Tag: disability

Using the memory you have

Real Social Skills

A reader asked:

I have memory issues. Things like names, dates or times, directions, and other important details often escape me. Lately, I’ve been using “external memory” in the form of a notebook or my phone.

However, people tend to get impatient or bored at best when you’re constantly consulting a notebook in order to tell them what you need.

At worst, they talk over me, try to tell me what they think I want, or walk away.

How do I get people to understand?

Or should I just work on fixing my memory instead?

realsocialskills said:

A few things:

Don’t wait for better memory:

  • Improving memory is possible for some people; not everyone
  • Whether or not it’s possible for you, you need to communicate now
  • Communication shouldn’t wait for cognitive changes
  • It’s important to make strategies that work with the cognitive abilities you have now

Meanwhile, you might be able to make some of your external memory faster. Here are a few possible ways of doing that:

Write things on your hand or a wrist band:

  • Looking at your hand only takes a second
  • This might work well for remembering what food you want to order, or what you want to buy
  • Or in general terms what you wanted to talk about
  • There are also disposable paper wristbands you can buy to put notes on
  • That works similarly, without having to write stuff on your hand

Put some information on your phone’s lock screen, eg:

  • Write something in your notes app
  • Take a screenshot
  • Make that screenshot your lock screen wallpaper
  • This means the information is available immediately once you get out your phone

Cheat sheets:

  • If there are things you consistently need to know but can’t remember, making pages with that information and putting them in particular places might help
  • Eg, for remembering what a store has
  • Or remembering what questions you’re likely to be asked
  • Or lists of people who are likely to be in particular places

Optimizing your notebook:

  • Eg: If there is information you need frequently, it might be worth putting it on dedicated pages with color-coded tabs
  • It also might be worth using something like a three-ring binder so that you can put information you need soonest at the front
  • Or even *on* the front, if you get a three-ring binder that has a space to put in a cover sheet on the front

Communication boards or apps:

  • Using communication boards or a picture-based AAC app might help too
  • Communication aids aren’t just for generating speech, they can also be for cognitive prompting reminding you what it’s possible to say
  • Making pages for particular situations might help you to communicate faster
  • You’d still have to open the page, but it might result in less hunting around for information once you get there
  • Having a page with a few options might make it easier to remember and process things
  • Associating images with things you’re trying to remember might make them easier to remember
  • If you keep the symbols in a consistent place and touch them some while you communicate, muscle memory might also help you to remember things
  • (Even practicing with boards in private without using an app to communicate directly might make it possible to use muscle memory to prompt yourself)
  • Proloquo2Go might work well for this
  • (Or maybe even something like Custom Boards, although that uses more childish symbols and that could be a problem)

It also might help to be more open about your memory difficulties:

  • Sometimes being open about how bad your memory is can help
  • If you don’t tell people what you’re doing, they might not be able to tell the difference between using external memory and ignoring them
  • (Especially if you’re looking at a phone; they might think you are facebooking or something)
  • They also might be trying to help, and might not realize that it’s being anti-helpful
  • If you tell people what’s going on and what would help you, *some* people will do the right thing
  • (Not all. But enough that it’s often worth it)
  • That also can allow you to ask people things that you don’t remember

Eg:

  • “I’m sorry, my memory is bad — could you remind me who you are?”
  • “Give me a second — I need to check my notebook.”
  • “I don’t remember when that’s happening — I need to check my calendar on my phone.”
  • “I actually get really confused when people try to tell me what they think I want — I’ll be able to find it faster if I check my phone”.

Also, if you’re approaching people and they’re walking away, it might help to change the order in which you do things to make it go faster from their perspective, eg:

  • Get out your notebook
  • Turn it to the right page
  • Put your finger on the piece of information you need to remember
  • Then go up to them and ask for help

Short version: If you have memory issues and rely on external memory aids, there may be things you can do to use them more quickly.

A thought on making difference ok

Real Social Skills

One issue with accommodations and modifications in school, is that it can often be hard to avoid stigma. Kids don’t usually like being singled out or doing things conspicuously differently. Also, nondisabled kids often resent it when disabled kids are allowed to do things that they are not allowed to do.

Further, one frequent objection to accommodations is “but if I let one kid do this, then all the other kids will want to.”

Sometimes that’s true — and, often, the best solution to that problem is to just let all the kids do whatever the thing is. Sometimes there’s no good reason to restrict access to something. Sometimes changing the rule works better than making exceptions to it.

One way that something works to correct this problem is to make some of their accommodations available to other kids who would like to try them. The kid who has a documented need for accommodations probably isn’t the only one who would benefit from them.

And even aside from that, it’s good for kids to explore the world and experiment with different ways of doing things. This is a good way to learn that difference is normal, and that doing things differently is a basic fact of life.

For instance, if one kid needs to use manipulatives for math, maybe try making manipulatives available to all the kids.

If one kid needs a large print worksheet, maybe make a few large print copies and let kids try doing it that way.

If one kid needs to chew stuff, maybe make things available for other kids to chew.

If one kid needs to use fidget toys, maybe make them available to all the kids who would like to try it.

If one kid needs to type, and you have the resources to make that available to other kids too, maybe let them try doing assignments that way. And let the kids that works better for continue to do it.

And, beyond that, it helps to get in the habit of providing different ways to do things even when there isn’t a kid who needs them as a specific accommodation.

Not in the sense of “take a walk in the disabled kid’s shoes”, this is not a disability simulation. The point shouldn’t be empathy building, and it should not be presented as being about the disabled kid. The message is “there are a lot of legitimate ways to do things, and it’s ok to experiment and figure out what works for you, even if most people don’t do it the same way as you”.

You can’t always do this, and you can’t always do this for everything. When you can, it helps, a lot.

keeping your privacy in the aftermath of a suicide attempt

Real Social Skills

fenisoffended asked:

I’m visibly disabled as the result of a suicide attempt. Do you have any advice on how to respond when people ask what happened?

I think it’d be uncomfortable to tell casual acquaintances or strangers etc that I attempted suicide, but I don’t really know what else to say other than a flat-out lie.

(It was an overdose, so saying the cause without mentioning suicide would also make people uncomfortable and they might think less of me)

realsocialskills said:

I think there are three basic approaches that allow you to keep your privacy without lying:

  • Tell a partial truth
  • Use humor to deflect the question
  • Say that you don’t like to talk about it

Telling a partial truth works by saying something that is true or true-ish, doesn’t cause their mind to jump to suicide, and (ideally) doesn’t invite further questioning. Some possible phrases along these lines:

  • “It’s an old injury”.
  • “I’m used to it.“

If you want to use humor to deflect it, one way to do it is to tell an absurdly obvious lie, eg:

  • “I lost a fight with a penguin”.
  • “You know how they say not to look directly at the sun? They’re right.”
  • “Alien abduction.“

Absurdly obvious lies mean (and are at least sometimes understood to mean) “I don’t want to talk about this, and I’m giving you a way to drop the subject without having to state explicitly that you asked an inappropriately personal question.” There’s an affective piece of how to pull this off that I’m not sure how to describe. It requires a certain tone of voice and body language.

You can also say explicitly that you don’t like to talk about it.

  • Bodies are personal and you have no obligation to answer questions about yours
  • If you say that you don’t like to talk about it, it’s best to follow that up with an immediate subject change
  • (If you follow it with a pause, some people will reflexively try to fill the pause by asking why you don’t like to talk about it)
  • It might work best to keep your tone polite and friendly at first, and then get more firm if they push the issue

eg:

  • Them: So, how did your face get to be like that?
  • You: I don’t really like to talk about that. How about that local sports team we both like? Can you believe they lost to that team we all hate?

Other things that mean “I don’t want to talk about it”:

  • “That’s a long story.” (plus immediate subject change)
  • “That’s kind of private.” (plus immediate subject change)

None of these are foolproof, but they all work at least some of the time.

Short version: If you don’t want to talk about something, telling a boring truth, an absurd obvious lie, or saying you don’t want to talk about it are all sometimes effective methods.

Taking a troubleshooting approach

Real Social Skills

Content note: This post is my answer to a scout leader who asked a question about my objection to describing things pejoratively as “attention seeking behavior”.

justmethesecond asked:

Hey, you made a recent post about attention seeking behaviors and how there are a lot of normal things that involve seeking attention.

But I have a question, as I staff at scouting and we have some kids that do demand personal attention when that is inconvenient or impossible for us to give (such as in a group activity, when you have ½ adults on 20 kids)

To elaborate a little bit further, the behavior things I am talking about are mostly kids that talk individually back at you when explaining things to a group (or in other ways, such as crying or trying to play (physical) games with you).

These types of behavior aren’t bad but they do sometimes limit our ability to explain things to a group of people.

And I was wondering how to deal with that?

realsocialskills said:

A couple of things:

There is no generalized way to deal with that. It depends on the situation.

Part of what you need to do is identify the problem more specifically:

  • Attention seeking isn’t the problem in itself
  • The problem is that the group activity isn’t working
  • Part of the problem *might* be that some kids need to learn what’s appropriate and what isn’t
  • Part of the problem *might* be that kids are being willfully disruptive and need to know that you won’t tolerate it
  • The problem might be something else entirely, and almost certainly has components that aren’t “that kid has a behavior problem” or “that kid is attention seeking”
  • There are a lot of possibilities, and I’ll get to some of them later in this post

Here’s why you shouldn’t call this “attention seeking behavior”:

  • “Seeking attention” is not an objective description of behavior; it’s a very vague theory about why someone might be doing something.
  • There is no such thing as generic “attention seeking behavior”
  • From your perspective, everything that annoys you by getting your attention when you don’t want to, can’t, or shouldn’t pay attention may feel the same
  • But it’s *not* all the same from the perspective of the kids who are annoying you
  • They’re doing what they’re doing for reasons, and the reasons are specific and individual.
  • (And they may or may not have anything at all to do with attention)
  • Eg: A child may be crying *because they’re upset*, and it might not be about you at all. They may in fact find the crying humiliating and be hoping that no one notices.
  • A child who is trying to play a game with you isn’t just generically trying to get attention. They’re trying to play a game. Which they may be doing for any number of reasons
  • A child who talks to you during the announcements might be trying to give input, ask a question, focus their attention, or any number of other things
  • Don’t collapse all of that into “attention seeking” as if it’s all the same.

Here are some troubleshooting tips:

Consider whether your expectations are age-appropriate:

  • Little children have a short attention span
  • They can’t sit and listen very long
  • They can’t wait very long for a turn to do something active
  • If you’re having problems with multiple kids, it’s very likely that you’re asking them to do something that they’re really too young for
  • If you’re asking kids to attend for longer than is reasonable for kids their age, *you’re* the one who is inappropriately seeking out attention when it’s not possible
  • (And just like you’re not doing it maliciously, kids who are disruptive are probably not doing it maliciously either)
  • It might be time to change how you do announcements and activities

Make sure the group knows your expectations:

  • It’s easy to assume that kids know the rules when they don’t
  • Things that are obvious to adults are not always obvious to children, especially young children
  • Kids are not born knowing how groups work
  • And different groups have different rules
  • Don’t assume that kids *know* that they’re not supposed to talk individually back at you when you’re addressing a group (there are actually environments where that’s allowed)
  • Don’t assume that kids *know* you’re not supposed to try to play side games or whatever
  • It can help to have a group conversation about rules
  • It’s particularly helpful if you get the kids’ input about the rules in that conversation
  • It’s likely that kids know things you don’t about what needs to be spelled out explicitly
  • And also things you don’t about what the rules need to be
  • Don’t do this as a punishment. Do this as a group conversation about rules. If it’s well into the year, you can say something like “So we realized that we forgot to set rules for the group. This week we’re going to start by setting the rules together.”
  • Many of the kids in your group will have done an exercise like this before; it’s a fairly common thing to do with kids
  • (Be careful though, don’t say things like “but you agreed to these rules!”. This isn’t really an agreement. This is you setting rules from a position of authority, and getting some input from kids about what the rules should be.

Redirect:

  • If you’re not saying in the moment that something is a problem, it’s important to start doing that
  • If you don’t object, some kids might be assuming you’re ok with it
  • Don’t be mean, but do speak up, eg:
  • “You can ask questions when I finish talking”
  • “I can’t play with you right now”.
  • It also helps if you can phrase it by telling them what you *do* want them to do, eg:
  • “Try and tag someone. I bet you can tag (specific kid).”.
  • If kids have trouble telling when it is and isn’t ok to talk, try having an object that someone holds when it’s their turn to talk.

Talk to the kids who are having trouble individually:

  • Talk to them about what’s going on (out of earshot of other kids)
  • Talk to them about why some of the things they’re doing are a problem
  • They might actually not know — no one is born knowing how to act in a group, and some kids need to have it explained explicitly
  • Even if you’ve had a group conversation about rules, it’s possible that they don’t get it
  • Or that they can’t follow the rules as they stand
  • It’s important to ask them what they think is going on
  • And if there’s a reason it’s not working for them
  • And if they have ideas about solving the problem
  • Kids don’t always know, but sometimes they do
  • And knowing that you care makes a difference

Parents also might be able to help you:

  • Parents (usually) know their kid better than you do
  • This is particularly true of elementary-aged kids
  • Most parents want to help their kids
  • Most parents have at least half a clue about what is helpful to their kids
  • Don’t use calling parents as a punishment
  • Do talk to parents when there’s a problem in your group and you don’t know what to do about it
  • (Be more cautious about this with older kids; teenagers have a developmental need for more privacy)
  • (Also be cautious about this if you suspect abuse. Talking to parents who are likely to be harshly punitive is not likely to make things better)
  • Say explicitly that this is not a punishment and that you’re asking for help
  • They will likely have helpful suggestions
  • (Not always; some parents are unreasonable. But a lot of parents are very helpful, if you listen to them).
  • Don’t assume parents are right; do listen to them. They often know things you don’t.

Ask for advice from a teacher:

  • Teachers spend all day working with groups of kids
  • Not all of them are good at it; but some of them are
  • Good teachers will know things you don’t about how to make activities and announcements work
  • If you know a teacher who you respect, ask them for advice
  • Ask these questions specifically:
  • “I’m having trouble with some kids in the scouting troop I’m running. Could I ask you for some advice?”
  • “Is this something that’s reasonable to ask of kids this age?”
  • “Do you have any advice about how to manage this problem in a positive way?”
  • “Do you know about something else that works well?”
  • Listen to what they say and consider why they’re saying it, but ultimately trust your own judgement. You are the one working with kids directly, and you’re the one who is ultimately responsible. Don’t do something that you think is wrong.

Google resources for teachers:

  • There are a *lot* of resources for teachers on the Internet
  • Most things that are relevant for teachers are also relevant for scout leaders
  • You can google activities for kids the age you work with, then consider which things on the lists are likely to work for kids you work with
  • Positive classroom management is also a good thing to google (particularly for the age you work with)
  • Not all teacher resources are good; seek out information, and use your own judgement about which advice to take

Consider the possibility that your environment is causing pain:

  • Scouting often takes place in physically uncomfortable outdoor environments
  • That may be intolerably painful for some of your kids
  • Are they being painfully bitten by bugs? If so, do they have bug spray? Are they using it? Is it working?
  • Are they getting sunburned? If so, maybe you need to change the procedure for making sure that all kids put on sunscreen.
  • Is the sun shining painfully into their faces?
  • Are they inhaling campfire smoke?
  • Are they sitting in a painful position?
  • Sitting cross-legged on the ground or floor is physically painful for some kids
  • (Likewise sitting on benches with no back support)
  • It might be that they’re trying to do things that will get them out of that position
  • If you suspect that this is a problem, try having kids sit in chairs and see what happens
  • Or try sitting around a table kids can lean on and see what happens
  • This is particularly likely to be the case for older kids or heavier kids
  • Positions often become intolerable as kids get bigger
  • It also might help to alternate between sitting activities and standing or moving activities in shorter intervals so that kids aren’t sitting as long

Are they hungry or thirsty?

  • Often when kids are disruptive, it’s because they’re hungry or thirsty
  • At certain ages where kids are growing rapidly, they’re hungry a *lot* of the time
  • Kids won’t necessarily realize that enough to ask
  • And they also may have been taught that asking is pointless because no one cares whether they are hungry or thirsty
  • Being proactive about this might help
  • Try making water easily available without kids having to ask for it (eg: by requiring them to carry water bottles)
  • If you’re not already doing a snack at the beginning of the meeting, try doing that
  • If you are already doing that, try making it something more substantial
  • Low calorie snacks suitable for adults who are trying to lose weight are *not* good snacks for the purpose of feeding hungry children
  • (Eg: celery sticks are not a good snack to get growing kids through a scout meeting; celery sticks with peanut butter might be. A handful of pretzels is not a good snack; cheese sticks might be.)
  • If you’re on a camping trip or something, you may need to feed the kids more often than you realize
  • If this is a problem, it’s probably *also* a problem for the kids who *aren’t* disruptive, so don’t just do this for the disruptive kids. Assume that all of the kids may be hungrier and thirstier than you realize

Don’t be mean:

  • If something feels mean, don’t do it
  • If you’d think it was mean if someone did it to you, don’t do it
  • If something is humiliating toward a kid, don’t do it
  • Don’t punish kids in front of other kids
  • It’s ok to say something like, “Not now” and redirect
  • It’s not ok to yell, or say something like “I’ve told you this over and over, why don’t you get it?”
  • (If you need to take a kid out of an activity and talk to them about it, have the conversation out of earshot of other kids)
  • Don’t have a big reward event and exclude some kids from it

Some kids need 1:1 support:

  • Some kids need a lot of help to do some things
  • If that’s the situation, the problem isn’t that they’re misbehaving
  • The problem is that they need more support than they’re getting
  • This may or may not be a problem you (or their parents) can solve
  • But it is something that should be on the table as a possibility for some kids
  • A caution about that: Sometimes people leap to the assumption that any kid they’re having trouble with needs a 1:1, and it’s usually not true.

Sometimes the solution is to change the activity.

  • No amount of clarifying rules and expectations will help if you’re asking a kid to do something they’re not capable of doing.
  • Or if you’re routinely asking them to do something that is extremely difficult and only barely possible for them
  • Or if you’re asking them to routinely do something they find actively distressing
  • If there are insurmountable barriers to a kid participating in an activity, then the activity probably needs to change
  • Some kids need to be actively doing something in order to pay attention
  • Some kids need attention in order to pay attention
  • A kid having these needs is not a behavior problem; it’s a support need

Thoughts on changing activities:

  • Some activities require a lot of turn-taking, passive listening, and waiting
  • Those are not great activities for kids who need a lot of feedback in order to know what to do
  • They’re also not great activities for kids who need to be actively participating in order to focus
  • If you have kids in your group who have that need, it is likely a good idea to switch to doing activities in which everyone is actively doing something most of the time
  • For instance:
  • Red Rover probably won’t work well with kids who have trouble with passive waiting
  • And a circle activity in which only one person at a time does something is likely to be even worse
  • Games in which everyone is actively playing, like tag or Simon Says, are likely to work much better
  • This is also true of group conversations:
  • Long conversations with a big group require a lot of passive listening. That’s a problem for kids who need to be active in order to focus
  • Having kids discuss things in small groups or with a partner might work better

Sometimes you can change an activity by creating a way for kids who’re having trouble a way to focus:

  • Eg: Kids who have trouble in groups might be able to focus if they take notes
  • Or if they have a fidget toy to fidget with
  • Or if they have a specific task (ie: if everyone is supposed to be preparing a campfire and they’re climbing on you, it might help to ask them to gather wood from a particular area)
  • A caution about this: Don’t use this as a reward or as a punishment.
  • Don’t assume any particular approach will work. Don’t single a kid out over their objections. (eg: If a kid doesn’t want to take notes or use a fidget toy, don’t make them just because someone on the internet says this helps some kids)
  • Sometimes minor modifications work; sometimes they don’t. When they don’t work, it’s time to try something else.

This isn’t an exhaustive list — there are a *lot* of things worth trying and thinking about. The important thing is to take a troubleshooting approach and to keep trying to identify and solve the actual problem.

Short version: Sometimes when you’re responsible for kids, they do stuff you don’t like. This is often treated generically as “attention seeking behavior”, but it shouldn’t be. Kids have much more diverse and complex motivations than that. Instead of calling it “attention seeking”, or ignoring them, adopt a troubleshooting approach to the problem. Taking a troubleshooting approach is much more likely to enable you to identify and solve the actual problem. Scroll up for some specific troubleshooting suggestions.

“I don’t see you as disabled”

Real Social Skills

I think that most people with disabilities have heard many people say, “I don’t see you as disabled!” in a tone that implies that this is a compliment.

It’s a strange thing to say. It’s especially strange since they will say that about even the most conspicuously and stereotypically disabled people. It sounds like an obvious lie.

I’ve been realizing lately that some people who say things like that aren’t lying. They really *don’t* see us as disabled, because they’re mentally editing out the disability.

They sort the world into people they can respect, and people they can regard as significantly disabled. So if they respect someone, they mentally edit out the disability. They can see a person and they can see adaptive equipment, but they refuse to see the disability.

They assume that, since they respect you and see you as a real person, that you’re not *really* disabled. They think that you may have a condition, but that you would ~never let it define or limit you~. They think that you can overcome everything with the sheer power of determination and positive thinking. They think that ~the only disability in life is a bad attitude~, and that, since you don’t have a bad attitude, you can’t possibly be disabled in any significant way.

And in real life, disability always matters. As Stella Young said, “No amount of smiling at a flight of stairs has ever made it turn into a ramp. No amount of standing in the middle of a bookshelf and radiating a positive attitude is going to turn all those books into braille.” There will be times when things aren’t accessible. There will be things we can’t do. There will be times when disability suddenly becomes visible and undeniable.

When disability clearly and visibly matters, people who ~don’t see us as disabled~ tend to lash out. Because then, as they see it, we’re not upholding our end of the bargain. We’re supposed to be the kind of people who don’t let disability matter. And if we’re the kind of people who can’t or won’t ~overcome disability~, then they don’t know how to respect us. And things can get really bad really quickly.

Short version: When people say that they “don’t see you as disabled”, they’re not always lying or awkwardly trying to be police. Sometimes they mean it. When they mean it, it’s often for a frightening reason. Proceed with caution among people who sincerely refuse to see disability.

Disability acceptance for partners

Real Social Skills

Anonymous said to realsocialskills:

Hi, my boyfriend is autistic on the Aspergers spectrum and I don’t know what to do when he’s overloaded. I just really want to help him calm down again.

Is there any advice you can give me?

realsocialskills said:

There’s a lot of things that could be going on. I don’t know you or your boyfriend, so I can’t really tell you much that’s specific to your situation.

I think it’s possible that you may be taking too much responsibility for your boyfriend’s overload. If so, it would be better for both of you if you let it go a bit.

There’s a narrative in the media that’s common, and destructive, that goes like this:

  • Disabled person (usually a man) can’t function
  • He meets an amazing person (usually a woman), and they get involved romantically
  • Through the transformative power of love, he is healed
  • Then either he stops being disabled or his attitude changes in a way that means disability no longer matters in any significant way

Sometimes this goes along with another trope, “the only disability in life is a bad attitude”.

  • People who buy into that trope believe that disability only matters if they let it matter.
  • And they disability can be ~overcome~ by positive thinking and not being bitter.

For disabled people, this narrative pressures us to pretend that disability doesn’t matter. Or to make it stop mattering through sheer force of will. For people who love us, it creates pressure to fix everything and make disability irrelevant through the power of love and support. In real life, neither of those things work.

In real life, disability matters no matter what people think about it and no matter how much others love them. Having a good attitude can make life better; it can’t make disability irrelevant. Love can make life better; it can’t make disability irrelevant either. Disability goes deep, and it affects a lot of areas of life. And sometimes things are hard.

Part of being a good partner to an autistic person is accepting that autism is going to matter. No matter how wonderful you are, you’re not going to be able to stop autism from mattering.

I don’t know what’s going on with your boyfriend and his overload. I do know that, for many autistic people, overload is an inevitable fact of life. Sometimes, it’s the price of admission for doing certain things we care about. Overload is not always something you can prevent or fix. Sometimes the decisions get complicated.

Your boyfriend is the one who is responsible for figuring out how he wants to approach overload. He is the one who needs to decide which risks are worth taking, which are worth avoiding, and how he wants to handle it when he is overloaded. You can’t protect him from this.

You might be able to help with some of it some of the time. Many autistic people like certain kinds of support in dealing with overload, for instance:

  • Having someone else pay attention to signs of imminent overload and point them out
  • Being reminded that leaving is an option
  • Being reminded that it’s ok to be autistic in public and that they can stay if they want
  • Help leaving an overloading place
  • Being left alone and having someone else run interference to keep other people from trying to intervene
  • Having a stim toy handed to them
  • Knowing that people they’re with aren’t going to try to stop the overload and will leave them alone
  • Water
  • Help finding a quiet place to go
  • Being able to hold someone’s hand
  • And any number of other things

Note that many of these things are mutually exclusive. Autistic people have wildly different needs and preferences around handling overload. I don’t know what your boyfriend needs or wants; that’s for him to determine.

The only way to find out what your boyfriend wants you to do when he gets overloaded is to ask him, and to listen to what he says.

  • It’s worth having this conversation when he’s not overloaded and is able to communicate readily.
  • It’s also important to listen to what he says when he’s overloaded, even if it contradicts what he’s said before (unless he told you beforehand not to)
  • The question shouldn’t be “How can I calm you down?”, because that might not be possible or something he wants.
  • The question should be something like “When we’re together and you get overloaded, how do you want me to react?”
  • It’s ok if he doesn’t want to have an intimate discussion about overload, and it’s ok if he doesn’t want your help.
  • But you do need to know what he wants you to do in that situation, and so it’s ok and important to ask.

Short version: Autism acceptance is important for partners of autistic people too. You can’t fix everything or make autism stop mattering. Sometimes things are going to be hard for us no matter what you do. Whether we want help, and the kind of help we want, varies from person to person. If you want to know, it’s important to ask.

When a class is harder than you expected

Real Social Skills

fir-trees-unite asked:

My entire life English has been my thing – my best class, I even just started writing a novel. And AP Lang is kicking my butt up down and all around.

Advice on avoiding the soulcrushing feeling that I lost a large part of my identity to this class?

realsocialskills said:

I think it might help to remember that this class is not an ultimate test of whether you’re good at writing.

It’s one class. I don’t know why it’s kicking your butt. There are a lot of possibilities.

For instance:

New skills that don’t come naturally to you:

  • Sometimes students who are good at a particular subject expect that everything about it will always come naturally to them.
  • In the long run, that’s unlikely to be true.
  • No matter how good someone is at something, there will probably be things that are difficult, unnatural, and have a steep learning curve.
  • This can be scary the first time students experience it, particularly if they have a lot of identity hung up in being good at something.
  • Particularly if they’re young enough that their peer group might be made up of people who also haven’t experienced struggling with their strongest subject much before.
  • If that’s the issue, it might help to remember that this is normal. Everyone struggles with something related to their field in the long run. That’s ok.
  • And it also might help to remember that part of being great at something is learning how to do hard things
  • Most people who write seriously consider writing to be difficult.
  • Writing is probably going to be hard sometimes. Sometimes it’s going to feel like a miserable slog. It’s still worth doing. For a lot of writers, writing through the stuck places is a vital part of what makes good writing possible.

The class might be designed to kick your butt. Some classes are like that, eg:

  • Some teachers assign things that they know are barely possible for their students
  • The point of this is to push you hard to increase your skills dramatically over the semester
  • Teachers who do this tend to keep making the assignments harder as their students develop more skills
  • Your teacher may be assigning books they expect most or all of the students to find extremely difficult to read
  • Your teacher may be having you write in ways that they know will be very difficult
  • Or holding you to very high standards that they expect to be only barely possible for you to meet
  • Struggling with that kind of class doesn’t mean you’re bad at English
  • It means that you’re in a class where the teacher is pushing you really hard, and not giving you any chances to do anything comfortable
  • If this is a factor, it might help to remind yourself that it’s ok to struggle when you’re being asked to do difficult things

The grading standards might be more difficult than you’re used to:

  • Different teachers grade differently
  • In most classes, there’s a default grade you get if you do all the assignments more-or-less competently. In some classes, that’s an A. In others, it’s a B. In others, it’s a C.
  • If you’re having to work much harder for grades than you’re used to, it may well just mean that the scale is different.
  • (Even if it’s a teacher you’ve had before; many teachers grade AP classes more stringently).

Your classmates might be different than you’re used to:

  • Sometimes students are used to being much better than their peers at a subject
  • Then they take an advanced class, and everyone else is good at the subject too
  • Then they’re not dramatically better at it anymore, and feel like they must not be good at it after all
  • This is also common among people who are used to being at the top of their class in high school, then go on to an elite school and have peers who were also at the top of their classes
  • If this is what’s going on, it might help to try to focus on doing things well rather than doing them better than your peers
  • And to remember that if you’re around others who are strong in your subject, you can learn from them as well as the teacher
  • You don’t have to dramatically outperform everyone else for your skills to be real
  • Writing well and reading seriously matter as ends in themselves, whatever test scores say.

The class might suck:

  • Some classes are terrible and make students feel terrible.
  • The teacher might be giving you unreasonable or unclear assignments
  • The assigned books might be excruciatingly dull.
  • The writing assignments might be pointless busywork that makes you hate writing.
  • The teacher might be mean.
  • Your classmates might be mean.
  • You might have access needs that the teacher isn’t meeting.
  • Or any number of other ways classes can suck.
  • Most people who go to school for a long time deal with classes that suck sometimes.
  • If that’s the problem, it might help to keep in mind that bad classes don’t mean you’re bad, and that the class will end.

You might have a lot of other stuff going on.

  • High school is hard on a number of levels for a lot of people.
  • Particularly the last two years, in which there can be a lot of pressure to believe that your future will be ruined if you don’t push yourself superhumanly hard.
  • Life in general can be hard for all kinds of reasons.
  • Sometimes when stuff is really hard, people find things difficult that they normally are able to do easily.

Mental or physical health:

  • If you have a mental or physical health condition, that can make school harder.
  • Some mental and physical health conditions tend to start in adolescence.
  • Long-standing conditions often also change or develop complications in adolescence.
  • Health conditions in adolescence are not always diagnosed quickly or treated appropriately.
  • Even when things are managed well, they still have to be managed, and that can still complicate things a lot
  • And that’s not always acknowledged, particularly when people want to reassure you that your brain is fine and you are totally mentally normal
  • The reality is that mental and physical health problems, as well as treatment, tend to make school harder
  • It can help to remember that it’s not your fault that dealing with health is hard and takes time and can suck in other ways and makes things other than health hard sometimes.
  • Or, as one of my friends once said to me, “it turns out that brains care more about oxygen than they do about academics.”

Disability issues:

  • Sometimes students with disabilities start needing academic accommodations when their classes get harder.
  • For instance, someone who could take notes by hand in an easy class might need a computer to take notes in a hard class.
  • Someone with dyslexia who can read 20 pages a week of standard print might need to use a screenreader for a class that requires 120 pages a week.
  • When students haven’t needed accommodations before, or haven’t needed them in a while, it doesn’t always occur to anyone that they might need them now
  • (Particularly if they were pushed really hard to learn to do something in the standard way, and were able to do so for a few years before classes got harder).
  • If you have a disability or suspect that you might, it’s worth considering whether you would benefit from modifications or support.

And in general: There are any number of reasons this class could be hard. This class is not a test of whether you are good at English, whether you are good at writing, or whether you should write a novel. If you want to write, you can do that, and do it well, no matter what happens in this class.

Short version: A lot of things can make classes hard, even in subjects you’re used to being good at. Those classes aren’t tests of whether you’re good at the subject, or whether you can keep doing the things you’re interested in. They’re just classes. It’s ok to do hard things.

Autistic kids need to be able to talk about disability

Real Social Skills

Disabled kids need to be able to talk about disability. Difference isn’t a good enough word. Everyone’s different from everyone else in some way. Not everyone has a disability. People who have disabilities need to be able to talk about that, both in general and specific terms.

I’m writing this partly in response to comments I’ve seen on several good posts that have been circulating recently on why it’s important to tell autistic kids they’re autistic.

I’ve seen some parent responses that seem superficially positive, which actually miss the point:

  • “Yes, we told him about that. We told him it’s the thing that makes his brain different, and that it’s why he’s so smart.” or
  • “We told her that autism means she’s awesome!”
  • “We told him he just thinks a little differently.”

That’s not good enough, because it doesn’t address autism as a disability. Knowing the word “autism” only goes so far. Kids also need to be able to talk about disability in a nuanced way, without glossing over things.

Kids will know that there are difficult and painful aspects of being disabled whether or not you talk about it. You can’t protect children from that knowledge by refusing to talk about it; you just end up sending the message that they’re on their own in dealing with it.

Here are some other things autistic kids need to know, beyond the word autism (not an exhaustive list by any means):

The basic version:

  • Autism is a disability
  • It’s one of the reasons some things are really hard for you
  • It also comes with strengths
  • You’re not going to grow out of it. You *are* going to grow up.
  • You can do things that matter.
  • There are other kids and adults like you, and we’re going to help you meet some of them
  • Some people are prejudiced against people like you. It’s ok to be upset about this.
  • Some things are going to be different for you than they are for most other kids, in ways that might not be predictable.
  • It’s ok to have questions
  • It’s ok to feel however you feel about all of this
  • Your parents and other supportive adults are here for you, and will help you figure things out and get help when you need it

Some other, more complicated (and also not exhaustive) information:

And any number of other things.

Disability is complicated. Disability is something we spend our whole lives dealing with, and that we never stop learning about. This is not something you can cover with your child in one conversation When you talk to your kids about being disabled, it’s really important to let it be complicated, and to be honest about it being a long-term conversation. It’s important that they know that you can handle talking about it, and that it’s ok for them to have questions, feelings, and to need help figuring things out.

Short version: Telling your autistic kid that they are autistic isn’t enough. You also have to talk to them about disability.

Sexuality resources for people with disabilities?

Real Social Skills

A reader asked:

Do you have good sex ed resources written for and about people with disabilities? Bonus if there’s resources for nonverbal people or “low functioning” autistic people (scare quotes intentional, of course). (Also, it’s okay if you can’t fulfill this request entirely. I’m just frustrated that I don’t know where to begin.)

realsocialskills said:

I know a few possibly-useful resources:

The Autistic Self Advocacy Network and Autism NOW published a handbook on relationships and sexuality, written by a variety of autistic authors.

I’ve heard good things about The Ultimate Guide to Sex and Disability: For All of Us Who Live with Disabilities, Chronic Pain, and Illness. (I don’t know whether that book addresses cognitive disability or not; I think it is likely relevant regardless.)

Temple University has a project aimed at providing adult vocabulary for adult AAC users. That project has a relationships and sexuality section, with a list of words that need to be added to AAC devices.

Mayer Johnson (a company that makes a lot of communication symbols) has a symbol set called “Communicating About Sexuality”. I do not know if it’s any good, and I kind of suspect that it might not be, because they describe it as being primarily oriented towards preventing sexual abuse.

This page also has a few symbols relevant to sexuality, but apparently primarily in the context of enabling people to report abuse. Here’s another one with a similar agenda. (Hat tip: PrAACtial AAC.)

I know that Dave Hingsburger does ed classes primarily designed for people with intellectual disabilities, and that he trains people who teach them. I have not seen them directly; I do have reason to believe that they are good. I don’t know how to find out when they are happening.

Open Future Learning has a video module by Dave Hingsburger about sexuality. It’s a resource designed for staff; the website subscription model assumes that an organization is buying a subscription. If you contact them directly, it is also possible to buy an individual subscription.

Diverse City Press publishes expensive DVDs about masturbation, abuse prevention, boundaries, self-esteem, and power. I have not seen them (because I can’t afford to buy them yet), but I’ve heard good things about them from people whose judgement I trust. They also have a couple of good books about abuse prevention that touch on sex ed a little bit (they say, among other things, that it’s abusive to deny people access to knowledge about their bodies, and also abusive to try to prevent them from having consensual sexual relationships).

Short version: There aren’t enough good resources on disability and sexuality. Scroll up for some of the ones I know about. Please send a message if you know of something good.

Safety vs making people feel safe

Real Social Skills

There are all kinds of affective things and cognitive tricks you can learn that make it more likely that people will trust you and feel safe.

It is possible to get really, really good at that without actually learning how to be trustworthy. You can be really, really good at making people feel safe, and still be a danger to people who trust you.

Sometimes it’s not a good idea to focusing on trying to make people feel safe.

Often, it’s much better to focus on learning how to be trustworthy. Two major components of being trustworthy are paying close attention to practical safety; and listening to the people whose safety might be impacted.

For example:

If you want to know what’s dangerous, it’s important to seek out the perspectives of people you’re trying to create safety for. This isn’t something you can do completely on your own.

Part of this is seeking out writing about danger and safety by members of the affected group, or advocacy organizations run by members of the affected group. Another part of this is listening to the individual people who you are actually interacting with about their needs.

It’s important to communicate effectively about the things you are doing that might make trusting you a good idea.

It’s important to talk about safety improvements to make sure people know about them. (Eg: if you fixed a dangerous ramp, people need to know that it has been fixed). It’s also important to communicate your willingness to listen to people about their needs and fix things that are endangering them. It has to be true, and you have to do things to communicate that it’s true. It does not go without saying; willingness to listen and address safety issues in practical terms is actually fairly uncommon.

If you focus on practical safety through proactive research and listening to affected members of your community, you can get very far in building safe and welcoming community even if people do not feel safe.

Some people who do not feel safe still care very much about being there, and are willing to take risks in order to participate. It’s important to honor and accept that.

Some people aren’t ever going to feel safe. (And some of them will be right.) It’s important to accept them as they are, and not make feeling safe a prerequisite for participating.

Short version: “Making people feel safe” is often the wrong approach. Focusing on being safe often matters a lot more. Some people don’t believe that they are safe, and are willing to take risks in order to participate. They should be allowed to have that perception. They should not be pressured into feeling safe as a prerequisite for participation.