?

Learning to listen

One of the reasons this blog is called “Real Social Skills” is that the skills needed in order to listen to people with disabilities are not seen as “social skills”. 

Disabled people who communicate in unusual ways are usually seen as having a social skills problem. People who don’t understand what disabled people are saying are *not* usually seen as having a social skills problem. The disabled person is almost always blamed. It doesn’t have to be like this; it’s a problem with our culture; this is something that we can change.

Listening to other people (disabled or not) involves a lot of skills. No one is born knowing how to understand what others are communicating — we all have to learn how to listen. And we’re never done — there is always more to learn about listening and understanding other people. We should all have an expectation that learning skills for listening to people who communicate atypically is part of that. No one is too young or too old to learn to listen. 

For instance, all of these things are listening skills:

  • Understanding what someone who has a heavy CP accent is saying
  • Maintaining a conversational rhythm with someone who takes longer than most people to process or express themself
  • Having a conversation with someone who doesn’t make eye contact, and figuring out alternative ways to tell when they are and aren’t paying attention
  • Noticing when repetition is communication 
  • Understanding the indirect communication of people who can only use the limited core vocabulary words available on their communication devices
  • Giving someone who has been through intense compliance training the space they need to express their own thoughts rather than yours
  • Paying attention to what someone who speaks oddly is saying rather than writing it off as rude or cute 
  • Listening to someone who has both communicative and non-communicative speech, and figuring out which words are and aren’t intended as communication
  • Listening to someone who has both voluntary and involuntary motion, and figuring out which gestures are and aren’t communication
  • And so on.

No one is born with fully-developed listening skills. Learning to listen effectively is a lifelong process. Learning to listen to people with communication disabilities needs to be part of that.

Listening to me is not appropriation

People sometimes worry that reading my blog is somehow appropriative or inappropriate. I’ve been seeing people say this a bit recently, so I thought I’d say again that I don’t want people to worry about that. 

I don’t expect everyone who reads my blog to be like me. I’m assuming that y’all are different from each other and coming from a lot of different perspectives. And that’s how I want it to be.

I hope that people will find what I say useful. I want people who learn something useful from me to use what they learn, regardless of the reason they find it useful. One of the things that I’ve found most rewarding about writing this blog is that many of the things I’ve written with autism or something in mind have been useful to a lot of other people for a lot of other reasons.

I want people to listen to me. Not just autistic people or disabled people. Anyone who is willing to listen.

Listening means thinking seriously about what I say, which means that you may or may not agree.

I don’t want people to assume that I’m right because I’m disabled or whatever else. I want people to listen to me, and think for themselves. There is no real listening without the possibility of disagreement. And sometimes I’m wrong, and when I’m wrong, I want to learn and understand things better.

tl;dr: You don’t have to be a particular kind of person to read my blog, reblog from me, or have opinions about what I say. Please don’t worry about appropriation. 

Access straw men

A lot of people are reluctant to change anything for the sake of accessibility, even if the change would be inexpensive and easy. Often, they resist even considering the possibility that there are changes they could make that would enable a broader range of people to participate.

Often, they set up access strawmen as a way to avoid negotiating access. 

Those conversations go like this:

  • The disabled person asks for a modification of some sort.
  • The resistant person ignores the actual request.
  • They instead describe something vaguely related that’s obviously unreasonable.
  • Then they insinuate that the disabled person asked them for the obviously unreasonable thing
  • They implore the disabled person to be more flexible and reasonable
  • The disabled person generally doesn’t get their needs met, and often ends up disoriented and feeling a lot of shame

An example:

  • Douglas: I can’t climb stairs. I need class to be held in a room on the first floor.
  • Roger: It sounds like what you really need is for all the buildings to be rebuilt for you. I can’t rebuild all the buildings; I have to focus on teaching.

Or sometimes:

  • Dawn: I can only read lips if people are looking at me. Can we talk about how to make class discussions work?
  • Robin: I can’t stop other students from talking to each other. Why don’t you take this opportunity to work on your listening skills?

When a person with a disability asks for an accommodation in school, work, a conference, or wherever, don’t set up a straw man to reject. Respond to the actual problem, and try to find a solution. Is there  a way to do the thing they’re asking for? If not, why not? Is there something else you *could* do that would work? Occasionally there is no good solution; more often, there is a way to make things work. When people in positions of responsibility are willing to look for access solutions and put effort into implementing them, a lot of things become possible.

AAC does not replace nonverbal communication

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

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

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

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

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

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

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

AAC is not a cure

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

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

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

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

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

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

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

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

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

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

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

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

In defense of nonverbal communication

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

I think this is a mistake.

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

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

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

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

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

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

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

Tell people you care what they are saying

Anonymous said:

Another speech-impediment related question: Usually my ability to understand speech is perfect, but it deteriorates rapidly if a person has an accent or talks lowly, so I spend a lot of time smiling and nodding politely.

I feel bad about this with everybody, but especially if a person has a speech impediment or disability accent.

But to understand I’d have to ask people to repeat themselves three or four times for every sentence. Do you have any advice?


realsocialskills says:

Basically what I think about this is:

  • It’s ok not to understand people. That is not your fault.
  • Listening is important. It’s (usually) not ok to ignore people.
  • It’s not usually ok to pretend you understand someone when you don’t (unless you need to protect yourself)

Being honest about what’s going on makes communication much easier:

  • People don’t like being ignored
  • If you smile and nod, people can usually tell that you’re not really listening
  • They can’t tell why, because they can’t read your mind
  • As far as they can tell, you’re ignoring them because you don’t care what they’re saying

It can help to be be explicit about what the problem is, and what you think might solve it.

Eg:

  • “I’m sorry — I care about what you’re saying, but I’m having trouble understanding. It’s hard for me to understand low pitched voices - would it be possible to speak at a higher pitch?”

Or:

  • “I’m having trouble understanding your voice, but I’d like to listen. Would it be better to write things down, or should I ask you to repeat, or something else?”

Also, if there’s a particular accent you’re encountering a lot, it’s likely worth spending some time working on your ability to understand it. If it’s a particular foreign accent, one way to do that is to watch videos or shows in which people speak in that accent, and turn the captions on.

And just, generally speaking, this gets easier with practice. Once you get more experience listening to people with the accent you’re having trouble with now, you’ll probably understand more readily and not have to ask for as much repetition.

Solidarity can be better than comfort

ischemgeek said to :

Advice on expressing sympathy and lending emotional support to a family member whose child may be facing a serious illness? Both for the “dunno for sure” phase and for the “know for sure either way” phase. Comforting is not my strong suit and halp plz because this can’t be fixed so soothing is only way to be helpful.

realsocialskills said:

So, I’m going to answer this in two parts. This post is about emotional support.

I think that most people who are facing emotionally devastating situations need solidarity more than they need comfort.

One way to show solidarity is to acknowledge what’s going on, and to let them feel however they feel about it. People in awful situations often face relentless pressure to try to have a ~positive attitude~ and not be upset. This is particularly true of child illness, particularly if the illness is life-threatening, particularly if it is cancer.

This positivity narrative pressures people to think that they can somehow fix things with the power of positive thinking, and that they will somehow ruin things if they get upset or have feelings that aren’t 100% hopeful at all times. That can make things a lot harder.

People often end up feeling a lot of pressure to put on a positive and hopeful face around people who care about them. They also often face pressure to be constantly trying not to be upset. They can end up spending a lot of emotional energy taking care of the needs of people who want to comfort them.

And in reality — people facing difficult situation are going to struggle and have complicated feelings. And, in this case: People who have reason to suspect that their child is seriously ill have every right to be upset and afraid. And the last thing they need is relentless pressure to think positive and feel hopeful.

Probably the best form of emotional support you can offer is to listen without trying to make them feel better. You can acknowledge what is going on, and be someone who they don’t have to gloss over things with. You can be there with them while they feel however they feel about it. You can be someone who listens to them respectfully.

Many people facing awful situations don’t have that, and having it can make a big difference.

I wrote a while back about the importance of acknowledging that sometimes things are terrible, and also about some practical methods of listening to someone who is facing a bad situation.

tl;dr If someone is facing a bad situation, trying to comfort them often backfires. It often works better to focusing on listening to them and expressing solidarity.

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.

Safety vs making people feel safe

There are all kinds of affective things and cognitive tricks you can learn that make it more likely that people will trust you and feel safe.

It is possible to get really, really good at that without actually learning how to be trustworthy. You can be really, really good at making people feel safe, and still be a danger to people who trust you.

Sometimes it’s not a good idea to focusing on trying to make people feel safe.

Often, it’s much better to focus on learning how to be trustworthy. Two major components of being trustworthy are paying close attention to practical safety; and listening to the people whose safety might be impacted.

For example:

If you want to know what’s dangerous, it’s important to seek out the perspectives of people you’re trying to create safety for. This isn’t something you can do completely on your own.

Part of this is seeking out writing about danger and safety by members of the affected group, or advocacy organizations run by members of the affected group. Another part of this is listening to the individual people who you are actually interacting with about their needs.

It’s important to communicate effectively about the things you are doing that might make trusting you a good idea.

It’s important to talk about safety improvements to make sure people know about them. (Eg: if you fixed a dangerous ramp, people need to know that it has been fixed). It’s also important to communicate your willingness to listen to people about their needs and fix things that are endangering them. It has to be true, and you have to do things to communicate that it’s true. It does not go without saying; willingness to listen and address safety issues in practical terms is actually fairly uncommon.

If you focus on practical safety through proactive research and listening to affected members of your community, you can get very far in building safe and welcoming community even if people do not feel safe.

Some people who do not feel safe still care very much about being there, and are willing to take risks in order to participate. It’s important to honor and accept that.

Some people aren’t ever going to feel safe. (And some of them will be right.) It’s important to accept them as they are, and not make feeling safe a prerequisite for participating.

tl;dr “Making people feel safe” is often the wrong approach. Focusing on being safe often matters a lot more. Some people don’t believe that they are safe, and are willing to take risks in order to participate. They should be allowed to have that perception. They should not be pressured into feeling safe as a prerequisite for participation.


7 second rule

If you’re leading a group discussion or teaching a class, it’s important to pause for questions periodically. Part of pausing for questions is giving people time to react before moving on. People can’t respond instantaneously; they need time to react. If you don’t give them time to react, it can give you an inaccurate impression of their level of interest or engagement.


Eg:

  • Leader: Does anyone have any questions?
  • Group: …
  • Leader: Ok, moving on. 

When this happens, it’s not usually because no students had questions. It’s usually because the teacher didn’t give them enough time to process before moving on. It doesn’t actually take a huge amount of time, but there has to be some. A good amount of time to wait is seven seconds. If you wait seven seconds before moving on, someone will usually say something.


Seven seconds can feel like a really long time when you are teaching. It can feel like an awkward empty space that, as the teacher, you’re supposed to be filling. That can lead to interactions like this:

  • Leader: I just said a controversial thing. What do you think of the thing?
  • Group: …
  • Leader (immediately):… none of you have opinions about this?
  • Group: …
  • Leader: (immediately):… Really? No one?

When this happens, it’s usually not that no one had anything to say. It’s usually that the leader or teacher kept interrupting them while they were trying to get words together and respond. It’s easy to inadvertently do this, because it feels like you’re supposed to be doing something to get your students to respond. But, often, the best thing you can do to get them to respond is to wait and give them space to do it in.


It helps to remember that as the teacher or leader, you shouldn’t actually be taking up all of the space. You should also be offering your students some space and listening to them, and allowing them to ask you questions so they can understand. It’s ok if that space isn’t immediately filled; no one can react instantaneously. 


If you wait seven seconds every time you pause for questions/responses, it gives people time to process, and some people will become capable of participating who weren’t before.

Not everyone is mean

Mean people take up a lot of space.


Mean people often make their voices heard the loudest.


If you are around a loud mean person, it can be hard to remember that kind people exist.


It can feel like the world is all mean people, and that they’re all yelling at you.


But, not everyone is mean. A lot of people are kind and caring.


When you notice the kind people, and make an effort to listen to them, it’s much harder for the mean people to drown out their voices.

squidids:

realsocialskills:

People often say that when you’re comforting someone else, you shouldn’t mention your own similar experiences. I understand that making the conversation entirely about you is rude and imappropriate, but isn’t it ok to at least briefly say, “yeah I can relate” and then continue with “that sucks a lot” etc?
realsocialskills said:
 
Bringing in your own experiences can actually sometimes be a good thing. There’s a specific way of doing it that’s bad, but you are entirely correct that showing ways you can relate can sometimes be good.
 
I wrote a post a while back about listening to someone who is facing a bad situation that talks about good and bad ways to relate your own experiences.
 
And I want to add to that: You’re probably seeing a lot of people vent on the internet about thoughtless or otherwise bad things people said to them. That could make comforting someone who is struggling seem very intimidating; it could make it seem like you have to be sure you’re going to say the right thing before it’s ok to talk to them.
 
And it doesn’t work that way. You don’t have to be perfect to comfort someone. Sometimes, you’ll say the wrong thing. That’s ok. Everybody does, sometimes. It’s good to work on knowing what to say and how to say it, but be careful about worrying too much about that. You can really only get good at this through practice, and you can’t get practice by waiting until you’re absolutely sure you know the right thing to say before you offer anyone support.
 
Suffering can be very isolating, because people are often afraid of seeing people suffer in ways they can’t fix. Sometimes things aren’t ok, and aren’t likely to be ok any time soon, if ever. And if someone’s in that situation, chances are they’re surrounded by people who are trying to get them to feel better.
 
If you’re not trying to make them feel a different way, you’re willing to acknowledge that things are hard, you’re listening to them, and you’re treating them with respect, you’re probably doing fairly well. Even if you sometimes say the wrong thing.

squidids said:

Good: “I am sorry to hear about your grandmother. When my grandmother died, [blah blah blah].”

Bad: “I know how you feel about your grandmother. When my gerbil died, [blah blah blah.]”

Good again: “It’s okay that you’re still grieving about your grandmother. I still feel awful thinking about my gerbil that died, and losing a grandparent will naturally be even harder.”

Using your experiences to support someone else

Anonymous said:
People often say that when you’re comforting someone else, you shouldn’t mention your own similar experiences. I understand that making the conversation entirely about you is rude and imappropriate, but isn’t it ok to at least briefly say, “yeah I can relate” and then continue with “that sucks a lot” etc?

realsocialskills said:   Bringing in your own experiences can actually sometimes be a good thing. There’s a specific way of doing it that’s bad, but you are entirely correct that showing ways you can relate can sometimes be good.   I wrote a post a while back about

listening to someone who is facing a bad situation

 that talks about good and bad ways to relate your own experiences.   And I want to add to that: You’re probably seeing a lot of people vent on the internet about thoughtless or otherwise bad things people said to them. That could make comforting someone who is struggling seem very intimidating; it could make it seem like you have to be sure you’re going to say the right thing before it’s ok to talk to them.   And it doesn’t work that way. You don’t have to be perfect to comfort someone. Sometimes, you’ll say the wrong thing. That’s ok. Everybody does, sometimes. It’s good to work on knowing what to say and how to say it, but be careful about worrying too much about that. You can really only get good at this through practice, and you can’t get practice by waiting until you’re absolutely sure you know the right thing to say before you offer anyone support.   Suffering can be very isolating, because people are often afraid of seeing people suffer in ways they can’t fix. Sometimes things aren’t ok, and aren’t likely to be ok any time soon, if ever. And if someone’s in that situation, chances are they’re surrounded by people who are trying to get them to feel better.   If you’re not trying to make them feel a different way, you’re willing to acknowledge that things are hard, you’re listening to them, and you’re treating them with respect, you’re probably doing fairly well. Even if you sometimes say the wrong thing.

Listening to people who have disability accents

People with certain disabilities often have heavy disability accents. Their speech can sound very different from the way most nondisabled people speak.

People with disabilities that affect communication are often pushed into separate programs, particularly in adulthood. Even when they are in the same classes in the same schools, there isn’t much of an expectation that any peers listen to them. This was even more true a generation ago. As a result, most people without disabilities are lousy at understanding people with disability accents, and don’t understand that this is a glaring hole in their social skills.

Many unskilled people tend to maybe ask people with disability accents to repeat themselves once, and then they get frustrated and start ignoring them. Sometimes they pretend to understand, and smile and nod rather than actually listening. Sometimes they hang up on them. Sometimes they pass them off to another person, who also doesn’t bother to actually listen. Sometimes they hang up. If they are medical workers, sometimes they write on a chart that someone is impossible to understand or has no communication (particularly if that person also has an intellectual disability.)

Do not be this person. If you can’t understand someone with a disability accent, the problem is your skills, not their voice. (If you have a receptive language disability that prevents you from learning to understand accents, then it’s no one’s fault and you need an interpreter to communicate. Neither their voice nor your brain is wrong. In that situation, the skill you need to develop is finding an interpreter. EDITED TO ADD: I got this part somewhat wrong, and someone reblogged it with an important addition).

If you listen, and make it clear that you are listening, you will learn to understand, and you will be able to communicate successfully with more people. 

An important phrase for this is “I’m having trouble understanding what you’re saying, but I care what you are saying.”

Make sure it’s true, and keep listening. The more you listen, the easier it will be to understand. Understanding . And practice. You get better with practice.

Too many people are ignored because others can’t be bothered to understand their accents. You can make this better by listening (and by insisting that people you supervise listen.)