Some people communicate mostly in memorized phrases or allusions to stories and events.
It’s actually pretty normal to communicate in phrases and allusions. I think most people communicate that way at least some of the time. For instance, a lot of people make Shakespeare references in situations that have little or nothing to do with literature. A lot of prose and interpersonal communication happens that way.
This is interpreted very differently for some people than others. People without disabilities who mostly communicate in literal language are taken much more seriously when they make allusions and quotes.
When a nondisabled person says “The lady doth protest too much, methinks”, it’s assumed that they’re communicating and that what they say is meaningful. They are usually understood. This is the case even if there are no ladies present and they’re obviously not talking about a lady.
Similarly, when a nondisabled person says something like “A horse! a horse! my kingdom for a horse!”, this is understood as meaning something even if they obviously do not have a kingdom and are known to hate horses.
When someone with a disability communicates in exactly the same way, their communication is often written off as meaningless. It’s often seen as sensory seeking, or stimming, or a persversation, and having no communicative content whatsoever. This kind of communication is often ignored, and also often seen as a problem behavior to be extinguished by a behavior plan.
This is in part because there’s a widespread belief that autistic people are all hyper-literal and only understand literal language. That’s true of *some* autistic people. But there are also autistic people who have the opposite problem. There are people who find it nearly impossible to use literal language to communicate, but who can readily make references and use literary phrases. (This is true for other kinds of cognitive disabilities as well; it’s not unique to autism.)
People who can only communicate in references deserve to have their communication taken seriously. So do people who find references much easier than literal languages. Everyone else is allowed to use references to communicate; people with disabilities have the right to do so as well.
Here’s an example of a situation in which communication is often misinterpreted. Imagine a girl named Sarah:
- Sarah doesn’t say very many words reliably. She can usually say a few things like mom, food, want, home, and SpongeBob.
- Sarah watches SpongeBob a lot
- She wants you and other people in her life to watch it with her
- She says a lot of phrases from SpongeBob
- (Eg: “I’m ready!”, “One eternity later”, “SpongeBob, you and I both know you’re just using me as a distraction so you don’t have to write your essay”, “Why is it whenever I’m having fun it’s wrong?”, “I’m ugly and I’m proud!”)
- Sometimes, the assumption is made that her repetitive phrases are preventing her from developing standard language
- Or they might think that TV is preventing her from developing standard language and that her access to TV is limited
- Or they might think that she’s perseverating on SpongeBob in a way that’s preventing learning
- When maybe what’s going on is that SpongeBob is *teaching* her language and communicative concepts, and she’s trying to use them to communicate
- If so, she should probably watch more TV, not less
- And it’s really important for people in her life to listen to her
- And understand the references she’s making and what they mean to her
- (Watching the shows with her is probably an important part of that; showing her other shows might be too)
- If you want someone to communicate, you have to listen to them, even when their communication is unusual
A lot of this post about listening to people whose speech is unusual applies in this situation too.
tl;dr Repeated phrases are often meaningful. Some people with disabilities communicate mostly in memorized phrases and references and allusions to stories and other things. Nondisabled people are taken seriously when they communicate this way. Disabled people who communicate in references should be taken just as seriously. (Even when they don’t communicate in literal language very often or at all).
I’m trying to find out more about the Floortime-DIR approach. (It’s a therapy mostly used for autism).
I’m also trying to find out more about Intensive Interaction, which seems to be at least somewhat similar.
I haven’t been able to find anything written by people who have experienced either approach as a client.
Have any of y’all received either Floortime-DIR or Intensive Interaction therapy? If so, would any of y’all be willing to talk to me about your experiences?
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.
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.
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.
One common response to criticism of ABA is to claim that people subjected to it enjoy it:
- “My child loves his therapist and asks to go to sessions!”
- “All of my clients smile and have fun!”
- “My ABA is play based!”
What people forget is that affect is a set of behaviors, and that behavior modification methods work as well on affective behaviors as they do on anything else:
- You can reinforce people to look happy
- You can reinforce people to praise therapy
- It doesn’t have to be an explicit part of the behavior plan to happen
- And it can keep happening even after you fade direct prompts or direct intentional reinforcers
ABA programs give the therapist massive power over the person. That power in itself can cause people to look happy, through a more subtle reinforcement mechanism than takes place on a behavior plan:
- If you have power over someone in the way that behavior therapists do, they’re going to be highly motivated to please you
- If they figure out that you want to believe that they are happy, they are very likely to act like they are
- If you treat them better when they display the affect you want or praise you, they’re likely to act happy.
- It doesn’t mean they’re actually happy
- Or that what you’re doing is good for them
(Also, affect often is an explicit part of someone’s behavior plan. It is not at all uncommon for ABA programs to involve actively ignoring distress and withholding attention and rewards until someone looks happy. It is not at all uncommon for ABA programs to involve teaching people to smile, to hug, or to otherwise do things that would out-of-context indicate happiness, enjoyment, or affection. It doesn’t have the same meaning if it’s prompted or trained.)
Also, programs based on positive reinforcement involving controlling someone’s access to stuff they care about:
- The first step in a program based on positive reinforcement is to find out what someone most enjoys or cares about
- (This is called a preference assessment or a reinforcement inventory. Here’s an example.)
- And then making sure they have no access (or limited access) to those things outside of sessions or other situations in which someone is actively reinforcing them to do something
- Of course if someone’s only access to everything important to them happens in sessions they will ask for sessions
- That doesn’t mean they like the fact that someone has that level of power over them
- (No one likes being manipulated that way.)
- That doesn’t mean they like the things that the therapist makes them do
- That doesn’t mean the power dynamic is harmless
- That doesn’t mean ABA is a good approach to teaching
People who can’t say no, can’t say yes meaningfully. Looking happy isn’t meaningful if you’re rewarded for affecting happiness and punished for looking visibly distressed. Making the best of a bad situation isn’t consent.
Anonymous said to realsocialskills:
Hi! I’m autistic, and I’ve never dated anyone, although I have been asked out before. Truthfully, I’m terrified of dating or being in a relationship, because I’m almost 18 and I’ve never even kissed anyone before, and I’m embarrassed!
I’m a pretty attractive girl and very good at hiding my autism, so people are interested in me at first, until I totally mess up flirting because of my social awkwardness.
Can you tell me what dating/relationships are like, so I know what to expect/how to act? thanks!
I can’t answer this directly because dating and relationships are different for everyone. They aren’t about scripts; they’re about building something with another person that works for both of you. I don’t know what they will be like for you. That is something that you will figure out as you get more experience.
But I can tell you some related things:
It’s ok to be embarrassed. Figuring out dating is embarrassing for most people. That doesn’t mean that you can’t date or have relationships. It just means that you will be embarrassed sometimes.
Flirting is at least sort of embarrassing even when it’s working. Figuring out whether or not someone is interested in you is at least somewhat embarrassing for almost everyone. Flirting is a way to make the process of figuring it out more pleasant than embarrassing.
Flirting effectively is a bit like learning to play the violin — just like initial attempts to play the violin sound terrible, initial attempts to learn how to flirt tend to be acutely embarrassing. That’s ok. It doesn’t mean something is wrong with you. It just means that there’s a learning curve.
Also — it’s not unusual to be 17 and not have kissed anyone yet. Sometimes the way people talk about teenagers can make it sound like everyone is dating and having sex, but it’s not true. Some people are, and some people aren’t. Both are ok. A lot of people your age haven’t kissed anyone. And the people who are kissing others also get embarrassed and unsure of themselves.
(It would also be ok even if it was unusual. It’s ok if some things are harder or take longer for you than they do for most people.)
Many of the skills involved in romantic relationships are the same skills involved in friendship. And one of the most important skills involved in friendship is figuring out how to tell whether you like someone, and whether they like you.
Figuring out whether you like someone can be hard for a lot of autistic people. Among other reasons, a lot of us are taught that we have to be friends with anyone who will tolerate our company. That’s not how dating works and it’s not how friendship works either.
If you don’t like someone, you shouldn’t date them. If you don’t like spending time with someone, you shouldn’t date them. If you’re hoping that they will change dramatically, you shouldn’t date them. It’s only a good idea to date someone if you like them and enjoy their company as they are now. You can’t build a good relationship with an imaginary person.
Similarly, it’s important to only date people who like you. People who are hoping that you will change, or who want you to act nonautistic all the time, are not people who like you.
You can’t become nonautistic to please people who find autism repellant, and you aren’t going to be able to hide autism from them forever. It always becomes noticeable sooner or later, because autism affects you and your experiences and impairments matter. You are who you are, and your disability is part of that. And that’s ok, because disabled people can date, and we can do it well.
The most important thing to know about dating and relationships is that, in good relationships, the people involved like and respect each other. Respecting and liking yourself is an important part of learning to build a mutually respectful relationship. Liking yourself helps you to like others; and to tell whether others like you. Respecting yourself helps you to learn to treat others respectfully; and to understand whether or not the ways others are treating you are ok.
From the way you phrased your ask, I think that you might be having a lot of trouble feeling ok about yourself as an autistic person. I think that it would help you a lot to work on understanding that it’s ok to be autistic, and that you can be a fabulous autistic human being.
It sounds to me that you think that you have to pass as non-autistic to be dateable. You don’t have to do that. Autism doesn’t prevent kissing and it doesn’t prevent love.
A lot of autistic people struggle to feel worthy of love and friendship. A lot of us feel repulsive a lot of the time. We’re often made to feel that our thoughts, feelings, interests, and body language are disgusting flaws. But they are not. We’re ok. Being autistic is ok.
We are beautiful. The way we look and the way we move and the way we think is beautiful. Autistic beauty is real, and there are people in the world who appreciate it.
We are often taught that, unless we learn to pretend that we’re normal, no one will ever like us. (That’s the basic message of the Social Thinking curriculum, for instance). We’re also often taught that we’re not allowed to make mistakes. A lot of us feel like every time we make a social mistake, it’s showing that we’re deeply flawed and hopelessly unworthy.
That makes dating really hard, because everyone makes acutely embarrassing social mistakes as they learn how to date. (And often even after they have a lot of experience.). It sounds to me like you might feel like you have to earn the right to date by never making any embarrassing mistakes. You don’t. If that was the standard, no one would ever be able to date. It’s ok to be fallible and embarrassed and unsure of things. You’re ok.
There are people who will appreciate your beauty. There are people who will find you attractive. There are people who will love you.
You can learn how to date, and you can do it as yourself.
Anonymous said to realsocialskills:
I thought your post about kids with autism was great… but tbh I feel like a lot of autism resources ignore autistic people who are less self aware? For example, my sister, who has autism and is unaware of it + cannot speak… where are the resources that apply to her?
How can I help and support her? I feel like people with autism like her are frequently ignored in these kinds of posts.
Remember how much you don’t know:
- You can’t really say definitively that your sister isn’t aware of autism
- There is no reliable way to assess receptive language in someone without reliable expressive communication
- Ie: You know that your sister can’t talk; you don’t know what she understands
- Some tests can show that someone *does* understand language, but they can never show definitively that they *don’t*
- Your sister may understand language; she may not. There’s no reliable way to be sure
- It’s important to keep both possibilities in mind
- Dave Hingsburger wrote a couple of good posts about interacting with nonspeaking people who may or may not understand language here and here
Keeping in mind the possibility that she understands language (or that she might be able to learn how to use language):
- Talk to her like she understands
- Tell her about things you think she might want to know (including autism)
- Tell her that you can what she thinks, and that you know she might understand you
- When you make choices related to her, explain them to her
- Tell her what’s going on and what’s going to happen, whether or not she demonstrates understanding
- Have books around about things she might want to know about
- Turn the TV or radio to things you think she might be interested in
- If she’s a child, put her in educational settings in which she’s hearing lessons on grade-level material, whether or not she’s able to demonstrate comprehension
- Keep trying for communication support
Regarding communication support:
- There are a *lot* of different things to try
- A month-long trial is not long enough to determine whether a communication strategy will work for someone
- Some people can use a system right away; some people need months of being shown how it works and experimentation before they can use it
- You don’t have to use simpler systems before you can do more complex things
- One of the things you should try is a high-tech AAC system based on core vocabulary.
- Speak For Yourself has some advantages over most other systems (including that they have good resources for people supporting family members without much professional support)
- This is a good post on the importance of trying things, with some suggestions of things to try. (It’s written by a parent of a young child, but it’s also relevant for people supporting older children or adults).
- Human-supported systems like a PODD book work better for some people
- Signed languages like ASL work well for some people
- The Rapid Prompting Method works for some people nothing else works for. (It’s particularly effective for people with severe apraxia or severe attention problems.)
- Multi-sensory systems like Makaton also work for some people (but systems that allow for more open forms of communication are better)
- tl;dr There are a *lot* of approaches to supporting communication, and it’s important to keep trying to find one that will work for her
Keep in mind the possibility that she does not understand language, or that she needs help understanding it:
- She might not understand words
- She might need pictures or symbols to help her understand words
- She might need simplified language (but don’t make *everything* simplified, because that might not be what she needs. It’s a guess)
- Whether or not she understands language, she does think, and her thoughts matter
- She likes and dislikes things, and that matters too
- (Self-awareness and language aren’t the same thing)
Make room for stuff she cares about:
- If you think she likes, cares about, or is interested in something, find ways of making that thing available to her
- Even if it’s things like watching the same clips on YouTube over and over, or spinning things.
- If those things are important to her, then they’re important
- Create opportunities for her to try new things. (Not forced. But like, offer her different kinds of food and books and stuff to watch on TV and places to go.)
- Let it be an end in itself
- Don’t make everything she likes into therapy
- And *especially* don’t make everything she likes into a reinforcer to get her to do what you want
- She has the right to like things, be interested in things, and have time that is her own
Help her to find a peer group:
- If she doesn’t know any other autistic people, that’s a problem
- If she doesn’t know any other nonspeaking people, that’s a problem
- If the only time she spends with other disabled people is in tightly regimented special education or therapeutic settings, that’s also a problem
- It’s important for disabled people to have the opportunity to meet and interact with other disabled people
- This is particularly important for disabled people whose communication is thoroughly atypical.
- Eg: there may be other autistic people who readily understand her body language
- Not all disabled people will be friends, and it’s important not to force it
- It’s also important to create opportunities
- (And to make sure she’s seen pictures and videos of other people who look like her.)
Find ways of listening to her:
- Whether or not she uses language, she’s communicating some things in some ways
- Find ways of listening to her
- Pay attention to what she does, and how she’s reacting to things, and what you think she might mean
- (Do keep in mind that you’re guessing — it’s easy to misunderstand nonverbal communication when someone has no words or unambiguous symbolic gestures to correct you with).
- Tell her, through words and actions, that you care about understanding what she’s telling you
- Eg: Say explicitly things like “I think you are trying to tell me something. I’m not sure what you mean, but I’m trying to understand.”
- Then when you think you know what she means, don’t ignore it; act on it
- Whether or not she understands your words, it’s likely that saying them will help her to understand that you care. (It will also remind you to care).
- The more you work on listening to her, the more often you will understand her communication
Creative arts therapists might be helpful:
- Some creative arts therapists (particularly music therapists) do good work with nonspeaking people
- They can often find expressive and receptive communication that others don’t find
- They can also help to figure out what someone likes
- (Make sure the person you go to isn’t also a behaviorist. Behavior therapists are not good at this and they tend to cause other problems).
Share what you know about her communication:
- If others think she doesn’t communicate, tell them what you know or suspect about her communication
- Sometimes they will use what you tell them to communicate with her
- Even if they don’t believe you, the fact that you think she communicates will often make them treat her better
Don’t make decisions for her that she can make for herself:
- eg: If she understands what clothing is and can pick a shirt, don’t decide for her which shirt to wear
- If there are different kinds of food, don’t pick for her; ask her what she wants
- If she’s in a social setting with other people; don’t prompt her into interacting with particular people. Being nonspeaking doesn’t make you the boss of her social life.
- Just generally, don’t script everything. Respect her space and see what she initiates and chooses.
- And if she needs help choosing, don’t take over; offer support
- Eg: If she’s overwhelmed by the number of shirts she has, try picking up two and asking which one.
tl;dr If someone doesn’t speak, it’s important not to assume they’re unable to understand language — and also important not to assume that they do. In either case, it’s important to listen to them, speak to them respectfully, work on finding ways to support their communication, make room for their interests, and respect their decisions.
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.)
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:
- It may help to notice when repetition is communication and lend them words when they don’t have enough of their own
- And to notice other differences in the way some people use language
- And also to realize that, for some people, spending some of their time unable to speak or unable to use language can be important
- And other things about different ways people experience speech
- Ultimately though, if someone doesn’t have reliable ways to use complex language clearly, they need access to better communication support (AAC), and if you’re their parent or otherwise responsible for them, it’s important to help them get it.
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.
Some autistic people (and some others) have trouble with voluntary control over their bodies. This can involve having trouble initiating movement, or having a lot of uncontrolled movement, or a combination of both.
This often gets called stimming, but it’s different from some of the other concepts stimming is used to mean. It’s not the same as flapping your hands because you’re excited, or rocking back and forth, or squeezing a stress ball because it feels nice or helps with focus.
This is one thing it can look like:
- Wanting to read a book
- Having developed the motor skills necessary to hold books and turn pages
- Not currently being able to read the book because, right now, your arms won’t stop thrashing around and it’s hard to make contact with the book and when you do, your fingers won’t go where you want them and turn the pages
- And maybe you end up throwing the book if you keep trying really hard to read it
For some people who get out of control like that, doing any sort of purposeful motion can help to regain control faster.
- wadding up paper into a ball
- drawing circles
- typing scripted phrases or random nonsense
- lining up objects
- repeating a word over and over
- or any number of other things
- doing something familiar and purposeful can often help a lot
This isn’t universal among autistic people, and it’s not universal among people with movement disorders. It’s something that some people experience.
Acceptance is important. It’s one of the most crucial skills disabled people can develop. We have to learn to see ourselves as we are, and accurately
Acceptence is constantly, constantly undermined from a number of directions.
One of the most insidious things undermining acceptance is contact with people who speak in positive terms, but don’t believe in our abilities or agency even a little.
They will often call what they are doing acceptance, while at the same time doing everything in their power to convince us that disability means that we are fundamentally incapable of doing anything, that we shouldn’t try, and that we should just let them take over and run our lives.
This is fairly common in a certain kind of toxic parent community. (It’s also a common abuse dynamic in relationships between adults). Here’s part of the parent version:
Sometimes when parents say “My child is perfect the way she is,” what they really mean is “I don’t want my child to gain any skills that will enable her to separate from me, and I’m going to make sure she doesn’t.”
Some parents like this will give their disabled child anything but respect. For instance:
- Some parents will give nonverbal children anything they point to
- And will supply a lot of whatever their child expresses interest in
- But no matter how old their child gets, they never stop treating them like a toddler. Even when they’re well into adulthood
- And they don’t teach them about the world
- Or talk to them about anything complex
- Or try to find out what they think about anything more complicated than which objects they like
- And won’t do anything to give them access to more complex communication
- They will say that there’s no need for that, because their connection with their child is so deep that they understand everything they mean
- That’s not true. Loving your child doesn’t make you a mindreader. Here’s a good post by a parent on the damage that approach does.
- Even if parents infallibly knew what their child was thinking; kids need to be able to communicate with people other than their own parent
- (Particularly since most children outlive their parents, and kids who can only communicate with their parents eventually end up unable to communicate with anyone)
Some parents will do anything for their disabled child — so long as it doesn’t run the risk of their child becoming more autonomous and less dependent on them. Eg:
- Some parents prefer to carry disabled kids who are capable of learning how to walk
- Some parents will put a lot of effort into making sure they’re always available to push their kid in an adaptive stroller, but adamantly refuse to get them a wheelchair they can propel themselves
- Some parents will spend massive amounts of time putting their kids into complex outfits daily — and refuse to buy them any clothing that they can put on and take off independently
Some parents will allow their disabled child to do anything — except show consideration for others or develop reciprocal relationships not orchestrated by parent’s script. Eg:
- They’ll allow their kid to boss people around at home, but they won’t let them go to any other kid’s house, ever, claiming that it’s somehow unsafe (even if their kid doesn’t have complex medical needs)
- (Parents who do this often also do things like recruit children to come over and act like friends according to the parent’s script. For instance, by playing a game with their child and letting them win.)
- Sometimes children who get overloaded hit people, are embarrassed, and want to apologize for hitting. Parents in this mindset tell them that it’s ok, that they couldn’t help it, and that they shouldn’t worry about it and definitely shouldn’t apologize.
Doing this kind of thing is not disability acceptance, even if the one doing it describes everything in flowery language. Sabotaging a child’s independence is not acceptance. Forcing a child into dependency is not acceptance. Destroying a child’s ability to engage in reciprocal relationships is not acceptance. Treating an adult as a child is not acceptance. Treating a disabled adult as a puppy or a plant is not love. That kind of stuff is just ableism.
People who say things like that aren’t accepting us as people. They’re saying that we’re not full people, and that they get spiritual satisfaction from having unpeople around.
We’re people. All the way down. Real acceptance is about seeing us as full human beings, acknowledging the impact disability has on us, and committing to finding ways to accommodate disability.
tl;dr Treating disabled children and adults like puppies or toys is never ok, even if you call it acceptance and positivity.
I’ve seen a lot of parents express concern about their kid watching the same clips over and over on YouTube, or watching shows they’ve seen before over and over, or similar.
I think that a lot of people are under the impression that watching the same videos repeatedly is an inherently meaningless activity. It’s not.
Here are some purposes repeated video watching can serve:
- Sometimes the world is very confusing
- Going back to something familiar can make the world less confusing
- It can also remind you of feelings that it is possible to have and ways that it is possible to express them
- For some people, all of this is really important
Focusing or averting overload:
- Noise can be really overloading or distracting for some people
- So can silence
- So can new things
- Having a familiar video on can be a really effective way for some people to avert overload and/or stay focused
- This is meaningful and important. It’s important to be able to be comfortable and think clearly.
Noticing new things
- The video is the same every time, but the person watching it isn’t
- When you watch it over and over, you see new things
- It can be conceptual things like coming to interpret the story in a new way
- Or sensory things like noticing sounds and colors that you never noticed before
- This kind of repetition and examination is meaningful, and can be a great joy
Receptive and expressive language:
- People who communicate by repeating words and phrases can get more words and phrases, and more meaning out of the phrases they have, by watching the same video over and over
- Watching the same video over and over can also be really good for receptive language
- It can be practice listening to things
- The meaning stays the same, and watching it over and over can be a way, over time, come to understand the words in it better
- This is also true of body language - in a video, you can watch the body language over and over and come to understand it
- There’s also far less pressure to already understand. In interactions with people, you upset them if you don’t get it. Videos don’t need you to understand them – you can try as many times as you need to and take as much time as you need without anything bad happening.
tl;dr It’s not cause for concern if a kid watches the same videos over and over. Adults do it too, and it serves a purpose. Watching the same things over and over can be valuable and important.
Anonymous said to realsocialskills:
You know, I follow this blog because I think it’s cool and although I don’t really read your advice posts, I can see they’re very respectful and well thought out. That aside, I want to ask: how do you feel about labeling autism as a disability?
I feel very strongly that it is important to refer to autism as a disability. It’s not just a difference; it’s a particular kind of difference, and that kind of difference is called disability.
There are all kinds of things that most people take for granted that autistic people can’t do, or struggle with, or can only do intermittently. Autistic people face ableist discrimination in response to not being able to do those things, or being perceived as not being able to do those things.
We have all of that in common with people with any other kind of disability. Acknowledging that allows us to learn from and collaborate with one another. Denying that we’re disabled just isolates us.
I think that every single thing I’ve written about autism has been reblogged by someone with another kind of disability saying “I can relate to this too”. As a result, my writing has become increasingly cross-disability. We have a lot in common.
If we try to separate ourselves from other disabled people, we lose a lot. Overlapping disability communities have a lot in common, and a lot of built up tools for dealing with disability, dealing with discrimination, and supporting one another. If we admit that we’re disabled, we can be part of that. If we don’t, everything gets a lot harder.
tl;dr I think that autism is a disability and that admitting that makes life a lot better for autistic people.
Autistic people are autistic all the time. Sometimes some difficulties fade into the background, then come back out again when someone is particularly stressed out. This is true across the board for sensory issues, communication issues, movement, and all kinds of other things. (This is also true for people with any other kind of disability).
The intermittent nature of some apparent difficulties can sometimes lead to them being misinterpreted as psychosomatic. They’re not. Everyone, autistic or not, has more trouble doing things that are hard for them when they’re experiencing significant stress. Some things are particularly hard for autistic people, and those things also get harder with stress.
This is how it actually works:
- Doing the thing always takes a lot of effort
- Putting in all that effort has become second nature
- When you’re not exceptionally stressed, you might not notice the effort it takes consciously
- When you *are* really stressed, you don’t have energy to do the thing in the ways you normally can
- So you end up having more trouble than usual, and probably looking a lot more conspicuously disabled than usual
For instance, with motor issues:
- For those of us with motor difficulties, moving smoothly and accurately takes more effort than it does for most people
- This can become second nature, to the point that we don’t consciously notice how difficult it is
- But it’s still there
- And when you’re really stressed or overwhelmed, you may not have the energy to make yourself move accurately
- So things you can normally do (eg: handwriting, not walking into walls, picking up objects, pouring water) might become awkward or impossible
- That doesn’t mean you’re faking or somehow doing it on purpose
- It just means that things are harder when you’re stressed
Or with sensory issues:
- Living with sensory sensitivities means that a lot of things hurt
- For the sake of doing things anyway, a lot of us build up a high pain tolerance
- To the point that we may no longer consciously process things as pain even though they hurt
- Ignoring pain takes a lot of energy
- When we’re really stressed, we may not have the energy to ignore pain
- And things we normally tolerate can be experienced as overloading or intolerably painful
- That doesn’t mean we’re faking the pain to avoid something stressful, or that we’re somehow bringing it on ourselves.
- It just means that everything is harder under stress, including tolerating pain
Or with communication:
- Communication can be hard for a lot of us in varying ways
- For some of us, being able to speak requires juggling a lot of things that are automatic for most people
- Or being able to use words at all, including typing
- For some of us, that’s true of understanding people when they talk to us
- Or of knowing what words are at all
- If someone can’t talk, understand or use words under stress, it doesn’t mean that they’re somehow faking it to avoid a difficult situation
- It means that communication is hard, and stress makes everything harder
tl;dr Stress makes everything harder. For people with disabilities, that includes disability-related things, including things that we don’t normally seem to have trouble with. Sometimes we’re wrongly assumed to be doing on purpose or faking to avoid a difficult situation; it should actually be seen as an involuntary, normal, and expected physiological response to stress.
Autistic people and other people with cognitive disabilities are often interpreted as doing things for attention, whether or not that explanation is plausible.
- Alice is autistic. She flaps her hands.
- Hand flapping is part of Alice’s body language. She moves her hands to express a large range of thoughts and feelings, just like some people move their facial muscles to express a broad range of thoughts and feelings
- Alice also sometimes flaps her hands to calm down when she is overloaded
- Bernice is a behaviorist. She is distressed about the fact that Alice flaps her hands.
- Whenever Alice flaps her hands, Bernice stares at her, and pays intense attention to the fact that she is flapping her hands
- Bernice notices that every time Alice flaps her hands, Bernice pays attention to her
- Bernice concludes that her attention is reinforcing Alice’s flapping behavior
- Bernice concludes that Alice’s hand flapping is an attention-seeking behavior
- Bernice puts Alice on a behavior plan based on ignoring her whenever she flaps her hands
Behaviorists and others make this mistake a lot. They very, very frequently assume that the fact that they are paying attention to something means that it is being done to get their attention. It doesn’t. It just means they’re paying attention.
Starting at someone whenever they do something doesn’t mean that they’re doing it because they like being stared at. It just means that you’re staring at them.
tl;dr Stop calling everything attention seeking behavior. The fact that you’re paying attention to something doesn’t mean that someone is doing it because they want your attention. Not everything a person who has a developmental disability does is about you.
You are not your child’s voice. Even if they can’t speak. Even if you understand some of their communication. Even if you fight hard battles to get others to respect and support them.
Even if you need to say things on their behalf that they’re not able to say. Even if you’re currently the only effective advocate they have.
No matter how much you care about your child, no matter how much you get right, you’re not them. They have a perspective of their own, and they disagree with you on some things. (Because they’re people, and no two people agree on everything.)
You are not your child's voice. You can only speak from your own perspective. You are not them. And you’ll be a more effective and respectful advocate if you keep this in mind.
content note: This post is about the broad (inaccurate) perception that people with disabilities are faking, and ways that forces some people with disabilities to partially misrepresent the exact nature of their disability. Proceed with caution.
Some people without disabilities believe that there are massive numbers of people faking disability, and that they must be caught and stopped. People who believe this usually don’t know very much about what disability actually looks like. They tend to assume that anyone with a disability who has non-stereotypical abilities is faking their disability.
Real disability often doesn’t look like stereotypical disability. For instance, many wheelchair users can walk, and many people who have service dogs can read, and many people have different abilities on different days depending on their energy and pain levels. This doesn’t mean that they are faking. It just means that their combination of abilities and disabilities don’t look like media tropes, because they are real people.
People with non-stereotypical disabilities can be in a very difficult place when dealing with people who think this way. It’s a pervasive problem, and people with a misplaced dedication to rooting out fakers often have a lot of destructive power over people who need disability-related support.
Being thought of as faking can mean that you lose accommodations. It can mean that you lose services that you need in order to survive. It can mean you get harassed. It can mean people are violent.
Sometimes, people with disabilities have no realistic option other than to allow people to believe that they fit these stereotypes:
- On a college campus, every dorm except one is completely inaccessible.
- The main entrance to the partially accessible dorm has stairs
- There is an accessible entrance for employees and residents with disabilities, but it’s always locked
- In order to get a key, you have to convince Fred the building manager that you need one
- Fred is very suspicious of disability claims, and is constantly trying to catch people faking disability
- Fred believes that anyone using a wheelchair who can walk, stand, or even move their legs, is a faker who needs to be called out and prevented from using accessibility resources (if you don’t know why he’s wrong, read this post)
- Wheelchair users who need access to that building are careful to give Fred the impression that they are completely unable to walk or stand. They never stand in front of him, or in a place where he might turn up unexpected. They carefully avoid referencing their ability to stand to anyone who might repeat it to Fred.
- They may even have to outright lie about this in order to prevent Fred from taking away their access to the only door they can use. (eg: If Fred asks them directly, or rants about fakers, or makes them fill out an intrusive form).
- Many, many people have strong attachments to stereotypical ideas about how disability works
- They tend to think that people who don’t fit those stereotypes are faking disability
- Most people with disabilities don’t fit disability stereotypes particularly well
- It’s often dangerous for people with disabilities to be perceived as faking it
- That’s a hard situation, because:
- There may be times when you know that if you describe your abilities and access needs completely accurately, people are likely to think that you are faking
- But if you somewhat misrepresent your abilities in a way that fits the stereotype, then they’ll believe you about your real access needs
- Which can put you into the awkward position of having to choose between representing the nature of your disability fully accurately and being thought of as faking, or allowing people to inaccurately believe that you fit a stereotype and being believed
- That’s degrading on a level it’s hard to understand if you haven’t experienced it
- It’s also a common experience among people with disabilities, and if that’s what you’re dealing with, it’s not your fault.
Some additional examples:
- Some people who can write a little bit by hand are careful not to write in front of most people, so they they will not be assumed to be capable of the kind of writing that is completely impossible for them
- Some people who are not autistic but have similar support needs due to less well-known conditions end up with an inaccurate autism diagnosis in order to gain access to services that they absolutely need in order to access education or to survive
- Some people with both physical and cognitive disabilities allow others to assume that they are more physically disabled than they really are as a way of getting their cognitive access needs met without having to face certain kinds of cognitive ableism
- Some people who can speak only a few words are careful to avoid speaking in front of most people, lest someone decide to take away the communication system they need to communicate things that can’t be expressed in their few spoken words
If you have a disability and you are not free to describe it fully accurately lest you lose accommodations, lose services, or face frightening harassment, know that you are not alone. A lot of people with disabilities experience this at some point or other. It’s humiliating and corrosive to go through, and it may make you feel like you are faking or that your needs are imaginary. It helps to remember that this is not actually your fault.
You are not faking, and your needs matter. You are a real person with a real disability doing the best you can in a hostile world. You are not alone, and it helps to remember that. There are other people with disabilities who are there, or who have been there, who understand that struggle.
tl;dr People with disabilities are often forced to pretend to meet stereotypes in order to get their very real needs met. This is humiliating and degrading. If you’re dealing with that, it’s not your fault and you’re not alone.
Anonymous said to realsocialskills:
I find it very difficult to communicate myself verbally sometimes, to the point where I get frustrated and actually cry. It’s like, I can’t find the right words quick enough and it all comes out in jumbles. How can I improve my social skills when it comes to speaking?
I think I’m going to write a few posts about this, because there are a lot of things that can help. But in this post, I’m going to talk about backup methods of communication:
For many people for whom speech is unreliable, having another method of communication to fall back on is gamechanging:
- Speech isn’t the most important thing
- Knowing that you will be able to communicate is the important thing
- If fear and frustration is a reason that speech becomes difficult for you, knowing that you will definitely be able to communicate might in itself improve your ability to speak
Having a backup method doesn’t mean you have to use it all the time:
- You might get stuck at one point in a conversation, type a bit, then resume speaking
Some possible backups:
Pen and paper:
- If handwriting is reliable for you, it might help to carry around a pen and paper
- That can allow you to write instead of speaking
- Or to write a few words to unstick yourself
- The advantages of this is that it’s cheap, low-tech, and readily available
- (And most people have used paper to pass notes in a situation where they didn’t want to speak, eg: in a class, so it might not even look that odd)
- You can also use this to draw diagrams or drawings illustrating a point. (even if it’s not a point that’s usually illustrated that way.) Having a non-words-based way of explaining things can help a lot.
An iPad (even without any special apps):
- If you have an iPad, it might be worth making a point of carrying it with you all the time
- You can take an iPad out relatively quickly and type on it just in the Notes app
- (I do this)
- You can even do text-to-speech this way. If you go to the general settings, then accessibility options, you can turn on text to speech. There are voices for a lot of languages; not just English.
You can also use iPads, paper, and computers as a stealth form of communication support:
- If you pretend you’re taking notes, people generally won’t question it
- You can then type out many of your responses before you say them
- That can separate the process of figuring out what to say from the physical act of saying it
- That can make speech far more possible for some people
- (I do this more or less constantly in classes, seminars, discussion groups and certain kinds of meetings).
An iPad with decided communication apps:
- There are a lot of dedicated communication apps for iPads (most of the good ones are expensive).
- If part of your problem is that you lose words or forget the kinds of things that it’s possible to say, a communication app might help
- Proloquo2Go has a lot of flexibility and good symbol support. If you have trouble with words and need symbols to remind you, it might be a good option.
- You can make dedicated pages for situation in which you tend to have trouble communicating.
- Making the pages also might in itself help you to map out things you can say in various situations, even if you aren’t able to use them directly.
- Speak4Yourself isn’t very flexible at all, but it has icons arranged in a way that’s well thought-out. It’s designed to work with muscle memory, having the words in the same place all the time so that your hands remember where you are. If you sometimes need help even with simple words and don’t need specialized pages, it might be a very cognitively user-friendly option.
- Proloquo4Text is a text-based AAC app. It can store phrases in categories to access quickly, and has very high-quality word prediction. You can also make the display text very large if you’d rather show your screen than use a computer voice.
tl;dr If you have trouble with speech and get overloaded, it’s a good idea to have a backup communication method. Scroll up for some concrete suggestions.
Anyone else want to weigh in? What helps you when you get overwhelmed and can’t find the words?
“And it’s a big problem, because the way they talk…..they think the problem was that they treated their child like they were intellectually disabled, and they weren’t. But that’s not the problem. The problem is that they thought their child was intellectually disabled,and so they didn’t treat them like a person.”
This is a really important post that explains a big problem with cognitive ableism among some people who say “presume competence”.