Tag: autism

“Well, he throws chairs at people!”

Real Social Skills
Content warning: talks about abuse of people with disabilities in schools and other programs, and ways people rationalize it.
 
A reader asked:
 
Thing about “last resort”- people will often make brutal things to do look connected to things they are not connected to. “You pinned him to the floor?” “Well, he throws chairs at people!” failing to mention that the pinning to the floor was actually because he threw a pencil. Even if it is factually true that the kid sometimes throws chairs at people.
 
realsocialskills said: 
 
Yes, absolutely.
 
Another thing that can happen is that someone will be described as “he throws chairs at people!” even if he did that one time five years ago.
 
Or if another teacher *told* them that he threw chairs at people, and they don’t ask for details. And maybe what actually happened is that he picked up a chair one time, and they decided that meant he was going to throw it. Or he habitually throws chairs, but never actually at people.

Self-diagnosed people

Real Social Skills
A reader asked:
How do you feel about self-diagnosed autistics?
realsocialskills said:
I think that autistic people are autistic whether or not that they have been diagnosed.
I think people often know that they are autistic without a doctor telling them that they are. I have absolutely zero problems with someone thinking that they are autistic or wanting help. Even if it turns out that they are mistaken and not actually autistic. That happens sometimes, but I don’t think that’s hurting anyone, and I don’t think it’s a legitimate reason to object to self-diagnosis.
I think that people with disabilities need support, coping methods, and accommodations whether or not they’re diagnosed with anything.
I think we should move towards a world in which accessibility is seen as routine and normal rather than something people have to beg for access to. As it stands now, support resources for people with disabilities are often drastically limited. That is not the fault of people who identify their problems and support needs without medical diagnosis. Resources are scarce because our culture doesn’t value people with disabilities enough to make support readily available, or to routinely make accessibility and inclusion part of planning in schools, organizations, architecture, workplaces, or anywhere else. That’s the problem. Self-diagnosers who want help are not the problem.
There’s this notion that people with disabilities who need to do things differently are somehow trying to get away with something, and that they need to pass an extremely high bar to prove that they can’t help it. That attitude hurts all of us. Hating people who self-diagnose plays into that attitude, and it doesn’t help anyone.

Acceptance is the opposite of giving up

Real Social Skills

I’ve seen a disconnect between parents and self-advocates when we talk about disability acceptance:

  • Advocate: Disability acceptance is really important. Disability is part of who I am.
  • Parent: You mean I should just accept that my kid is suffering and can’t do anything and not even try to help them?!
  • Or, even worse: Yes, it is. My kid is my special little pillow angel and I love her just the way she is. It’s great having a kid who will never grow up.

By acceptance, we do not mean either of those things. What we mean is more like this:

  • Kids whose development is atypical get treated like they’re failing before they’re even old enough for kindergarten. (See all those checklists that say “by the time your child is 2, he or she should be…”, and think about what it’s like for a child’s earliest memories to involve adults thinking they were failing)
  • Being disabled isn’t a failure, and it shouldn’t be seen as one. There is no should in development, and there is no should in bodies.
  • Childhood isn’t something you can flunk
  • Magical thinking will not help, and neither will centering your life around searching for a cure
  • Children with disabilities who live to adulthood usually become adults with disabilities
  • They need to be prepared for disabled adulthood, not encouraged to think that if they work hard enough they will be normal
  • It is ok to be a disabled child, to develop atypically, and to become an adult with a disability
  • You can have a good life and be ok with your actual brain and body
  • Imagining that you will have a fundamentally different body one day makes everything harder
  • Life gets better when you accept yourself and work with your body and brain rather than against it
  • Shame is not a cure
  • Disability is not an emergency, and panicked intense early intervention will not make disability go away
  • Early education can be important, and kids with disabilities need appropriate support and care, and in many cases medical treatment
  • But their life needs to contain things other than treatment; people with disabilities need to do things besides be disabled and get therapy
  • Their life is already worth living and they don’t need to be cured to be ok
  • Don’t panic

Short version: Acceptance isn’t about denying that some aspects of disability can be awful, and it’s not about categorically rejecting medical treatment. It’s about working with yourself rather than against yourself, and pursing life now rather than waiting for a cure.

Honesty

Real Social Skills

When you’re teaching vulnerable kids social skills, it’s important to tell the truth.

They need skills for living in the world as it is, not as you would like it to be.

For instance: If you teach them to walk away from bullies, you have to tell them that sometimes bullies will follow them.

If you teach them to tell an adult, you have to teach them that sometimes the adult won’t care, or will take the bully’s side, or will tell them to stop tattling.

If you teach them to say “That hurts my feelings!”, you have to teach them that some bullies will laugh at them.

If you don’t teach kids that, when those things happen, they will think it is their fault. Or they will think that you don’t care. Either way, they’re not likely to be able to come to you for further support.

It’s much better to admit that your answers are imperfect. It’s much better to admit when you don’t know how to help. It’s much better if you can listen.

Sometimes the best thing you can say is “I’m sorry that people are being so mean to you. Do you want to talk about it?" 

“As a last resort”

Real Social Skills

Content warning: This is a graphic post about brutality towards people with disabilities. ABA and justifications for abuse are discussed. Proceed with caution.

People do a lot of brutal things to people with disabilities, including children.

Some examples: pinning them to the floor, punishing them with electric shocks, medicating them into immobility, putting them in 10-40 hours a week of repetitive behavioral therapy, taking away everything they care about and making them earn it by complying with therapy, taking away their food, and confining them in small places.

These things are now somewhat politically unpopular. We identify, as a culture, as having got past that point. We think of this kind of brutality as something that happened in the past, even though it is still common.

What this means in practice is that whenever people do brutal things to someone with a disability, it will be called the last resort. People doing the brutal things will claim that they minimize them, that there are protections in place, and that they only do them when necessary.

For example, this is an excerpt from the (as of this post) current ethical standards for BCBAs (certified ABA experts):

“4.05 Reinforcement/Punishment.

The behavior analyst recommends reinforcement rather than punishment whenever possible. If punishment procedures are necessary, the behavior analyst always includes reinforcement procedures for alternative behavior in the program.

4.06 Avoiding Harmful Reinforcers. RBT

The behavior analyst minimizes the use of items as potential reinforcers that maybe harmful to the long-term health of the client or participant (e.g., cigarettes, sugar or fat-laden food), or that may require undesirably marked deprivation procedures as motivating operations.”

In other words, the current standards of ethics for ABA practices explicitly allow punishment, harmful reinforcers, and “undesirably marked deprivation procedures”. But, they claim to “minimize” it, and only do it when they consider it necessary in some way.

This is an empty claim. Everyone who has ever used harmful reinforcers and brutal punishments has claimed that they are only used when they are necessary. Even the people who deprived children of food and made them live and study on electrified floors (graphic link, proceed with caution.) Even the electric shocks and food deprivation used by the Judge Rotenburg Center do not violate the BCBA ethical guidelines, because they claim that they are necessary and only used in extreme cases (even though they shock people for things like standing up from chairs without permission.) 

Whenever any of this is done to someone, it will be justified as “a last resort”. Even if it’s an explicit part of their plan. Even if it’s done regularly with no attempt to transition to another approach. Even if nothing else has ever been tried. Someone who is treated brutally will be assumed to have deserved it.

People call things last resorts to justify doing them. They choose to do brutal things to a vulnerable person, but they think of it as inevitable because it is “the last resort”. Calling something “the last resort” means “it’s that person’s fault I’m doing this; I could not possibly do otherwise.”

Treating someone in your care brutally and then blaming them for your choices is inexcusable. 

To those treated brutally and told it was a last resort: I’m sorry that happened to you. I’m even more sorry if it’s still happening. It’s not your fault. It’s not because of anything you did, and it’s not because there’s anything wrong with your mind. You were abused because others chose to abuse you.

Autism language politics and history

Real Social Skills

Some people emphatically prefer to be called people with autism. Others get very offended. Some people emphatically prefer to be called autistic people. Others get very offended. There are reasons for all of that.

They have to do with the history of the intellectual and developmental disability community, the autism parent community, and the specific autistic self advocacy community.

For intellectual and developmental disability:

  • Most self advocates have a very strong preference for person-first language
  • Person-first language in this concept means “I am a PERSON, and I am not going to allow you to treat me as a disability case study, nor am I going to tolerate your diagnostic overshadowing.”

Autism is a developmental disability. There is a highly visible and destructive community of parents who consider themselves to be afflicted with their child’s autism. There is an autistic self advocacy community that developed in part specifically due to the need to counteract the harm being done by autism parents. The language someone prefers will often depend on which of these facts seems most important at a given time.

Regarding developmental disability.

  • Folks who are primarily involved in the IDD self advocacy community usually prefer to be called people with autism
  • This is for the same reasons people with any sort of developmental disability usually prefer person first language
  • In that context, “person with autism” means “I am a PERSON, and you are not going to treat me like an autistic specimen.”

Regarding the destructive autism parent community:

  • This parent community pushes the agenda of parents who believe that their child’s autism is a horrible tragedy that befell their parents and family
  • They call themselves the autism community, but they consistently refuse to include or listen to autistic self advocates (especially adult self advocates). They only care about neurotypical parent perspectives (and only from parents who think autism is horrifying)
  • They promote things like intense behavioral therapy for young children, institutionalization, group homes, sheltered workshops and genetic research aimed at developing prenatal testing. They do not listen to autistic self advocates who object to these things.
  • They don’t care about the priorities of autistic self advocates. They do not do any work on issues such as self-directed adult services, enforcing the Olmstead mandate to provide services in the community rather than institutions, or research into skills for listening to people whose communication is atypical
  • These parents have an emphatic preference for person first language. They say “people with autism.”
  • What they mean by this is “Autism is NOT a part of who my child is, it’s an evil brain slug attached to their head, and I want to remove it at all costs.”

There is also an autistic self advocacy community. It developed in significant part to counteract the harm done by the autism parent community:

  • A lot of the agenda of the autistic self advocacy community is the same as the IDD community and pursued in cooperation with the IDD community
  • But there is also a lot of work that’s specifically about countering the harm that has been done by the autism parent community
  • Much of the worst harm done by the parent community comes from the cultural consensus that autism is like an evil brain slug, and that any amount of brutality is a good thing if it might mean that the slug shrinks or dies
  • For this reason, participants in the autistic self advocacy community generally have a very strong objection to person first language
  • They call themselves autistic or Autistic.
  • In this context, “autistic person” means “Autism is part of who I am. I’m ok. Stop trying to get me to hate myself. You do not need to remove autism to make me into a full person. We are already people. Stop physically and emotionally mutilating people in the name of treatment.”

Neither set of self advocates are wrong. Both positions are legitimate and important to be aware of. In order to know what someone means by their language choices, you have to consider the context.

An addition from Mel Baggs:

And there’s also an autistic self-advocacy community that is separate from the DD community and also separate from what most people call “the autistic self-advocacy community”.  That self-advocacy community is heavily affiliated with a parent community that also prefers person-first language.  In many cases, people in that community prefer “person with autism” both because of the history of their community, but also because for them being called “autistic” has always meant “you are nothing but your autism and you are nothing but a walking collection of symptoms”.  Which is a much more common experience for people in that community, because they tend to be people who were considered low-functioning for their entire lives.  AutCom — as originally constituted, not as recently-blended — is a good example of such a community, so are any communities that are largely made up of FC users.

Age-appropriate interaction with autistic people

Real Social Skills
A reader asked:
 
Hello, I am a teacher. I wanted to say thank you for your posts. I work with one student who is autistic and not quite non-verbal, but speaks very little.
 
I found myself talking to her as if she were much younger than she is because I had no way of telling if she was understanding. Your posts have helped me to understand that even though she doesn’t speak, it doesn’t mean she doesn’t understand, and even if she doesn’t, I should still treat her like the 12-year-old she is
 
On Wednesday I spoke to her to let her know that I was wrong to have spoken to her like a little kid, and that I would now be speaking to her like a twelve-year-old. She seemed pleased. I have ASD traits myself, but I’ve never been non-verbal (even when I couldn’t speak, I still signed), so I didn’t really understand that non-verbal doesn’t mean not understanding necessarily. Thank you.
 
realsocialskills said:
 
Oh wow. That is heartening to hear. It’s wonderful that you realized that it was wrong to talk to her like a young child, and that you apologized. That is such an important sign of respect for her. Thank you for taking this seriously, and thank you for telling me about this.
 
I want to add that, in addition to talking to her like a 12 year old, you probably need to develop better skills at listening to her like a 12 year old.
 
Probably most of the people you’ve known in your life who had a small expressive vocabulary or spoke only sometimes were very young children. Her speech is not like that. She is thinking much more complex things than a young child is capable of. If you’re not used to listening to nonverbal or minimally verbal folks who are not babies, you probably don’t yet know how to do so in an age-appropriate way.
 
So it’s not just the way you initiate talking to her that needs to change, it’s also the way you respond to what she says. She has a lot to say. Possibly through her words; possibly mostly through her actions; possibly mostly through body language. But, in any case, she is 12 years old, and she has a lot of 12 year old things to say.
 
You can learn how to listen to her better. It’s a matter of respect, practice, and skills you can develop.
 
For instance:
  • You can get a lot of mileage out of asking yes or no questions. (For some people, it helps to prompt with “yes or no” if it seems like answering yes/no questions isn’t a skill they have all the time) Eg: “Did you bring a lunch today – yes or no?”)
  • You can also use other kinds of two-option questions. Eg: If you know that she wants a book but she can’t tell you which book she wants, you can put your hand in the middle of the shelf and say “Up or down?” “Left or right?” “This one?”.
  • You can get even more out of asking a question with an open ended and closed response. Someone who can’t give you a meaningful answer to “What do you want to do?” may well be able to answer “Do you want to draw, or do something else?” Or “Is the answer England, or something else?”
 
You can also listen to what she says, make guesses about what she means, tell her what your guess is, and ask if you are right. For instance “You just said juice several times. I think that might be because you want to drink juice. Do you want juice, or do you mean something else?” Or “You just said “We’re all friends here!” and you sounded angry. Are you upset about something?“ Or “You just said “Separate but equal!”. Are you talking about discrimination?“
 
I’ve written about listening to atypical communication here, and here, and I wrote a more general post about how to provide respectful support to an autistic student here.
 
For some further perspective on this, I’d highly recommend reading the blog Emma’s Hope Book. It’s a blog written by the mother of a 12 year old autistic girl whose speech is unreliable (with some posts from her as well), and they have a lot of really important things to say about how to respect people whose communication is atypical. 
 
Short version: Your student has things to say, whether or not she has figured out how to say them. She is already saying some of them (in words or otherwise), whether or not you understand her communication. The more you assume that she is trying to communicate with you, and the more you assume that what she says is worthwhile, the more you will be able to understand her and teach her in age-appropriate ways. Scroll up for some examples.
 
 

Listening to folks whose speech is unusual

Real Social Skills

This happens a lot, especially for autistic folks with a particular cognitive configuration:

  • An autistic person says something in the most straightforward way they can think of
  • But it’s far from the way most people say it
  • And it doesn’t occur to other people that they’re being direct
  • It’s seen as either the autistic person not understanding something, being presumptuous, or being hilarious

For instance:

  • Alice and Nancy walk into a cafeteria, which is overflowing with different food options
  • Alice (wanting a particular kind of food and not knowing how to find it): Where’s the food?
  • Nancy: Umm, everywhere?

In this example, Nancy thought Alice was just being annoying or funny and didn’t understand what she was trying to communicate. This would have been better:

  • Alice: Where’s the food?
  • Nancy: Which food do you mean?
  • Alice: Food!
  • Nancy: Are you looking for something in particular?
  • Alice: Food!
  • Nancy: Your favorite food?
  • Alice: My favorite food! Chocolate pie! Burger?
  • Nancy: They have both of those things. We will see them when we go through the line.

Or:

  • Nathan is discussing politics with his son, Arthur
  • Nathan: What does the president do?
  • Arthur: Important stuff. Not like you do.
  • Nathan: You don’t think what I do is important?!
  • (Nathan, telling the story later, uses it as an example of how kids have no filter)
  • What Arthur actually meant was along the lines of “The president is a public figure with a lot of power, and everyone pays a lot of attention to what he says; that’s really different from how other people’s jobs work”.

This would have been better:

  • Arthur: Important stuff. Not like you do.
  • Nathan: What kind of important stuff?
  • Arthur: My fellow Americans…
  • Nathan: Important like speeches?
  • Arthur: Yes. Speeches on TV.
  • Nathan: I don’t make speeches on TV.
  • Arthur: You go to the office.
  • etc etc

Short version: When autistic people communicate things, sometimes it sounds strange or unusual in ways that are often misinterpreted. Be careful about assuming that they’re being dismissive, being cute, or joking; be careful to listen. Scroll up for some concrete examples.

People with disabilities learn and think

Real Social Skills

People with disabilities are capable of learning things on purpose, because they’re interested in what they’re learning. That’s true of people with all kinds and degrees of disability. Everyone cares about things, everyone thinks, any everyone learns.

And yet, education for people with disabilities often starts from the assumption that disabled folks have no intrinsic motivation to learn. That, before you can start to teach anything, you have to identify a reinforcer for the target behavior. And that it should be the same across subjects, and that it needn’t have any relation to what you’re trying to teach.

So, instead of starting by teaching reading, you might start by identifying an effective reinforcer, and using it to reinforce reading behavior. For example, stickers. Or giving a jellybean each time someone reads a page. Or high fives. 

In a technical sense, finding a book that someone enjoys is also, according to behaviorist theory, finding an effective reinforcer for reading behavior. But it’s not at all the same as using an unrelated reinforcer to teach reading.

Finding a book that interests a person you’re teaching to read communicates why reading is worthwhile. Using an unrelated reinforcer to get them to cooperate with reading lessons may work, but it doesn’t communicate the value of reading. In fact, it actively demonstrates that you’re assuming that they will not value reading and that it’s not worth trying to convince them that reading is worthwhile. 

The same is true of communication lessons. Identifying a reinforcer and using it to reinforce speaking behavior can get someone to cooperate with rote speech lessons, but it can’t teach them what symbolic communication is. Figuring out what someone wants to say, and giving them a reliable way to say it, can. So can making sure that you listen to communication someone already has, and making it clear that you respect them. (If you refuse to learn their language, you’re teaching them that their communication doesn’t matter. Which is the opposite of helpful.) Behaviorist approaches something accomplish that, but only as a side effect. You can teach communication better if you teach it directly, rather than as a side effect of reinforcing speaking or pointing behavior. 

People with disabilities care about things, and want to learn. The assumption that we don’t is deeply degrading.