Tag: autism

Autism stereotypes and Not Autism Syndrome

Real Social Skills

People who have rare developmental disabilities are often misdiagnosed with autism.  This happens in part because a lot of disabilities look similar in early childhood. When kids with undetected rare genetic conditions start ‘missing milestones’, they are often assumed to be autistic.

When people are assumed to be autistic, autism stereotypes get applied to them. They’re often assumed to be uninterested in people and communication, and they’re often put into ABA programs prescribed for autistic people. They face the same kind of degrading and damaging misunderstanding that autistic people do.

When advocacy organizations address the issue of misdiagnosis, they tend to say some form of “It’s important to distinguish between autism and Not Autism Syndrome, because demeaning autism stereotypes only accurately describe autistic people.”

Here’s a Rett Syndrome example:

“The child with RTT almost always prefers people to objects, but the opposite is seen in autism. Unlike those with autism, the RTT child often enjoys affection.”

And a Williams Syndrome example:

“Unlike other disorders that can make it difficult to interact meaningfully with your child, children with Williams Syndrome are sociable, friendly and endearing. Most children with this condition have very outgoing and engaging personalities and tend to take an extreme interest in other people.”

Statements like these suggest that the problem with autism stereotypes is that they’re applied to the wrong people. The thing is, demeaning autism stereotypes aren’t true of anyone. We all have feelings and thoughts and the capacity to care about things and relate to other people. Accurate diagnosis matters, but not as a way of sorting out who is and isn’t fully human. We’re all fully human, and no one should be treated the way autistic people are treated. We shouldn’t pass around stereotypes, we should reject them.

On solving the right problem

Real Social Skills

Not every problem disabled people have is a failure to understand social situations.

Sometimes the problem is that our bodies are considered socially unacceptable.

No amount of social skills training will change our bodies.

No amount of social understanding will make typical movement and typical speech physically possible.

No matter what we learn, bodies and brains matter. We’re still disabled when we understand things.

It’s ok to be disabled. It’s not ok to be bigoted against disabled people.

If we want to get anywhere, we need to make sure that we’re solving the right problems.

Autistic people can have friends

Real Social Skills

One reason I started writing this blog is that I got tired of seeing social skills programs teach autistic people that they have to become normal in order to have friends.

It’s not true. There are a lot of autistic people who have friends without becoming remotely normal. Oddness and friendship are entirely compatible.

You can be autistic, seem autistic, and have friends who like you and enjoy your company.

Some people won’t like you, and that’s ok. Not everyone has to like everyone.

Some people will dislike you because they are bigoted against autistic people. That’s not ok, but it doesn’t have to ruin your life. Ableists don’t speak for everyone. Those people aren’t your friends. Other people can be.

You’ll probably always face ableism. Trying to be normal probably won’t make that go away; accepting yourself probably won’t make that go away either. You don’t need to change the whole world in order to have friends.

You can have friends as the person you are, in the world as it is now.

A problem with “behavior is communication”

Real Social Skills

In certain contexts, just about everything a disabled person does will result in someone following them around with a clipboard, taking notes on their behavior, and designing a behavior plan for them.

This is often called ‘listening to what the behavior is communicating’ or ‘keeping in mind that behavior is communication.’

I know that nothing I’ve ever done was intended to communicate ‘please put me on a behavior plan’. If anyone asked me, they would know with certainty that I don’t want them to do anything of the sort.

I’m not alone in this. Very few people would willingly consent to intense data collection of the kind involved in behavior analysis. Far fewer people would willingly consent to the ways in which that data is used to control their behavior. 

A lot of people never get asked. People do these things to them that very few people would willingly consent to — without asking, and without considering consent to be a relevant consideration.

Somehow, an approach that involves ignoring what someone might be thinking gets called ‘listening to what is being communicated’.

That is neither ethical nor logical. Behaviors don’t communicate; people do. If you want to understand what someone is thinking, you have to listen to them in a way that goes beyond what any behavior plan can do.

Collecting data is not the same as listening, modifying behavior is not the same as understanding what someone is thinking, and disabled people are fully human. 

Autistic people don’t all want boring jobs

Real Social Skills

Lately, I’ve been seeing a lot of variations on a story that goes “Autistic people love detail, and it makes them naturally well suited for repetitive jobs that most people find intolerably boring.”

This is usually said with great fanfare, and described as a step away from stigma and towards celebration.

But — autistic people don’t all have a convenient love of tedious tasks. Some of us find them as boring as everyone else does.

This model of “autistic strengths” celebrates us doing jobs everyone else hates. It has no room for us to pursue jobs that others want. We’re supposed to stay in a special place for special people, doing the boring tasks the ideology says we love — and making no trouble for the normal people who do the interesting jobs.

This isn’t ok, and it isn’t acceptance. Some of us like things that others don’t, but none of us should be forced into a box. Autistic people have the full range of interests, talents, and skills that anyone else does. We shouldn’t be tracked into jobs based on stereotypes. We have the right to decide for ourselves what to pursue.

When professionals assume that parents of disabled kids see ghosts

Real Social Skills

In the special needs service provision community, there is a strongly held narrative about what happens when a kid turns out to be disabled. This narrative causes a lot of problems.

According to this narrative:

  • Professionals believe that parents have a strong emotional attachment to the typically developing kid they were expecting.
  • They are usually in denial even about obvious signs of disability, and will hold on to their fantasy for as long as possible.
  • At some point, the parents are forced to confront their child’s disability.
  • They lose their fantasy of the child they expected, and this is emotionally devastating.
  • In order to move on, they have to mourn the loss of the child they expected and the life they expected.
  • Parents need emotional validation and help working through that.
  • All of this is very widely believed, and I think this model causes a lot of problems.

I think the grief model is a problem on several levels:

When parents are grieving for the child they expected, it’s really hard on the child they already have:

  • Children want adults in their lives to see them, approve of them, and love them.
  • When parents are seeing ghosts, they’re not seeing their real child.
  • Children can tell when adults in their lives are looking past them. It hurts.
  • When parents are mourning for the child they expected, they are disappointed by the child they actually have.
  • Children can tell when adults in their lives are profoundly disappointed in them. It hurts.
  • And it especially hurts when the child has no control over the things that are disappointing their parents.
  • While parents struggle to accept their children as they are, their children struggle to cope with being parented by people who do not yet find them acceptable.
  • That hurts. And it leaves scars.

Kids need support in navigating this, and they don’t often get it:

  • There is often a tendency to pretend that kids don’t know.
  • But disabled kids aren’t a separate species. They’re kids, and kids are almost always very sensitive to how adults in their lives feel about them.
  • Kids need people in their lives who see them, and not ghosts.
  • Kids need people in their lives who can accept and value them as they are.
  • Sometimes that can’t be their parents. Or can’t (yet) be their parents.
  • But it needs to be someone. (And their parents need to understand that their attitude towards their child affects their child)
  • If you work with kids in any capacity, it is likely that this person needs to be you sometimes.
  • Looking at the real child and seeing a person matters. Seeing them and not a ghost of someone you expected matters. Making it clear that you’re not disappointed in them matters.
  • If you can do that for kids you work with, it can prevent a lot of pain. (And can likely help their parents to come to a point of acceptance sooner.)

Further, not all parents actually feel this way:

  • The professional narrative about grief and mourning does not accurately describe all parents.
  • Parents of disabled kids have all kinds of feelings about their kids for all kinds of reasons.
  • Not all of these feelings are negative.
  • Even when parents have negative feelings, they’re not always grief.
  • Sometimes parents feel overwhelmed and confused about how to support their child.
  • (Or worried about how to afford the things their child needs).
  • (Or repulsed by things professionals are telling them to do to their children as therapy.)
  • Sometimes parents feel ashamed about not having noticed sooner.
  • Sometimes parents feel concerned that they may have caused their child’s disability.
  • Or any number of things.
  • Not all parent feelings are grief, and the full reality needs to be acknowledged

Parents are sometimes pressured into mourning when they weren’t already grieving:

  • The grief and mourning narrative is strong and pervasive.
  • Parents are often expected to describe everything they’re feeling as grief.
  • Parents are often not given any support in working through the other feelings and doubts they are having.
  • This can result in parents being pushed into a mourning process that wasn’t actually necessary for them.
  • It is very damaging to both parents and children when this happens.
  • It is not good to grieve for the living. When it’s avoidable, it should be avoided.
  • It’s important to be careful to avoid pushing parents into adopting a grief narrative unnecessarily.
  • (Sometimes it’s not avoidable, for reasons that aren’t anyone’s fault. But it’s often more avoidable than people realize.)

Short version: There is a pervasive professional narrative that says parents of disabled kids need to mourn for the child they were expecting before they can accept their real child. This isn’t always true, and parents are sometimes pressured into feeling and mourning through grief that they otherwise would not have experienced. When parents *do* mourn for their living children, that is emotionally devastating for the kids. Parents and kids both need much better support in navigating the disability acceptance process.

For another perspective on this, see Jim Sinclair’s classic article “Don’t Mourn For Us” (written about autism specifically.

Electronic books can make reading possible for people with executive dysfunction

Real Social Skills

Electronic books can be an important disability accommodation for a lot of people, including some people with normal vision. If you’re having a lot of trouble reading, or not reading as much as you’d like to, it might help to use electronic books.

There are a lot of steps involved in reading a print book. Some of these steps can be difficult or impossible for people with impaired executive function, autistic inertia, fatigue, chronic pain, or other conditions. Some difficult steps can be eliminated with electronic books.

In order to start reading a print book, you have to be able to do all of these things:

  • Have the book in a place where it’s available to you when you have time to read.
  • (Which can involve remembering to bring with you somewhere.)
  • (And keeping track of the book and not losing it.)
  • Decide to stop what you’re doing and do a different kind of task.
  • Figure out where the book is.
  • Go get the book.
  • Avoid getting distracted by other things as you find the book or get the book.
  • Figure out where you are in the book.
  • (Which can involve things like remembering the place.)
  • (Or using a bookmark, which comes with its own multi-step challenges like remembering that bookmarks exist and having one available.)
  • Open the book to the right page.
  • Avoid getting distracted by other parts of the book.
  • Get into a position in which you can read, which you can also sustain long enough to read for a significant among of time.
  • Actually start reading the book.
  • If you want to take notes or highlight, you also have to gather all your note-taking tools.
  • And not get distracted and forget what you’re doing.
  • And not forget where you put the book in the process.
  • That’s a lot of steps, any one of which can sometimes be difficult or impossible.
  • Using electronic copies can eliminate some of these steps, or make them easier.
  • This can be game-changing.

Some ways in which electronic copies can eliminate steps:

  • You can store your entire electronic library on one device (or synced to multiple devices).
  • If you know where your device is, then you know where all of your electronic books are.
  • This can mean you don’t have to physically search for anything.
  • (Electronically searching to remember where you put something can be much easier.)
  • You also don’t have to remember to bring a specific book. You just have to remember to bring one device.
  • (Which can be a device like your laptop, phone, or iPad which you’re in the habit of carrying with you anyway).
  • If you’re already using your computer, you don’t have to get up to go get your book.
  • You also don’t have to change positions.
  • Being able to stay in the same position and location can make it much easier to start reading.
  • It can also be easier to remember your place. A lot of software will leave the book open to the same place as when you were last reading it.
  • Searching can be easier, faster, and less distracting than flipping through a print book. (This isn’t true for everyone, but it’s true for some people).
  • Electronic bookmarks may also be easier to use than physical ones.
  • You don’t have to look for highlighters, pens, pencils or notebooks, all of that is right there in the book-reading software.
  • Eliminating these steps can make reading a lot easier.
  • Making it easier can make it possible.

This isn’t the right strategy for everyone; computers, phones and other devices have their own executive dysfunction pitfalls. But for some people, it makes reading much more possible.

Short version: Some people have trouble reading print books, even if they have normal vision. Sometimes the reason for this is that executive dysfunction (or another disability) makes some of the steps involved in starting to read a print book difficult or impossible. (Eg: people with ADHD might get distracted looking for the book.) For some people, using electronic books instead of print books can make reading much more possible. Scroll up for some specific reasons that electronic books can help.

Autism Awareness starts with acknowledging that autistic people exist and matter

Real Social Skills

The strange thing about Autism Awareness is that a lot of people raising it seem to be largely unaware that autistic people exist.

They organize all these Awareness events, and then they don’t invite us. It doesn’t even seem to occur to them that it is possible to invite us. They invite professionals, our parents, and sometimes our siblings. They say they’re raising Autism Awareness, but they don’t seem to realize that autistic people exist and have opinions on autism.

They give fancy Awareness speeches, and they speak as though no autistic people are in the room. They say things like  “Let’s imagine what it must be like to have autism and be overwhelmed with sensory information.” Or “They really need therapy so they can come to do the things that you and I take for granted.” They talk about Awareness, but seem to be unaware that autistic people are present everywhere.

They don’t reference the perspectives, accomplishments, or activism of autistic people. They don’t reference the existence of the autistic self advocacy movement. They talk about Autism Awareness, but they seem to be distinctly unaware that autistic people exist and do things.

So, for April, this is the Awareness I’m raising: Autistic people exist. We do things. Our accomplishments matter, and deserve to be respected and acknowledged. We grow up, and our adulthood needs to be taken seriously. We learn, and our thoughts are important. We are people, and it’s time to stop objectifying us. We have perspectives, and our voices matter.

Meaningful echolalia

Real Social Skills

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.

Short version: Repeated phrases are often meaningful. Some people with disabilities communicate mostly in memorized phrases and references and allusions to stories and other things. Nondisabled people are taken seriously when they communicate this way. Disabled people who communicate in references should be taken just as seriously. (Even when they don’t communicate in literal language very often or at all).

Thoughts on symbol support and picture support

Real Social Skills

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

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

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

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

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

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

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

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

It’s important to keep this in mind.

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

For example:

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

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

Similarly:

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

Some considerations for symbol use:

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

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