questions for y’all – Real Social Skills

Resources other than ABA?

August 15, 2015June 21, 2021 Real Social Skills

Anonymous said:hello! I am a mom of a nine year old boy. I can tell he does not like ABA at all. I have taught him so much at home, and I am a first time and single mom. Schools only teach using ABA. My son does not like it one bit and is very behavioral.

I am desperate to try and find some other type of therapy for him. Do you have any suggestions? I so want this to stop. I feel it is abusive as well as being a waste of time. Thank you for reading this and for your blog!

realsocialskills said:

I don’t know what you should do specifically, because I don’t know you or your son or what the problem is. I do think there are some things worth considering.

Some thoughts about therapy specifically:

What is the purpose of the therapy?

Autism shouldn’t be seen as an indication that someone needs to be in therapy (particularly not many many hours of therapy), but it often is
Which means that a lot of autistic kids are spending time in therapy that they don’t need or benefit from
If that’s what’s going on, you might not need to find a replacement – it might just be a matter of stopping something that’s not needed
But sometimes there are reasons for particular types of therapy.
So, it’s worth asking:
Why does my son need therapy? What are the goals? Who are the experts who can help with this?

Some reasons that therapy can be needed:

Communication:

If a kid is having trouble communicating their thoughts and feelings in a way that others can understand, they need help with that.
Usually the best person to help with that problem is a speech language pathologist with experience with AAC.
SLPs with that experience can help kids with articulation if articulation is the main barrier, and can also help kids find ways other than speech to communicate.
Here are some resources for pursuing AAC implementation for your child.
ABA isn’t good for supporting communication because it assumes that the problem is lack of motivation, and because it’s biased towards doing things that make good data, which often interfere with communication development.
PECS isn’t good enough, because it doesn’t give people enough words. 9 year olds have more to say than requests.

Literacy:

Some kids have a lot of trouble learning to read
Kids struggling to read benefit from reading/literacy specialists
Literacy/reading specialists have specific training in teaching reading and troubleshooting reading problems. They have a lot of tools that behavior therapists don’t have. (Because behavior therapists are experts in training and modifying behaviors; they are not experts in teaching reading or figuring out what the cognitive barriers are.)
For some reason, this isn’t considered a special ed service, and it might not be offered to your kid if they’re in special ed (since people sometimes don’t think across categories)
But you can likely get it if you ask for it on their IEP.

Movement:

Some kids have a lot of trouble with fine motor skills or gross motor skills
Eg: Some kids need a lot of help figuring out how to hold a pencil
Or need to learn to move in safe ways: eg: some kids walk with a gait that will cause them long-term injury if it’s not corrected
Occupational or physical therapy can sometimes be helpful for this kind of thing
(Sometimes other things can also help, like general or adapted gymnastics or art classes and related things. Not every problem needs to be solved with therapy).

Emotional issues:

Being autistic is hard. Going through puberty is hard. Doing both at once is really hard.
Some kids benefit from psychotherapy to support them in dealing with this, or with other things
Finding a good therapist for kids can be very difficult, and I don’t really know how to do it well. But I do know that it can sometimes be a really good thing.
For some kids, animal-assisted therapy works better than talk therapy or play therapy

Psychiatry:

I want to be cautious about this because a lot of autistic kids and other kids with developmental disabilities are on inappropriate and dangerous medication
I’m *not* saying that your kid needs medication. I’m not saying that you should trust suggestions to medicate, or that you should cooperate with a school insisting on it.
What I *am* saying is that there are legitimate uses of psychiatric medication and that for some kids (and adults) it can be game-changing.
(Eg: Some kids gain the ability to understand school and do assignments if they take ADHD stimulants. For some kids, anti-anxiety medication opens up a lot of new possibilities.).
All that said, be careful about this. Some people might want to prescribe your child medication as a form of chemical restraint to control their behavior, and that’s not something that’s going to help them.
It’s important to have a clear sense of what the medication is supposed to do, what the risks are, and what side effects to look out for
And if a medication doesn’t seem to be helping or seems to be causing your child a lot of pain or distress, take that seriously and insist that it be addressed
(You can’t count on doctors to do this on their own initiative; you have to be proactive about making sure you understand the medication and the impact it has on your child.)

A general consideration: Don’t trust true believers and those who make excessive claims:

No approach works well for everyone.
True believers are not trustworthy. People who think their approach is 100% universally effective will not treat you and your child well if it’s not working, and will not know how to try other things or make good referrals.
No approach will cure your child’s autism. It’s probably better to avoid people who claim that their approach will be deeply transformative.
Therapy can teach your child skills. It can help them understand themself and the world better. It can help them communicate more effective. It can help them learn how to do things and troubleshoot. It won’t take away their disability or make them a different person.
Therapy is more art than science. Be suspicious of people who claim that their approach is strictly evidence based.
(They probably won’t treat you and your child well if your child has needs that their theory doesn’t predict. People who go on about being evidence-based tend to ignore the evidence of the real child they’re dealing with in favor of the ~evidence-based~ child they’re imagining based on their theory)
No therapist is a good match for every child, no matter how skilled they are or how good their method is
Be cautious of people who claim that all children like them, all children benefit from them, or that they just love all children. People who think that aren’t usually very good at seeing children as actual people, and are unlikely to be respectful. (And also unlikely to handle it constructively if your child dislikes them or finds the things they’re doing with them unpleasant).
There is nothing that all children like. (Consider the fact that many children hate chocolate and Disneyland).
The best therapists are people who are willing to be honest about what their skills are and aren’t, and the advantages and drawbacks of their methods. They will understand that match matters, and make a referral to someone else if it doesn’t seem like it’s working well.
Good therapists respect you as a parent and respect your child as a person. If a therapist is constantly making you or your child feel like a failure, something is wrong and needs to change. Therapy shouldn’t be like that. Therapy should be helpful and respectful.

Also, consider getting psychotherapy for yourself:

Parenting is hard. Single parenting is harder.
Learning to parent a disabled child in a world hostile to disability is also hard
Your own feelings matter, and it’s important to get support in dealing with them.
It can be hard to find a good therapist to help with this — a lot of therapists believe toxic things about disability and parenting disabled kids (because therapists come from the same culture as everyone else).
You may or may not be able to find someone good.
But if you can find a compatible therapist who shares your values, therapy can help a lot.
Just, generally — don’t forget that you are dealing with a lot of hard things and that your needs and feelings are important.
If you are miserable, something is wrong and needs to change.

Likewise psychiatric support:

Depression is common. So is anxiety.
Sometimes toxic support groups will encourage parents (especially mothers) to see despair and panic as inevitable results of raising autistic kids
But they’re not. Parenting an autistic child doesn’t mean you have to be depressed and it doesn’t mean you have to be constantly anxious and afraid
If you’re depressed or anxious, that’s a problem that needs to be addressed
And it might be something that requires medical treatment.
If you think that you might need help, take that seriously.
(And don’t try to treat your own mental health struggles by trying to fix your kid — it won’t work.)
I don’t know you so I don’t know if this is an issue for you. I just know that it’s common.

Beyond issues of therapy: can you get him moved to a mainstream class?

Being autistic doesn’t mean that your son has to be in an autism class. (Even if that’s where the school wants to put him.)
If he hates ABA, he might do a lot better in a regular class.
A lot of kids do.
Even if he can’t talk or demonstrate learning, he can still be in a regular class, and it can still be better than being in a separated ABA class.
You might have to fight for this in certain school districts, but the law is on your side if you want to do so. (And there are lawyers who specialize in special education issues).

More generally:

The Autistic Self Advocacy Network is developing resources on insurance coverage for services other than ABA.
The current version (as of this post) is about Medicaid, and information about private insurance is coming soon (so if you’re reading this post and it’s a while after I posted it, click through to the link even if you don’t have Medicaid)

Don’t do this alone:

School systems and insurance companies and options are really overwhelming.
It helps a lot to get perspective and support from parents (and disabled adults) with more experience with the school system you’re dealing with
You’re probably not the only one in the system who has had to fight to get the school to do something other than ABA. (The Department of Education recently put out a letter about this problem.)
If you can find other local parents of disabled kids who are working to get their needs met respectfully, it will probably get a lot easier
They might be hard to find, because parent support groups are often toxic. For some reason, this is particularly true of autism-related parent support groups. A cross-disability group might be a better place to find good support.
(There isn’t any educational need or support need that is completely unique to autistic kids. Everything is shared by at least some people in at least some other disability groups.).
It’s also worth the effort. Even one person who gets it will help a lot.
Among other reasons: You get better results at IEP meetings if you come with a support person (even if they’re not an expert).

Other support issues:

If he’s socially isolated, the solution to that may not be therapy. It may be to help him find people who he connects with well. Which may or may not look the same as it looks for most other kids his age:

That may not be kids at school. Not all kids have friends at school, and that can be ok.
It may not be kids his exact age. Some autistic kids get along better with younger or older kids, and that can be ok too.
One thing worth trying is finding other kids who share his interests.
Or a non-theraputic class on one of his interests. Or something else you think he might enjoy. (Eg: An after school art class. Or a video game club.)
The Internet can be game-changing for some autistic kids. Eg: Playing Minecraft on a server. There are some kid-friendly servers that limit access to people who follow the rules. (Autcraft is specifically designed for autistic kids; there are other kid-oriented servers. Which someone likes is a matter of preference.)
Disability-oriented groups can also be a good thing, if they’re not about therapy or changing people. Eg: The Special Olympics, which is about access to sports in an environment that values people with intellectual disabilities, can be a very good thing for some people who are eligible.
Social skills groups are not good for this, because they’re not about friendship, they’re about getting kids to act out a certain script of what adults think kids should act like. That’s not fun and it’s not a good place to make friends.
But a social club for kids with disabilities (or autism specifically) to hang out with each other can be a good thing. It depends on the context.

Some other non-therapy considerations on how to help your son: It’s important to listen to and talk to your son:

A lot of autistic kids don’t get listened to very much
If your son doesn’t use language very much, it’s still important to talk to and listen to him
If he has unusual speech, you might be inadvertently writing him off as joking or rude when he’s trying to communicate something.
Here’s a post about ways to listen to people with unusual speech.
Also, sometimes when autistic people repeat something over and over, it’s meaningful communication that needs to be taken seriously.
More generally speaking: Autistic communication and body language is often dismissed as meaningless, stimming, or sensory-seeking.
Sensory-seeking is a real thing, but a lot of what’s interpreted that way is actually meaningful communication. It’s important to listen.
The more you learn to understand your son’s communication, the more possible it will be to solve problems and help him learn

It’s also important to talk to your son about his disability:

If your son knows things about his disability, he can make better decisions
If he knows what you think about his disability, your actions will make more sense to him — and he’ll be in a better position to correct you if you’re getting it wrong
This is important whether or not he can talk, and whether or not you think he can understand
I wrote a bigger post about that here

Just, generally speaking, it’s important to involve your son in these kinds of things:

I’m not saying let him decide everything; that wouldn’t be remotely appropriate for a 9 year old.
But, just like with other 9 year olds, when there’s a problem involving him, he needs to be involved in figuring out the solution
Or when decisions are being considered about him, or some change might happen that will affect him in a major way – it’s important to remember that he has a perspective and that his perspective matters
He will know things about his behavior and his needs and his feelings that you don’t know — for the same reason any 9 year old kid will know things about themselves.
Even if you can’t figure out how to have these conversations effectively yet, it’s important to keep trying
Whether or not you know how to find out what he thinks, whether or not his perspective changes the outcome — it will make a difference that you care what he thinks and make an effort to listen to him

Give him the right words for feelings:

Sometimes kids with disabilities are only given the emotional language of happy/sad/angry/excited.
But kids have more complex feelings than that.
Kids with disabilities also feel shame. And humiliation. And loss. And grief. And anticipation. And disappointment. And joy. And love. And embarrassment. And any other emotion that anyone else feels
Their feelings are important and need to be acknowledged.
Particularly – shame and humiliation are very, very frequent experiences for disabled kids, and they’re often not acknowledged at all.
It’s humiliating to be teased for being disabled. Or to have to do pointless repetitive things adults tell you to over and over. Or to be constantly told that your body language is bad and wrong, or to be treated as though you’ve done something disgusting when you flap your hands as an expression of happiness.
“You feel sad” or “you feel angry” does not begin to cover what that feels like.
Disabled kids have the same range of feelings as any other people, and their feelings need to be acknowledged and taken seriously.

In short: You don’t have to do ABA (even if your school system wants you to). There isn’t really a general approach that replaces it — because ABA makes overbroad claims, and there’s no approach for which those claims are true. Good approaches address specific issues and don’t take over your life. There are a lot of different things that a lot of different kids (and adults) benefit from. Which things will be helpful to your son depends on what his needs are.

Anyone else want to weigh in? What have you found helpful for your child (or yourself) other than ABA?

When people keep asking why you don’t have kids

June 7, 2015June 21, 2021 Real Social Skills

A reader asked:

I’ve had a hysterectomy and I live in a region where it’s very odd (like, statistical outlier odd) for a woman not to have kids by my age.

So it’s fairly common for people to continue to harass me about why I don’t have kids and not take any of the polite attempts at diverting the subject as hints to leave me alone until I tell them the truth.

Then when I tell them the truth they get mad and say that it’s too much information. Any advice for dealing with this?

realsocialskills said:

It might help to be direct about saying it’s a personal question.

I’m not sure how your conversations are going. I’m getting the sense that they might be something like this:

Them: So, why don’t you have kids yet? When are you going to have them?
You: Nice weather we’re having. But it’s summer and so it will probably rain soon. Do you think it will cause flooding again?
Them: Oh, probably. It usually does. But what about kids? Are you seeing anybody? Fertility doesn’t last forever.
You: So, I have this great new recipe for a seven-layer congealed salad.
Them: Children are a blessing. Life really can’t be complete without them.
You: That may be true, but I had a hysterectomy, so it’s not happening. Now can we please talk about something else?
Them: Why would you tell me something like that?!

It might help to add a warning layer before you tell them the truth. One possible layer: Saying it’s personal and that you don’t want to talk about it, then an immediate subject change:

“That’s awfully personal. I don’t like to talk about this.”
“That’s private medical information.”

Another possible layer: Asking rhetorical questions that warn them that they might not actually want an answer. This can make it harder for them to blame you, and more likely that they’ll back off:

“Do you really want the gory medical details?”
“That’s a very personal question. Do you really want to ask that?”
“Are you sure you want an answer to that?”

Another possibility: Answering the question in a way that’s a bit less graphic but still gets the point across:

“It just hasn’t been in the cards.”
“I can’t have children.”
“I’m sterile.”
“It’s not medically possible.”

If you’re in the South, there are some nuances about how to make people feel bad about asking inappropriate questions that I don’t really understand. (Which is part of the reason I don’t live there anymore.) It’s mostly a matter of affect. I know that it involves inserting a certain kind of pause and icy body language that tells someone they’ve crossed a line, but I don’t know how to do it or describe it well. If anyone who is better at that wants to weigh in, that would be welcome.

Short version: If your attempts at subtly deflecting intrusive questions are failing, it can help to more explicitly say that the question is too personal and that you don’t want to answer it.

Conflicting access needs

February 10, 2015June 21, 2021 Real Social Skills

A reader asked:

I communicate best by writing (email, text, etc) and have a hard time with methods of communication that are voice-heavy (Skype calls, phone calls) because I have auditory-processing problems. Several long distance friends do better with auditory communication and worse with writing. But they speak really fast/garbled/quietly, so I can’t understand them sometimes. I end up avoiding them because it’s too frustrating for me to ask them to repeat every sentence, but I don’t want to. Please help?

realsocialskills said:

A couple of options:

Ask them what they think

Is their need to use voice methods of communication on the same level as yours?
Would they be able to use text for you sometimes?

Use typing for repeating:

It might be less frustrating to use Skype than the phone if you make good use of the typing feature
Would it work to use text to ask them to repeat things, and have them repeat it in text rather than voice?
That might make communication easier for both of you

Use something higher quality

If sound quality is making them hard to understand, it might be a problem you can solve
Different video chat services do things differently
It might make sense to try several and see if some are more comprehensible than others
If you can upgrade your internet, it might be worth doing
Getting better headphones might also help
It also might help if they get a better microphone instead of relying on their computer’s internal speakers
If you have access to a landline, sometimes the audio quality is better than on a cell phone

Use an interpreter.

You might be able to use something like Sprint Ip Relay to make TTY calls over the internet.
There’s also a thing called ClearCaptions that’s a captioned phone service that live captions calls. You have to be willing to swear that you’re Deaf, hear of hearing, or otherwise phone disabled. (I think that having auditory processing problems that cause you to avoid using the phone ought to count, but I don’t know if they think that, and I don’t know how much they investigate.)
There are probably other options along these lines that I don’t know about. If anyone knows of good options, please comment or send an ask.

Use emailed videos

Maybe they could email you videos instead of emailing you emails?
Then you could watch them more slowly and repeat stuff
Like video email more than video chat
And then you could maybe respond in the way that’s easiest for you, which might be text

Short version: Keeping in touch with friends can be hard when you have competing access needs for forms of communication over long distances. There are some options. Scroll up for details.

Anyone else want to weigh in? What have you found works for long distance communication between people who find speaking easier and people who find speech difficult to understand?

Things to do on Christmas if you don’t want to celebrate it

December 24, 2014June 10, 2021 Real Social Skills

For those who don’t celebrate Christmas, the 25th of December can be a boring, annoying, or lonely day in Christian-dominated cultures. Almost everything shuts down, and the atmosphere is dominated by a holiday almost everyone else is celebrating that you’re not part of.

Here are some things you can do on Christmas other than celebrate it:

Chinese food:

Chinese restaurants are often open on Christmas
You can go there and eat food

Gatherings unrelated to Christmas:

If you have friends who also don’t celebrate, Christmas can be a good time to hang out
Gathering on Christmas doesn’t have to be a Christmas party

Going to work:

If the place you work is open on Christmas, most people probably want to avoid working
Working on Christmas is a nice thing to do if you don’t celebrate
In some fields, it’s also a relatively quiet shift

Going to a movie:

A lot of movie theaters are open on Christmas
Some of the movies are Christmas-themed, but a lot of them are not

Netflix/Hulu marathons:

Netflix and Hulu both have lots and lots of things to watch
Most of which are not at all Christmas-related
Hulu ads might be, though. If you want to completely avoid Christmas stuff, Netflix is a better option
This can be a good thing to do in a gathering, if you have friends who also don’t celebrate Christmas

Reading books:

Reading a new book is a good way to fill time and be absorbed in something interesting
If you don’t have any books you want to read, here are some ways to get eBooks:
Project Gutenburg has a huge collection of free eBooks that are out of copyright
Oyster Books is an ebook subscription service with a free trial.
Amazon also has an ebook subscription service (but it has a lot of junk and is kind of hard to nagivate).

Wikipedia:

If you’re bored and need something to be interested in, Wikipedia can be a good place to go
If you click the random button enough times, you will probably eventually find a page that interests you

Short version: Christmas can be boring for people who don’t celebrate it since most things shut down on Christmas in Christian-dominated cultures. Scroll up for some suggestions about stuff to do other than be bored.

Red flags vs fear of new things

November 21, 2014June 10, 2021 Real Social Skills

I don’t know a solution to this, but this is a problem I think it’s worth discussing: It can be hard to identify red flags when you have a general fear of change and trying new things.

For some of us, anticipating change always or usually feels bad, regardless of whether there’s anything actually wrong. For instance, I hate all new TV shows until I’ve watched them with someone else at least three times. To use more weighty examples: for a lot of people, moving to a new apartment, taking a new job, starting school, getting close to another person, exploring a new hobby, eating new foods, or anything that involves change, will at first invoke an unreasonable sense of dread whether or not anything is actually wrong.

For most people who have routine fear of new things, it can sometimes be important to override that dread and do some new things anyway. Because sometimes change is necessary, or an improvement. But overriding and ignoring dread all the time causes a serious problem.

The problem is – sometimes the feelings of dread are because you’re noticing red flags. Sometimes the problem isn’t that you’re generally averse to change; sometimes the problem is that you’re noticing something that’s actually wrong.

I’m not sure what the solution is. Most people get told that the best way to avoid walking into trouble is to always trust your gut. That’s not necessarily viable for people whose guts tend to dread all change. Trusting all of those instincts would mean never trying anything new, and also never walking away from bad situations (since that would have to involve change). But disregarding your gut all the time doesn’t work well either, because sometimes it’s the only thing alerting you to trouble.

I think the best approach might be: listen to your gut, but don’t necessarily obey it. I think it’s a good idea to think, in as concrete terms as possible, what your gut feeling might be about. Some examples of questions that some people find helpful in that regard (not exhaustive, and not all the questions on this list are helpful for everyone with this problem):

Is the dread you are feeling the same way you always feel when you’re doing something new, or does this feel different?
(If it feels like a different feeling, it’s very likely something you should be taking seriously)
Are you afraid of a particular person?
Do you know why you’re afraid of them? Is it that they’re unfamiliar, or something in particular about them?
Are you afraid of a particular risk?
Does something seem physically unsafe?
Are there other available options that would be safer?
Do people seem to be treating you respectfully?
Is someone being mean to you, or to other people, in a way that’s making the new thing seem inadvisable?
Are people assuming that you can do things that you can’t?
Is anyone treating you like a child?
Is someone taking your private decisions weirdly personally?
Are you being pressured into spending money you can’t afford to spend?

I don’t think that there is a general answer to this. I think that deciding whether to go with your gut feeling, or whether to assume that you’re just fearing change, is something that you have to decide on a case by case basis. Either option involves risks; it’s ok to decide which risk you’d rather take in a certain situation. Sometimes that will mean you do the new thing (and risk ignoring a red flag); sometimes it will mean you don’t do the new thing (and risk avoiding a necessary or beneficial change for irrational reasons). Sometimes that will mean doing the new thing, but cautiously. Sometimes that will mean modifying the new thing. All are legitimate approaches; you’re the only one who can decide.

It’s ok to decide that something real is going on and that you’re not going to do the thing (even though it’s possible that you’re afraid for no good reason). It’s ok to decide that you’re going to risk doing the thing (even though it’s possible that you’re ignoring a red flag.) Both have risks. There’s no generalized answer to every situation; it’s a decision you have to make for each situation.

Short version: If you’re generally averse to change, it can be really hard to tell whether your apprehension about a new situation is irrational fear of change, or a red flag you’re picking up on. It can help to evaluate in concrete terms what you think you might be noticing.

Comfort in a new flat

April 18, 2014June 21, 2021 Real Social Skills

A reader asked:

This may be a strange question and isn’t really related to social skills, so I apologize if it’s a wrong place to ask. I’m autistic and recently I moved flats. I lived in the old one for 15 years. No matter how much I try, I don’t feel at home in my new flat. I can’t relax, it doesn’t feel like my safe place. I feel alien and it makes me stressed and tired. Do you (or your followers) have any idea what I can try to do to get used to it? It’s a new place, new furniture, and nothing feels right.

realsocialskills said:

It might be a matter of time. If you wait long enough, things might start seeming more familiar.

But in the mean time:

I wonder if it would help to do some really familiar things?

Like, do you have a go-to TV show that you’ve watched over and over? Or a book you’ve read a zillion times?
Reading/watching that a whole bunch of times in your new place might help it to feel comfortable and familiar.
Are there foods that smell or taste like comfort to you?
Like, do you like the smell of cookies baking? Did you bake in your old place? If so, baking here might help too.
Or ordering a kind of food you ordered a lot.
Are there stim toys or blocks or anything that feel comforting and familiar to you? If so, using them might help. (I never really feel at home in a new place until I’ve made a pattern with my pattern blocks.)
Do you have the same blankets you used to have? If not, it might help to get some that are similar.

Also, it’s worth checking around your place to see whether something is actually bothering you. It might feel like unfamiliarity when it’s actually that you’re physically uncomfortable, for instance:

Are the lightbulbs in your new place bothering you? Some people find florescent bulbs intolerable. If your old place had incandescent bulbs and your new place has CFLs, changing the lights might help.
How is the temperature? If the air is uncomfortable, you won’t feel as good in a place. Turning the temperature up or down, or getting a fan, might help.
Are there noises that bother you? Or is it too quiet? If so, wearing headphones or turning on background noise that you like (music, white noise, TV, etc) might make you more comfortable

Computer games to teach boundaries?

March 29, 2014June 21, 2021 Real Social Skills

sighsexual asked:

I love this blog so, so, so much and I am so happy it exists. I go to school for special education and game design and I have devoted a large portion of my life working with children with specific needs, helping them to learn new tricks to feel more included and comfortable in social spaces. I was eventually hoping to create a video game that would help to teach these very concepts, as well. I’d love to hear your thoughts on that, if you wouldn’t mind sharing ^_^

realsocialskills said:

I don’t know huge amounts about game design, but I’ve wondered if there’s a way to use games to teach people about boundaries.

Maybe you could make a game about saying no?

And I’m not talking about “say no to drugs” or “resist peer pressure to do things adults think you shouldn’t” or any of that. I’m talking about figuring out what you want, and saying no when you don’t want that thing.

I think it might help to make a list of situations in which people might be pressured into making choices one way or the other. Like:

when adults want you to be friends with someone
when people want to play with you
when someone wants to borrow your toy
when someone wants your phone number
when someone wants to be your girlfriend/boyfriend
when someone wants a hug

And then make game situations involving those things? This would be hard to write, but I bet it could be done. (One reason it would be hard to write is that saying no doesn’t always work even when you have every right to say no, and it’s important not to teach kids that it’s their fault when they can’t make people stop hurting them.)

It’s really, really important for people to be able to assert boundaries. And people with disabilities are often taught from early childhood that they aren’t allowed to have any boundaries, dislike anything, or say no.

A shorter version of the last post

March 17, 2014June 21, 2021 Real Social Skills

As disabled people, we learn early that it’s our job to protect abled people from ever having to notice either the logistical problems or the hate we face. And especially, we learn not to show that it hurts us. And double especially, we learn that we are not allowed to tell friends or caregivers or ~nice ladies~ or others that they are hurting us. And triple especially, we learn that we are not allowed to be angry because that’s ~just the way it is~ and ~people don’t understand~.

I think that protecting abled people from having to notice disability and ways we are harmed as disabled people goes so deep we do it automatically and without noticing most of the time. And abled people *really* don’t notice, because they think it’s normal and natural and have not had any need to challenge it. They feel completely entitled not to have to deal with disability, and the entitlement feels so natural that they don’t even *notice*. And we don’t notice how much we protect them, either.

I’m not sure what to do about that, but I think it’s worth figuring out how to get past it.

When it takes a long time for someone’s ableism to become apparent

March 17, 2014June 21, 2021 Real Social Skills

A reader asked:

I’m physically disabled, and it seems like it usually takes abled people i become friends with a LONG time to “show their true colors” about it. I’ve seen it take 2 years from the first time they knew i was disabled and I openly spoke about it around them. Is this common? Why the heck so long?? Are they actively trying to hide it….or am i just missing a lot of subtle red flags? (Hard to imagine since @ this point I actively watch for them, but anything’s possible!)

realsocialskills said:

I’ve been wondering about this recently, too. I mostly encounter it in professional contexts (and I’m not sure whether to describe my disabilities as physical or not since autism affects my movement in disabling ways but I’m not mobility-impaired), but I think it’s a similar dynamic.

I think that it’s that abled people really, really don’t know very much about disability. They don’t know about the sheer logistical challenges we face, and they *really* don’t know about the stigma.

They think, on some level, that disability is an overwhelming tragedy, and that if we do things other than be overwhelmed by tragedy, then disability can’t really matter much. And they are really, really not emotionally prepared to deal with the fact that disability matters all the time, and they’re not at all prepared to deal with it in a matter-of-fact way. And meanwhile, for us, it’s just *life*.

We learn early that it’s our job to protect abled people from ever having to notice either the logistical problems or the hate we face. And especially, we learn not to show that it hurts us. And double especially, we learn that we are not allowed to tell friends or caregivers or ~nice ladies~ or others that they are hurting us. And triple especially, we learn that we are not allowed to be angry because that’s ~just the way it is~ and ~people don’t understand~.

Some of the people we protect have been exposed to a lot of disability awareness and sensitivity training. And who can recite a lot of information about various conditions, know not to pet service dogs, and would never touch someone’s mobility equipment, and who tell others off for using the r-word. And maybe they know what the ADA is and know a few horror stories about institutions in the 60s. And, they think that means they know how it is – they have no idea how sanitized all of that is.

Sensitivity training teaches them that we are just like them. It does not teach them to cope with all the ways in which we are very different.

I don’t have a good answer to this. The only that I’ve found is that it helps to be more open with my friends about what I am experiencing, what my limitations are, and how I feel about what is going on. There’s a price I pay for that, though. The other thing that helps is having more disabled friends, or friends who understand being marginalized in a way that your family is not (eg: I’ve found that some nondisabled LGBTQ people have been able to relate to a lot of this.)