Tag: actuallydd

Document communication

Real Social Skills

This post may not apply to all of you, but I know a lot of you work with people whose communication is impaired, so:

I’ve come to believe that if others are reporting that someone has no communication, it is important for others responsible for their care to do everything in their power to counteract this.

Being perceived as noncommunicating is dangerous. It can prevent someone from ever being listened to. It can also lead ableists to withhold medically necessary care because they believe that person’s life is not worth living. 

You can’t reliably assess someone’s receptive communication unless they have expressive communication that you can understand (and even then, it’s difficult). Being unable to respond is not the same as having no understanding, and it’s wrong to assume that people don’t understand. So, really, no living person should ever be described as having no communication. That may not be in your power to fix, but keeping it in mind will help you to treat people better.

Beyond that, most people who are described as having no expressive communication actually do. Don’t be led astray by someone else saying that someone is “noncommunicative” or “nonverbal”. Unless the person they’re talking about is in a coma, they’re probably wrong. If you look for communication, you will be able to listen to them better, and also better able to protect them by documenting their communication. So look for it, and document it, and tell other people who care for them. Their life may depend on it, and the way they’re treated almost certainly does.

Some specific things you can look for:

  • Do they turn their head when you come in?
  • Flap their hands when they’re angry or happy?
  • Vocalize?
  • Say words that may or may not be communicative? 
  • Try to get out of their chair?
  • Sing?
  • Become more calm or agitated when you speak to them?
  • Make eye contact?
  • Say numbers?
  • (There are any number of other things)

Everyone with voluntary control over any part of their body communicates. If you’re working with someone, learn their communication and do what you can to make it known that their communication exists and matters.

Liking things is never age-inappropriate

Real Social Skills

People get to like things. It’s ok to like whatever you like.

Even if it’s a show for little kids

Or toys. Or kids’ art supplies. Or picture books. Or YA novels.

When people like things, they’re being people who like things, not being age-inappropriate.

It’s wrong to invade spaces that are intended for young children, or to attempt to get children to accept you as a peer. That’s a boundary violation. Age matters when you’re interacting with others, and some things are genuinely wrong for adults to do.

But liking the thing is never the problem. It’s always ok to like things. Adulthood happens when you reach the age of adulthood. It is not something you have to earn by turning away from awesome things you like.

Nice Lady Therapists

Real Social Skills

Content warning: this post is about physical and emotional harm done to people (especially children) with disabilities by (mostly) female therapists. Proceed with caution.

This is a hard post to write. It’s about abuse. It’s about a kind of abuse I haven’t seen described much. I think abuse is the right word, even though a lot of abusers probably genuinely think they’re doing the right thing.

Anyway, here goes:

Many, many people with disabilities I know have been harmed or even outright abused by Nice Lady Therapists. (Usual caveat: not all therapists are abusive, and this post is not opposition to childhood therapy. I’m saying that therapists need to stop hurting kids and other vulnerable people, not that therapy is evil. Pointing out that therapy is often important and that many therapists are good is not an answer to what I am describing.)

Nice Lady Therapists tell us that, whatever they do to us is by definition nice, and good for us. And that we like it, and that they love us, and that they are rescuing us, and that we are grateful.

They have a brightly-decorated therapy room full of toys, and assure every adult they come across that ~their kids~ love therapy. They use a lot of praise and enthusiastic affect, and maybe positive reinforcement with stickers and prizes. They might call the things they have kids do games. Some of them really do play games.

And every interaction with them is degrading in a way that’s hard to pinpoint, and hard to recover from. They do all kinds of things to kids with disabilities that typically developing kids would never be expected to tolerate. And they do it with a smile, and expect the kids they’re doing it to to smile back.

Sometimes it hurts physically, sometimes it hurts emotionally. Sometimes it’s a matter of being 12 years old and expected to trace a picture for toddlers for the zillionth time. And being told “This is fun! I used to do this all the time when I was a kid!”.

Sometimes it’s a matter of being forced to do a frightening or physically painful exercise, and being forbidden to express pain or fear. It hurts their feelings if a kid is upset. Don’t we know how much she cares? Don’t we know that she’d never do anything to hurt us? Don’t we want to learn and grow up to be independent?

Sometimes it’s a matter of being expected to accept intensely bad advice as though it’s insight. For instance, getting sent to therapy because you’re not making friends. And being told “We are all friends in this school! You have to give the other kids a chance.” And, if you try to explain otherwise, she patiently and lovingly explains to you why your thinking is distorted and you’ll have lots of friends if you just let yourself try.

Sometimes it’s – crossing a physical line. Touching in a way they have no good reason to be touching. Or touching over the objections of the kid in a way that is in no way justified by therapy goals. Sometimes sexually, sometimes not. Sometimes in ways that are against ethical standards of practice, sometimes not. But intimately, invasively. And if you say no, she patiently, lovingly, explains that you have nothing to be afraid of and that everything is ok. And that if you just trust her, you will have fun and get better. And when her profession has professional training about boundaries and appropriate touch, she thinks or even says “women don’t do that.”

Some male therapists do many of these things too, but there’s a gendered version of it that usually comes from women. And that can cause a problem for people with disabilities who are recovering from this. Most things about trauma and abuse of power are about misogyny in some way. They’re about men hurting women, and taking advantage of power dynamics that favor men to do so. Those descriptions are important because that pattern is common. But it is not the only abuse pattern, and it is not the only gendered abuse pattern.

Female therapists are subjected to misogyny and the power of men just as much as any other women. But they also have tremendous power over people with disabilities, many of whom are deeply dehumanized. The assumption that women have neither the power nor the ability to hurt anyone gets really dangerous really quickly for children with disabilities receiving therapy.

And it also means that people with disabilities often have a different relationship to gender than most nondisabled people. If you’ve been harmed by women over and over and assured that you liked it, it complicates things. If you’re a girl, it can make it hard to see a group of women as a Safe Space, especially if they think the thing making it safe is keeping the men out. If you’re a boy who has been repeatedly harmed by women who believed they were powerless, it can be hard to understand that the gender hierarchies that feminists and others talk about actually do exist. And it complicates things in any number of other ways.

But if you have been hurt by Nice Lady Therapists, you are not alone. If it has affected your relationship to gender, you are not alone. If it has left scars that others say you shouldn’t have because she was nice and meant well, you are not alone.

You don’t have to think someone is nice because she says she is. It’s ok to think that someone is hurting you even if that upsets them. You don’t have to think someone is safe or loving just because they are a woman or a therapist or smiling. Women can be abusive too. In human services, it is common. You are not alone, and it was wrong to treat you that way. The harm done to you was not because of your disability, and it’s not something that you could have fixed by being more cooperative or working harder or having a better attitude.  It’s not your fault, and it’s not because of anything wrong with you. And it’s not your fault if it still hurts.

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.

Listening to people who have disability accents

Real Social Skills

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

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

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

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

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

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

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

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

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.

Nonviolent Communication can hurt people

Real Social Skills

People who struggle interpersonally, who seem unhappy, or who get into a lot of conflicts are often advised to adopt the approach of Nonviolent Communication. 

This is often not a good idea. Nonviolent Communication is an approach based on refraining from seeming to judge others, and instead expressing everything in terms of your own feelings. For instance, instead of “Don’t be such an inconsiderate jerk about leaving your clothes around”, you’d say “When you leave your clothing around, I feel disrespected.”. That approach is useful in situations in which people basically want to treat each other well but have trouble doing so because they don’t understand one another’s needs and feelings. In every other type of situation, the ideology and methodology of Nonviolent Communication can make things much worse.

Nonviolent Communication can be particularly harmful to marginalized people or abuse survivors. It can also teach powerful people to abuse their power more than they had previously, and to feel good about doing so. Non-Violent Communication has strategies that can be helpful in some situations, but it also teaches a lot of anti-skills that can undermine the ability to survive and fight injustice and abuse.

For marginalized or abused people, being judgmental is a necessary survival skill. Sometimes it’s not enough to say “when you call me slurs, I feel humiliated” – particularly if the other person doesn’t care about hurting you or actually wants to hurt you. Sometimes you have to say “The word you called me is a slur. It’s not ok to call me slurs. Stop.” Or “If you call me that again, I’m leaving.” Sometimes you have to say to yourself “I’m ok, they’re mean.” All of those things are judgments, and it’s important to be judgmental in those ways.

You can’t protect yourself from people who mean you harm without judging them. Nonviolent Communication works when people are hurting each other by accident; it only works when everyone means well. It doesn’t have responses that work when people are hurting others on purpose or without caring about damage they do. Which, if you’re marginalized or abused, happens several times a day. NVC does not have a framework for acknowledging this or responding to it.

In order to protect yourself from people who mean you harm, you have to see yourself as having the right to judge that someone is hurting you. You also have to be able to unilaterally set boundaries, even when your boundaries are upsetting to other people. Nonviolent Communication culture can teach you that whenever others are upset with you, you’re doing something wrong and should change what you do in order to meet the needs of others better. That’s a major anti-skill. People need to be able to decide things for themselves even when others are upset.

Further, NVC places a dangerous degree of emphasis on using a very specific kind of language and tone. NVC culture often judges people less on the content of what they’re saying than how they are saying it. Abusers and cluelessly powerful people are usually much better at using NVC language than people who are actively being hurt. When you’re just messing with someone’s head or protecting your own right to mess with their head, it’s easy to phrase things correctly. When someone is abusing you and you’re trying to explain what’s wrong, and you’re actively terrified, it’s much, much harder to phrase things in I-statements that take an acceptable tone.

Further, there is *always* a way to take issue with the way someone phrased something. It’s really easy to make something that’s really about shutting someone up look like a concern about the way they’re using language, or advice on how to communicate better. Every group I’ve seen that valued this type of language highly ended up nitpicking the language of the least popular person in the group as a way of shutting them up.

Short version: Be careful with Nonviolent Communication. I-statements have their uses in some contexts, but NVC is not the complete solution to conflict or communication that it presents itself as. NVC can be particularly dangerous for people with communication disabilities, and for people who have trouble setting boundaries.

When parents ask invasive questions

Real Social Skills
A reader asked:
 
Hi. My parents are always asking me why I do things like rock back and forth or become unable to talk. When I say “I don’t know” they press me until I throw wordsoup at them. If I answer “I was overloaded” or whatever “Why were you overloaded?” “The lights.” “Why did the lights bug you today and not yesterday?” “I didn’t sleep well.” “Why didn’t you sleep well?” They go farther and farther until I say I don’t know, then press me until I make up reasons. I hate it. Help?
 
realsocialskills said:
 
That’s hard. There are no universal strategies that work for everyone in this case, and you might not be able to get them to stop, particularly if you are still living with them. That said, here are some possibilities:
 
Depending on your relationship with them, it might help to talk to them about it when you’re all calm. If they care about how you feel, it might help to tell them that it’s hurting you, possibly along the lines of:
  • Mom, when I am rocking back and forth or unable to speak, the last thing I want to do is talk about it. It really hurts my feelings when you press me for answers. There’s always a reason, but I don’t always know it, and it’s not something I want to talk about when I’m in that state of mind. When I’m rocking or unable to speak, I’d prefer that you leave me be.
  • or:
  • Dad, I get the sense that when I rock or can’t speak, it makes you very worried and you want to find out exactly what’s going on. I know you mean well, but that doesn’t help. Rocking and losing speech sometimes is actually fairly normal for autistic people, and it hurts my feelings when you act like it’s a problem to be solved. When I rock or can’t talk, that’s ok, and I’d prefer that you let me be and stop trying to investigate.
  • This only works if your parents care about your feelings and are likely to believe you. I don’t know you or your family, so I can’t tell you whether or not you have that kind of relationship.

Also depending on your relationship with them, you might be able to unilaterally refuse to talk about these things. This depends on how much power you have and how they are likely to react, but it’s a possibility worth considering:

  • If you refuse explicitly and say “I do not want to talk about that”, they will probably get angry
  • But it’s hard for them to argue with, particularly if you adopt a broken record approach and don’t answer questions like “why not?”, or answer them in closed ways like “That’s private.”
  • Whether this is a good idea depends on what your parents are likely to do if they get angry, and whether you consider that consequence bearable.
  • If all they’re likely to do is get angry or yell at you, it’s probably in your interest to develop a tolerance for yelling and anger
  • This is a good post by Dave Hingsburger about a man with a developmental disability learning to tolerate parental anger

Another possible broken-record approach:

  • When they’re asking, it might help to say “because I’m autistic”, and “because that’s what autistic people do” in response to all of their questions
  • Or something lighter like shrugging and saying “My brain works in mysterious ways”, if you can pull off a light tone with that.
  • This might work better than outright refusing or saying “I don’t know”, since it’s an answer, but it doesn’t get into details

Another possibility: infodump and bore them:

  • If they want to ask you about rocking or losing speech, you might try telling them every single thing you can think of about rocking and losing speech, in as verbose a manner as you can manage
  • And answer every followup question with another longwinded monologue
  • Infodumping can be a superpower of self defense. As Laura Hershey put it about wheelchair users blocking inaccessible doors, such power should not be wasted
  • If you’re infodumping and answering the question you want to answer rather than the one they want you to answer, that gives you power

Another possibility: lie

  • It might help to make up something that sounds plausible and just answer that every time they ask
  • Lying can be easier than trying to tell the truth
  • Particularly if you practice the lie and refine it to become an answer they find satisfying
  • “Why were you rocking?” “Because I was overloaded.” “Why?” “Because of the lights.” “Why did the lights bother you today and not yesterday?” “Today the lights were different. I think the bulbs are burning out.”
  • It is ok to lie when people are harassing you about things that are none of their business, even if they love you, even if they are your parents

Another possibility: Aggressively change the subject when they ask questions you don’t want to answer;

  • This is particularly effective if they have things they are particularly interested in
  • Eg “Why were you rocking?” “So, are you looking forward to the big game tonight?”
  • This doesn’t work on everyone, but it can be very effective with some people

Another possibility: Talk about the things they’re objecting to in positive terms:

  • “Why were you rocking?” “Because rocking is awesome!”
  • “Why weren’t you talking?” “Because words are overrated and the space outside of words is beautiful”
  • This can be disarming, in part because it’s rude to argue with people about things they like
  • They might follow up with: “But other people think it looks weird”, which you can answer “That’s their problem.” or “That’s ok.”
  • They might also say “That’s inappropriate”. I don’t know a great rhetorical response to that one, but people who say that are in fact wrong.

Another possibility: Turn the questions back on them:

  • “Why were you rocking?” “Why do you ask?”
  • This can be surprisingly effective with a lot of people, particularly if you can manage to sound curious or therapeutic.
  • Having a snarky/offended tone isn’t quite as effective, but it can sometimes work too, because it implies “that was not an appropriate question”. That tone will get some people to back off; it will cause others to argue

These are some of the strategies I know. Captain Awkward also talks about parents and boundaries a lot. You might want to take a look through her archives. (That said, take her advice about therapy with a grain of salt. What she says is true for a lot of people, but it isn’t necessarily going to be good advice for people with disabilities, particularly teenagers).

Beyond that, in any case, I think it’s important to keep in mind that this isn’t your fault, and that your parents should not be doing this. They may not intend any harm, they may well think they’re helping you, but they’re being mean. The problem is not caused by autism. The problem is caused by them being wrong about how to treat you.

These three posts about dealing with people being mean to you might help: “You’re ok, they’re mean.”, Learning self respect, and When people you love are mean.

I’m sorry you’re dealing with this. It’s an awful situation to be in. I hope that some of this helped.