Tag: social skills

Solidarity can be better than comfort

Real Social Skills

ischemgeek asked:

Advice on expressing sympathy and lending emotional support to a family member whose child may be facing a serious illness? Both for the “dunno for sure” phase and for the “know for sure either way” phase. Comforting is not my strong suit and halp plz because this can’t be fixed so soothing is only way to be helpful.

realsocialskills said:

So, I’m going to answer this in two parts. This post is about emotional support.

I think that most people who are facing emotionally devastating situations need solidarity more than they need comfort.

One way to show solidarity is to acknowledge what’s going on, and to let them feel however they feel about it. People in awful situations often face relentless pressure to try to have a ~positive attitude~ and not be upset. This is particularly true of child illness, particularly if the illness is life-threatening, particularly if it is cancer.

This positivity narrative pressures people to think that they can somehow fix things with the power of positive thinking, and that they will somehow ruin things if they get upset or have feelings that aren’t 100% hopeful at all times. That can make things a lot harder.

People often end up feeling a lot of pressure to put on a positive and hopeful face around people who care about them. They also often face pressure to be constantly trying not to be upset. They can end up spending a lot of emotional energy taking care of the needs of people who want to comfort them.

And in reality — people facing difficult situation are going to struggle and have complicated feelings. And, in this case: People who have reason to suspect that their child is seriously ill have every right to be upset and afraid. And the last thing they need is relentless pressure to think positive and feel hopeful.

Probably the best form of emotional support you can offer is to listen without trying to make them feel better. You can acknowledge what is going on, and be someone who they don’t have to gloss over things with. You can be there with them while they feel however they feel about it. You can be someone who listens to them respectfully.

Many people facing awful situations don’t have that, and having it can make a big difference.

I wrote a while back about the importance of acknowledging that sometimes things are terrible, and also about some practical methods of listening to someone who is facing a bad situation.

Short version: If someone is facing a bad situation, trying to comfort them often backfires. It often works better to focusing on listening to them and expressing solidarity.

“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.

Maintaining privacy when people ask about a memorial object

Real Social Skills

Anonymous said to realsocialskills:

I have a rather specific social problem I was hoping you might help me with. One of my best friends committed suicide very recently, and I have a necklace with his name on it that I wear to remember him. Normally I wear it with the blank side facing out, but it does flip around, & people (who didn’t know him) have asked about it. I don’t want to outright lie, but this isn’t something a stranger needs to know.

Additional complication: this is still really raw, so sometimes the question hits wrong and I become visibly upset, which just makes the person more curious. How can I brush these well-intended remarks off as politely and quickly as I can, making it clear that I don’t want to talk about it?

realsocialskills said:

I wonder if it would work for you to say that it’s in memory of a friend without talking about the suicide?

Like, along these lines:

  • Them: That’s not your name, is it? Who is that?
  • You: Actually, it’s in memory of a close friend who died recently.

It might help to be explicit about how you want them to react. Most people are uncomfortable talking about death. Some people will be very worried about saying the wrong thing and will want to take cues from you.

If you want them to drop it, changing the subject helps. One way to change the subject is to talk about the reason you’re interacting with that person to begin with.

Eg: Say you’re at a conference.

  • Them: What does your necklace mean?
  • You: It’s kind of personal. It’s in memory of a friend who died recently. I’m trying to stay busy. I’m excited to be at this conference. What brings you here?

If that’s too much sharing, maybe you could say something like more vague like: “It’s a friendship necklace”, or “It’s to remember someone”, or “I’ve had that for a while”, “It’s in honor of someone”, and then follow it with an immediate subject change.

This sometimes takes a couple of repetitions of the subject change. Some people think that they’re supposed to find ways of getting you to talk about it, and some people are just nosey. If people are particularly persistent, you might need to say very bluntly that you don’t want to talk about it. (Some people might get annoyed at having their persistence rebuffed. If that happens, that’s their fault, not yours.)

Alternatively, what about making the necklace less visible? For instance, by wearing it under your clothes, or by putting your friend’s name in a locket instead of on the outside of a pendant? (I’m not assuming that this is a good idea — it may well not be; symbolism is complicated).

Women are not inherently safe

Real Social Skills

Sometimes people talk as though men are inherently dangerous, and imply that women are inherently safe.

Neither is true, because women are people, and people make choices.

Women can do anything that men can do. Including the bad things that men can do. Including abuse. Including violence. Women are people, and people can be dangerous.

It’s important to be able to acknowledge this. Women need to know that they have power, so that they can be careful how they use it.

People who have been hurt by women need to know that what happened to them matters, and that they are not alone.

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.

Sabotage disguised as acceptance

Real Social Skills

Acceptance is important. It’s one of the most crucial skills disabled people can develop. We have to learn to see ourselves as we are, and accurately

Acceptence is constantly, constantly undermined from a number of directions.

One of the most insidious things undermining acceptance is contact with people who speak in positive terms, but don’t believe in our abilities or agency even a little.

They will often call what they are doing acceptance, while at the same time doing everything in their power to convince us that disability means that we are fundamentally incapable of doing anything, that we shouldn’t try, and that we should just let them take over and run our lives.

This is fairly common in a certain kind of toxic parent community. (It’s also a common abuse dynamic in relationships between adults). Here’s part of the parent version:

Sometimes when parents say “My child is perfect the way she is,” what they really mean is “I don’t want my child to gain any skills that will enable her to separate from me, and I’m going to make sure she doesn’t.”

Some parents like this will give their disabled child anything but respect. For instance:

  • Some parents will give nonverbal children anything they point to
  • And will supply a lot of whatever their child expresses interest in
  • But no matter how old their child gets, they never stop treating them like a toddler. Even when they’re well into adulthood
  • And they don’t teach them about the world
  • Or talk to them about anything complex
  • Or try to find out what they think about anything more complicated than which objects they like
  • And won’t do anything to give them access to more complex communication
  • They will say that there’s no need for that, because their connection with their child is so deep that they understand everything they mean
  • That’s not true. Loving your child doesn’t make you a mindreader. Here’s a good post by a parent on the damage that approach does.
  • Even if parents infallibly knew what their child was thinking; kids need to be able to communicate with people other than their own parent
  • (Particularly since most children outlive their parents, and kids who can only communicate with their parents eventually end up unable to communicate with anyone)

Some parents will do anything for their disabled child — so long as it doesn’t run the risk of their child becoming more autonomous and less dependent on them. Eg:

  • Some parents prefer to carry disabled kids who are capable of learning how to walk
  • Some parents will put a lot of effort into making sure they’re always available to push their kid in an adaptive stroller, but adamantly refuse to get them a wheelchair they can propel themselves
  • Some parents will spend massive amounts of time putting their kids into complex outfits daily — and refuse to buy them any clothing that they can put on and take off independently

Some parents will allow their disabled child to do anything — except show consideration for others or develop reciprocal relationships not orchestrated by parent’s script. Eg:

  • They’ll allow their kid to boss people around at home, but they won’t let them go to any other kid’s house, ever, claiming that it’s somehow unsafe (even if their kid doesn’t have complex medical needs)
  • (Parents who do this often also do things like recruit children to come over and act like friends according to the parent’s script. For instance, by playing a game with their child and letting them win.)
  • Sometimes children who get overloaded hit people, are embarrassed, and want to apologize for hitting. Parents in this mindset tell them that it’s ok, that they couldn’t help it, and that they shouldn’t worry about it and definitely shouldn’t apologize.

Doing this kind of thing is not disability acceptance, even if the one doing it describes everything in flowery language. Sabotaging a child’s independence is not acceptance. Forcing a child into dependency is not acceptance. Destroying a child’s ability to engage in reciprocal relationships is not acceptance. Treating an adult as a child is not acceptance. Treating a disabled adult as a puppy or a plant is not love. That kind of stuff is just ableism.

People who say things like that aren’t accepting us as people. They’re saying that we’re not full people, and that they get spiritual satisfaction from having unpeople around.

We’re people. All the way down. Real acceptance is about seeing us as full human beings, acknowledging the impact disability has on us, and committing to finding ways to accommodate disability.

Short version: Treating disabled children and adults like puppies or toys is never ok, even if you call it acceptance and positivity.

Attention ≠ respect

Real Social Skills

Respect and attention get conflated a lot. They’re not actually the same thing.

When someone isn’t paying attention, it’s often assumed that they are either intentionally avoiding listening, or refusing to put any intentional effort into listening. And that, if they just respected the speaker more, they’d be paying attention.

Sometimes that’s true. And sometimes, the reason someone isn’t paying attention has nothing to do with respect. Often, it’s a neurological, psychological, or psychiatric issue. Or the result of pain or fatigue.

For instance, respecting a speaker and wanting to listen to them doesn’t cure ADHD. Cognitive attention problems caused by ADHD have to actually be accommodated and worked around. (For instance, taking medication, learning organization techniques, using captions to focus attention, collaborative note-taking, etc.)

Addressing values only helps when the problem is values. When the problem is disability; you have to address and accommodate disability in order to make progress. No amount of education in respectful attitudes will help if respect isn’t the issue.

Short version: Please stop assuming that failure to pay attention is always a sign of contempt. Sometimes it’s just a sign of an attention problem.

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.