reader questions – Page 19 – Real Social Skills

Some ways to avoid teaching children that their bodies are wrong

May 30, 2013June 21, 2021 Real Social Skills

A reader asked:

…For the not teaching disabled children that their bodies are “wrong,” what are ways to avoid that? The article described why it is bad, but what are things people can say or do when in therapy or school settings, the goal is to change or level up their abilities in some way?

I think there are several things that help.

First and foremost, you have to act as though they already have value. Part of what that means is helping them to do things they care about, and not making those things into therapy. If everything someone cares about inevitably becomes therapy, it’s hard to keep caring about things. And it undermines their ability to understand they they already have value, even without being cured. Actions speak louder than words.

For instance:

If a kid likes trains, let them do train-related things for its own sake. Don’t make everything train-related into therapy.
Don’t make everything train-related into an incentive for complying with therapy, either.
And buy them train related things without requiring them to earn them with a therapy sticker chart
Let trains be trains, sometimes. And make sure the kid can count on being able to do thing they care about.
Kids need to have interests and to pursue them.
If therapy always takes priority, that’s a problem. That sends the message that therapy, and becoming more normal, is more important than anything else.

Involve them in decisions about therapy

Parents have to make certain decisions for their minor children, especially when they are very young
But they don’t have to make all of the decisions
And even when they do have to make the decisions, they can and should listen to what their kids think
If the child understands what the therapy is for, and says they don’t think it’s worth it, consider the possibility that they are right.
And if you decide they are wrong and that you’re going to make them do it anyway, tell them why
And if a kid dislikes a particular therapist, assume there’s a good reason unless you have strong evidence otherwise. (Particularly if they don’t object to the therapy and are fine with other therapists)
And the older a kid is, the less appropriate it is to force them into therapy
Kids with disabilities need to grow up and learn to make their own decisions just like kids without disabilities do
Completely controlling their care is not conducive to their learning how to make decisions about it

Be particularly careful about surgery and painful therapy

If you’re making a kid do something painful, make damn sure you have a good reason
This goes double if the kid objects to the therapy
Because being overpowered and subjected to pain at the hands of large adults is traumatic
Sometimes it’s necessary, but it imposes a heavy price. Don’t ignore the price.
Don’t do it without a good reason
And, the older the kid is, the better the reason needs to be.
Teaching a teenager that they have no right to control what happens to their body is *really* dangerous.

Distinguish between leveling up abilities and normalization

This is hard to explain. I’m going to write more posts about it at some point

Don’t do long-term 40 hour a week therapy programs.

Kids need time to do things other than therapy
They also need space to explore and do things on their own initiative
They can’t do that if almost all of their time is spent doing therapy
And it’s ok if that means sometimes they watch the same YouTube video over and over for an hour
Or spin toys
Or sit on the floor not exercising

Make sure they know adults with disabilities

It’s hard to believe that you’re going to grow up if you never meet any adults like you
Adults with similar disabilities know things that you don’t
Even if you have similar disabilities, make sure your kids know other adults with disabilities
Kids need role models and clueful adults other than their own parents
(I’m not sure how this works for kids who aren’t likely to survive childhood. I think it’s probably still helpful, though.)

Make sure they know other kids with disabilities

Having a peer group is important
Growing up without one is really isolating
That said – don’t assume that kids will be friends just because they have similar impairments
Not all kids like each other, and that’s ok
Trying to force kids to be friends isn’t helpful

Talk about it explicitly

Kids need to know why they have therapy. And what it’s for. And what’s different about their bodies.
Kids who are disabled enough to need therapy know damn well they’re different
They don’t necessarily know that it’s not their fault, though
Or have any good language to think about it
People with disabilities are almost completely unrepresented in the media, and what little media we have is almost always dangerously inaccurate
This is confusing and disorienting, and kids look for the closest available concepts to make sense of things
For instance: Almost all kids know that bad kids get punished by being made to do things that are painful and unpleasant.
If a kid is regularly made to do things that are painful and unpleasant that other kids don’t have to do, and no one explains why, it’s really easy for them to end up thinking they’re being punished for being bad.
And they can end up thinking they’re being punished for being bad for failing to do things they’re incapable of doing
This can happen even if no one ever says this to them; but most kids with disabilities get told this more or less explicitly at some point
(Eg: by religious people who tell kids that if they prayed hard enough they’d be cured; by teachers who tell them if they just tried hard enough they could do what the other kids do)
So talk about it
Even if you’re not sure they have receptive language

When food preferences complicate social food

April 27, 2013June 21, 2021 Real Social Skills

attenua asked:

…How do you deal with stating inconsistent preferences? I do not like some foods (e.g. cheeseburgers and pizza) because their high grease/fat content makes me feel bad after eating them. I frequently have to explain that a restaurant that has those foods or other high grease/fat alternatives will not serve me anything I will eat. This can look like I am criticizing other people’s eating of those foods, which is not helped by sometimes eating those foods anyway.

I think the most helpful thing is usually to suggest something specific that would mean everyone could get to eat something that they want.

For instance, if everyone wants to go to McDonalds, and you don’t feel up to eating greasy food that day, it could work to say “How about we go to Whole Foods instead?”

Or, “How about you grab a pizza, and I’ll grab something from the supermarket and we’ll meet up in the park?”

You don’t necessarily need to say why you don’t want to eat that kind of food. It’s hard to go into detail about that without sounding judgmental, and it’s also no one’s business, and not super-relevant to the practical problem at hand.

One thing you could say if you want to give a reason is something along the lines of: “I’m kind of not feeling up to eating greasy food today. How about we go to Place That Has Greasy And Non-Greasy Food?” That wouldn’t sound like a categorical statement that you will never eat greasy food ever, and it might not sound like an objection to others wanting to do so either.

(Saying explicitly that you’re not judging anyone would probably make matters worse. “I’m not judging anyone but…” is usually the kind of thing people say to get away with saying judgmental things, similarly to “no offense but…”)

Generally speaking, people are a lot more willing to do something that will solve a problem if they don’t have to come up with the actual solution themselves.

Name changes for private reasons

April 19, 2013June 21, 2021 Real Social Skills

lunethefool asked realsocialskills:

…TW for CSA, abuse: I was sexually abused by my mother for years when I was a kid. She named me after her illicit lover, and I kind of hate that sometimes because that’s how she treated me too. I want to change my name, at least socially if not legally, but I don’t know how to explain the change. I’m not comfortable telling everyone the truth.

First and foremost, you don’t owe people an explanation, and you don’t have to offer one. Some people will want to ask invasive questions, but you don’t have to answer.

In my experience (as someone who’s been through a couple of name changes), people are usually much more curious about your new name than they are about your reasons for changing it. For that reason, I would suggest that you consider picking a new name that is *not* symbolically related to the abuse you experienced, or to anything else painful. I find it much more comfortable to deal with discussing my name now that I’ve changed it to something easily explained without reference to any of my painful reasons for changing it.

Also, if you coin a new word to name yourself, it will sound ethnic to people who treat folks outside their group as self-narrating zoo exhibits, and they will ask you invasive questions about your background. You might decide that’s ok with you, but it’s something to be aware of. I wasn’t really prepared for how draining that was when I had that kind of name.

If you choose a name that sounds like a hippie name, people will ask you if you had hippie parents. If you’re changing your name because of parental abuse, this might be worth avoiding.

A friend of mine once suggested this script for a man who wanted to change his name legally:

Why do you want to change your name?
“For spiritual reasons.”
What are they?
“I can’t really tell you much about that.”

This worked well for him in court. It might also work well interpersonally. I’m not sure. What works for me is to have a very short explanation, and not offer further details.

Some possibilities:

I go by x now.
I actually go by x now.
I’m changing my name to x in honor of my grandfather.
I’ve decided to go by my middle name.
I’m using my religious name now (actual religious names have specific words used to refer to them, but I don’t know what they’re called for very many religions).
I wanted to reconnect with my heritage, so I’m going by x now.

If you want people to stay out of it, don’t give them a way into it. It’s probably better not to tell them that you have painful history with your original name, because some people will take that as an invitation to evaluate your decision. The only way to win that game is not to play. You don’t have to discuss it with anyone. I don’t discuss my names with very many people. Push come to shove, all they really need to know is what name you prefer to be called by.

Dealing with authority figures who make you really anxious or uncomfortable

April 18, 2013June 21, 2021 Real Social Skills

kazahayakudo asked:

…Do you have any advice for dealing with authority figures who make you really anxious or uncomfortable? My math professor yells really loudly and is really angry almost every class, and it startles and upsets me into not being able to listen to his lecture because I feel scared, but I’m not in a position to ask him to lower his voice. Should I email one of his superiors? I am not sure what to do.

I haven’t found a way to complain to superiors that helps; when I’ve tried it’s usually made things worse. This is not to say that it can’t be done – but I don’t know how, so I can’t tell you how.

The only thing I’ve found that works well is to avoid authority figures who act like that. When I’ve been in school I’ve, as much as possible, selected classes largely on the basis of who was teaching them. I make this a priority because I know that I can learn better from people who treat me well.

I understand that this is not always possible (although, keeping in mind that it’s ok to make it a priority makes it more possible than it might seem if you haven’t approached it that way before).

When it’s not possible to avoid bad authority figures, what I do is avoid interacting with the problematic person as much as possible. In particular, I avoid depending on them. If I need help, I ask someone else. If I can’t understand their lecture, I try to learn out of the book. (Likewise at work. If I have a boss who treats me poorly and obstructs my work, I try to avoid relying on them to get things done.)

That sometimes works. Not always.

One suggestion for your particular situation – might earplugs or headphones be an option to reduce the intrusiveness of his loud voice?

Creating personal space by moving away

April 17, 2013June 21, 2021 Real Social Skills

orima-kazooie asked realsocialskills:

…Perhaps it’s not the most subtle or polite but jerking or yanking your arm away or like just kind of jumping a little immediately as if it were reflexive can generally get the message across without upsetting people.

That’s interesting. I’m not sure how I’d do that, because I’m not sure what reads as a reflex to most people. But it sounds like a really good idea.

Another kind of reply

April 6, 2013June 21, 2021 Real Social Skills

lawlandauror asked realsocialskills:

.There is a sorority at my college who’s charity is Autism Speaks. All their promotional material and events are making me really uncomfortable. I’m not autistic but I am nueroatypical. I don’t want to talk over autistic people, but I also don’t want to stay silent. What can I do in this situation?

A few things I’d say, in addition to signing the pledge and urging others to do so:

I think what you need to bear in mind is that you’re not speaking for autistic people, you’re saying why Autism Awareness is bad. You don’t need to be autistic to understand that. So long as you’re not claiming to speak for others, I think you’re probably ok.

(For instance, don’t say “autistic people don’t like autism speaks!”, say something like “autism speaks doesn’t have any autistic people in positions of leadership and that’s a problem”).

Also, don’t expect any kind of emotional reaction from autistic folks as a result of what you say. Don’t expect autistic people to be grateful, or to be moved that someone is saying something. Sometimes that might happen. But it shouldn’t be the reason you’re speaking up, and it shouldn’t be something you expect. If you’re putting additional emotional pressure on autistic folks, you’re doing it wrong.

And also, Awareness paints a pretty broad brush. Autistic people get the most direct hate this month, but it’s also when people promote a model of neurological disability that’s dangerous for everyone. Feeling personally threatened by that is not appropriative or silencing. If that’s part of what’s going on for you, it’s ok to say so.

Something non-autistic folks can do to combat the Autism Awareness mentality

April 4, 2013June 21, 2021 Real Social Skills

lawlandauror asked realsocialskills:

.There is a sorority at my college who’s charity is Autism Speaks. All their promotional material and events are making me really uncomfortable. I’m not autistic but I am nueroatypical. I don’t want to talk over autistic people, but I also don’t want to stay silent. What can I do in this situation?

You can sign this pledge, and urge others to do so (https://www.autismacceptancemonth.com/pledge/):

I pledge to only attend, speak at or otherwise participate in autism panels, conferences and events that meaningfully involve Autistic people. I choose not to give my business or my time to settings that fail to include Autistic voices in conversations about autism.

When you realize that it’s wrong…

January 23, 2013June 21, 2021 Real Social Skills

A reader asked:

I’m asking you because you are a good person. My brother has dyslexia and all his life he was bullied to think he was worthless, a mistake of our mother. I admit I have my parcel of blame in this, but I too was raised to think of him of a lesser being by our grandmother. These days he’s being bullied by his teachers, expecting him to get higher grades, again, like mine. He asked me the other day what he would do with his life, because he really thinks he is unskilled and is a big waste of time and space. He asked me what he is good with, because from his eyes, he can’t do anything right.

I honestly don’t know what to say to him and I know this is pretty much because I was born resembling my grandmother with my father’s memory while he resembles mother in almost everything, whom grandmother hated until she died.

I don’t know what to do, please help us.

I don’t know your brother and I don’t know what he’s good at, so I can’t address that directly, but, here’s what I can suggest:

Talk to him about the abuse

Tell him that what you and your grandmother did to him was wrong
Tell him that what his teachers are doing is wrong and disgusting
Tell him that he shouldn’t be treated like that and that it isn’t his fault
It’s not because of his grades, or anything about him. It’s because of prejudice and hate

Be honest about your part in it, and do what you can to treat him right from now on

Tell him that you’re sorry for your part in it, but don’t make it about you trying to feel better or get him to reassure you
Be specific about things you’ve done to him that you think were wrong
Don’t do those things
When he points out that you’re still doing those things, apologize and stop
Don’t expect him to trust you just because you’ve realized it was wrong – you have to stop doing it, over a long period of time, before it’s likely that you will seem safe
Listen if he wants to talk, but don’t push the issue

And here are some things I’d say to him directly, if I was talking to him rather than you:

It’s ok not to know what you want to do or are good at:

Doing stuff is awesome, and life gets better when you find good stuff to do
Everyone has worthwhile things they can do
It takes time and work and exploration to figure out what they are and get good at them
School isn’t conducive to this kind of growth for everyone
School is actively harmful to some people.
Having school and an unsupportive family undermine your ability to find things to do is really, really common for people with learning disabilities
It isn’t your fault that this happened to you, and struggling in that environment doesn’t suggest anything bad about you
You don’t have to be a super accomplished superhero to have worth as a person. Don’t hold yourself to that standard.

Spending more time on things you like helps:

People who struggle with school are often taught that anything they like is a waste of time, and that they should stop doing it and spend more time banging their head against impossible or barely-possible assignments
That’s really bad advice; you can’t develop your interests and abilities by renouncing everything you like
Finding stuff you like and are good at is more important than faking normal at school.
If you like video games, play them
If you like TV shows, watch them
If you like cooking, cook things
If you like talking to people online, find people to talk to
Etc etc. These are just some examples of things some people like, not necessarily things you do or should like. Do things that *you* like.
Doing things you like is important. Even if they’re activities other people don’t value very much. You have to explore to find out what you like and can do well. And you need space to do that in. So, take some space.

Acknowledging limitations creates abilities

People with disabilities are often taught that if we don’t acknowledge limitations, we won’t have any
And then we are forced to spend lots and lots of time and effort pretending that this is true
We spend so much time pretending that we can do things and forcing ourselves to do things that are barely possible, that we don’t have much available for anything else
If we acknowledge limitations and stop doing that, then all that time and energy becomes available for doing other things
And then we can actually start doing things well and succeed at things
Acknowledging and understanding disability is one of the most important life skills anyone with a disability can develop.

Connect with other people with similar issues:

Special ed teachers and other alleged experts often don’t know what they’re talking about
They will often advise you to do actively harmful things
Peer support from other people with related disabilities helps, because they often know what they’re talking about and have strategies for dealing with it.
In any case, judge for yourself and do what you think will help you. No one else gets to tell you what your coping strategies have to be.

Autism awareness for aides

January 2, 2013June 21, 2021 Real Social Skills

flannelfrog asked:

I recently got a job offer to be an in-school aid for a gradeschooler I know with aspergers and I’m genuinely afraid to take it because, while I have teaching experience, I’ve never been an aid before. I’m afraid I’ll do something wrong and mess the kid up for the rest of his life. Do you have any advice for me?

Several piece of advice:

First, shift the way you’re thinking about this.

The problem before you is how to do right by a kid in your care. Thinking in terms of wanting to avoid doing something wrong and messing the kid up for the rest of his life is going to make it harder for you to do right by him.

You’re going to do things wrong (you’ve done things wrong in every teaching job you’ve had, it comes with the territory); and it’s going to be important for you to acknowledge and fix your mistakes. Making possible mistakes, even serious ones, a referendum on whether you are a good person, makes it a lot harder to do right by others. I’ve written about that before, here.

Treat him as a person

Almost universally, autistic people are treated as though they aren’t quite real, especially by caregivers
Often, they think of this as looking past the autism to see the real person
But the autism is part of who he is.
Don’t attribute some things to him, and others to the autism. He is real all the time.
He is a real person. Already.
Your job is not to cure him. Your job is to support him and help him to develop his abilities. Learning to do more things will not make him any less autistic, nor should it.

Do not try to make him indistinguishable from his peers

Because, seriously, what kind of a goal is that?
He’s worthwhile as a person, and he’s different from most other people, and it’s ok.
He has better things to do with his time than fake normal.
Being able to do awesome things is way better than being able to look normal while doing pointless things
It’s ok to be different.
Don’t pretend that he’s really just like everyone else, or that he will be when he grows up.
One of the most important things you can teach an autistic child is that it is ok to be autistic

Forget everything you think you know about the difference between autism and Asperger’s syndrome:

People whose diagnosis is Aspergers syndrome are autistic
Autistic people who can speak are disabled
There isn’t actually any fundamental difference
Except that people considered autistic are often seen as incapable, and people considered to have Aspergers are often seen as faking their difficulties
Assume disability and ability, and that you will have to figure out how that works for the person you’re working with

Learn how he communicates.

All autistic people have some sort of atypical communication
Some autistic people are really good at hiding it, and looking normal at the expense of understanding what is going on.
Autistic children, particularly boys, often pretend to be acting out in order to mask disability. Be mindful of this possibility.
A good percentage of the time, when autistic people repeat things over and over, they are trying to communicate something and aren’t being understood. Be aware of this, and learn how to make communication possible in this situation.
If he seems not to understand something, do not get angry and assume he’s just being defiant or lazy
Some things are really really hard to understand, even though they seem simple to people with typical development
For instance, an autistic child who has been isolated might find fiction other kids their age understand completely incomprehensible because they can’t relate to the experiences and relationships it describes

If he makes repetitive motions, assume they are important:

A lot of autistic people rely heavily on motion to think well
Or to communicate
Or to understand things
Or to find words
Or to regulate themselves.
If you prevent an autistic person from making repetitive motions, you’re probably also preventing them from doing things like understanding what’s going on, communicating, and learning self-control and interaction.
Do not value a typical affect over learning and communication.
Do not say “quiet hands” for any reason ever. (Unless you’re saying something like “people shouldn’t tell you ‘quiet hands’”)

Do not make him follow rules the other kids are allowed to get away with breaking

Because that’s unfair, and humiliating
And it also prevents peer relations
It also prevents him from learning how rules actually work, which is a vitally important skill, especially for people who are likely to spend large parts of their life subject to arbitrary decisions made by people with too much power over them

Do not confuse him about consent, and help him learn what consent is

If something is an order, do not phrase it as a request. Doing so teaches people to be incapable of saying no.
Ask a lot of questions that actually are requests, and go with what he says, even if it’s not the answer you wanted.
If he always says yes when you ask him things, assume this is because he has been taught to be incapable of saying no
Ask questions in ways that remind him that saying no is possible
Or questions in ways that don’t seem to create a compliant option and a defiant option at all.
For instance “do you want to stay inside today, or would you rather play on the swings?”
But questions that are real. Not forced choices in which each option is basically compliance.

Support him in navigating the difficult and often hateful world he lives in

Do not make him play with kids he dislikes, even if this means he doesn’t play with anyone
There are worse things than being alone. Being surrounded by people who everyone insists are nice and your friends, but who actually don’t think you’re real or treat you well is much worse than honest loneliness.
It’s possible, and likely, that there are very few kids, or even no kids at all, in his group who it is a good idea for him to spend time with
And even if you think he’s wrong about this, it’s a decision he should be making for himself (and his judgement is probably better than yours)

When kids or adults do bad things to him (and they will), you usually won’t be able to make them stop. You should tell him that what they’re doing is wrong, and that it’s not his fault.
Knowing that it’s wrong, and that others know it’s wrong, helps a lot.

Some things you should read:

Ballastexistenz From the beginning. Every post. It has a lot of fundamentally important things about power, and dehumanization, and about seeing people as real. This blog has a lot of the best things that have ever been written on this topic.
Rolling Around In My Head is also a really good blog, written by a disabled man whose professional work is supporting people with disabilities. He says a lot of things worth knowing. Also his book Power Tools is important for understanding how this power dynamic works – and your environment and training will put pressure on you not to understand it.
Loud Hands: Autistic People Speaking is a really important book about autism and the world written by insightful autistic people. Buy it and read it and understand it, and it will help you to do right by this boy and others