actuallyautistic – Page 4 – Real Social Skills

“Well, he throws chairs at people!”

September 17, 2014June 21, 2021 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.

Setting the stage for disclosure of awkward or stigmatized things

September 4, 2014June 21, 2021 Real Social Skills

A reader asked:

I’m on disability for mental illness and I recently moved to a new place. (I moved because the area I lived was rather toxic for me and I have a best friend here who is great support.) This means I’m meeting a lot of new people, and a lot of them open conversations by asking about work or why I moved here. I can only get by with “non-answers” for so long, and sometimes there are people who I would like to tell more to but not yet. I don’t know how to handle these questions. Suggestions/ideas?

realsocialskills said:

I don’t know much about the specific situation you’re in, but I do know some things about setting the stage for disclosure of awkward or stigmatized things:

First of all, it’s easier to disclose later if you don’t lie now. (There are reasons that lying might still be a good idea sometimes, but it has the downside of making later disclosure more difficult.) If you’ve already told a lie, then if you want to tell the truth you also have to effectively disclose that you lied about it, which can be awkward. (This isn’t necessarily always a huge deal. Some people will absolutely understand why you lied. But it does make things a bit harder).

Second, there are intermediate areas between telling the whole truth and giving a complete non-answer. You might be better off erring on the side of giving partial answers. Partial answers send the message that, yeah, there’s probably a story there, and now isn’t the time, but maybe you’ll get there eventually.

Partial answers can be things like:

“I was dealing with some medical issues and moved to be closer to supportive friends.” (I don’t know if that line works well for mental health – I feel like it should, but I don’t actually *know*, and I hope that people who’ve dealt with disclosing that degree of psych disability will weigh in)
“Things were really hard where I was living before.”
“I’m out of work right now.”/“I’m not able to work right now.”
“I’m between things.”
“It’s a long story.”

Partial answers work best when you combine them with an immediate subject change. The most effective way to change the subject is by asking them an open-ended question about something they are likely to want to talk about:

Them: Why did you move here?
You: Things were really hard where I was before and I wanted a change.
You: Do you know any good bookstores here? I’m always excited to learn where the new ones are in a new place.

Some kinds of questions that work well for changing the subject:

Asking them about themself:

Most people like to talk about themselves
If you get people to talk about themselves and listen to them, they will usually enjoy it and not mind that you haven’t told them much about yourself yet
It also can be a way for you to find out more about them and get a better sense of what it might be safe or comfortable to tell them
This works best if you ask them something specific but open-ended, eg questions like “How long have you lived here?” “What do you do?” work better than “Can you tell me about yourself?”
If they ask you a question, it’s often particularly effective to ask them the same question after you give a partial answer. People generally ask questions in getting-to-know-you contexts that they are eager to answer themselves.

Asking them about the place you’ve just moved to:

Most people like to feel competent and like they have expert knowledge
So they generally like to explain things they know well to people who are eager to find out about them
Asking about the area and listening to their answers is likely to make them feel happy and competent
Which can lead to them feeling positive about the conversation and happy that they met you
And, again, it’s a way to find out more about them and how they think

Pay attention to what people tell you:

If you notice other people who seem nice and also give non-or-partial answers to common smalltalk questions, they might be good people to get to know a bit better
(Not that it’s guaranteed; sometimes people are evasive because they’re hiding something that is actually bad. And even if they’re hiding something that isn’t bad, that doesn’t necessarily mean you and they will be good friends. But it *is* a sign that they might get it.)
If people say awful things about psychiatric disability, exercise caution about trusting them. It’s likely that they mean it, even if they are otherwise nice.
Listen for people who share your interests, even a little, and talk to them. Connecting around interests bridges a lot of gaps.

Ask your friend for help:

If your best friend has been in the area for a while, they might have a sense of who they trust to treat you well if you disclose things to them
Especially if they can introduce you to nice people
It’s a lot less stressful to deal with this situation if you can identify some people who are likely to be nice to you once you’re ready to tell them things

All of that said: you may actually be better off just being open about things in a matter-of-fact way. That has a lot of downsides, but it also has a considerable upside:

If you are open about something stigmatized, then you find out fairly quickly who is going to be a jerk about it and who isn’t
This means that you get a lot more people being directly awful to you, but it can be a more bearable kind of awful
Because if people you don’t particularly care about say horrible things to you, it can only penetrate so far.
It hurts a lot more if it’s someone you’ve really been trying to build a friendship with for a long time.
It is in many ways far less stressful knowing how people are going to react than worrying about how people are going to react
And it also makes it *far* easier to identify people who get it and won’t be jerks
In particular, if you are open about things, then people who *aren’t* open about things will be able to identify you as a trustworthy person, which means you’ll be able to find each other.
Also, people often take cues from how you talk about a stigmatized aspect of yourself
If you can talk about something stigmatized in a matter-of-fact way (possibly combined with an immediate subject change), people tend to react better than if you talk about in in a more cringing way
This approach has a major downside too, but it’s worth considering

Short version: There are a lot of approaches to disclosing stigmatized things about yourself. You might be better off being really open about it. You might be better off disclosing more cautiously. It helps to give partial answers to questions people ask, and to change the subject. It also helps to ask people questions that they’ll want to answer, and to listen carefully to what they say.

Self-diagnosed people

August 16, 2014June 21, 2021 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

August 12, 2014June 21, 2021 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.

Liking things is never age-inappropriate

August 8, 2014June 11, 2021 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.

Honesty

August 5, 2014June 11, 2021 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”

August 2, 2014June 11, 2021 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

July 24, 2014June 21, 2021 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

July 21, 2014June 11, 2021 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.