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.

Short version of the post on safety

Real Social Skills

There’s more to safety than making people feel safe. 

If your whole approach to other people’s safety is based on causing them to *feel* safe, you run the risk of forgetting to make sure that things actually *are* safe. 

If someone’s whole approach to your safety is about managing your feelings, it’s probably a good idea to be cautious about trusting them.

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.

“Blaming others”

Real Social Skills

“Take responsibility for your life and stop blaming others” is the kind of phrase that is sometimes really important and also sometimes dangerously misleading.

It’s important to take responsible for things that are within your control. Taking responsibility is about accurately assessing situations, and deciding what to do about them within the options you have.

Unfortunately, when people say “stop blaming others and take responsibility for your life,” they’re not always talking about assessing things accurately. Sometimes what they’re doing is trying to convince you to assume that everything you’re experiencing is always your fault; and that you could always make everything better if you just made better choices.

There are *some* situations in which it’s actually the case *in that particular situation* that blaming others is holding someone back. In those situations, it often *is* possible to fix things by making better choices. It’s important to recognize those situations when they arise. It’s not a remotely good idea to assume that all situations are like that.

Sometimes things are your fault. Sometimes they’re someone else’s fault. Sometimes it’s a mixture of both. In order to take responsibility for your actions, it’s important to realistically assess what’s going on. Sometimes that means noticing that other people are causing problems.

In order to be responsible, it’s important to evaluate what’s actually going on. Assuming that everything is always your fault won’t help.

Responding to desexualization without hurting others

Real Social Skills

Content note: This post is about ableism and desexualization of adults with disabilities. It is highly likely to be triggering to some people who have experienced degrading desexualization, as well as to some people who have been sexually assaulted or otherwise had people violate their sexual boundaries.

A reader asked:

As an autistic person I often feel desexualised, and I don’t like it but I feel sorta uncomfortable stating it for some reason? How should I like, deal with this and enforce my sexuality without making people uncomfortable?

realsocialskills said:

This gets really complicated.

Being desexualized is awful, and it’s also really hard to talk about without sounding like you feel entitled to sexual or romantic attention from other people. Especially when you’re talking to people who’ve been on the receiving end of a lot of intrusive sexual attention and who aren’t aware that desexualization also happens and is also a problem.

Another complication is that many adults really are asexual or aromantic. That’s an ok way to be, and it’s important to acknowledge that those people exist and aren’t broken. Objecting to desexualization does not mean objecting to asexual people.

People who desexualize adults with disabilities in these ways aren’t recognizing asexual adulthood; they’re denying disabled adulthood and expressing it in sexual terms. (And this denial of adulthood expressed in sexual terms also hurts asexual adults).

I think that desexualization is when people refuse to acknowledge or respect some basic things:

  • That you’ve reached adulthood or you are a teenager
  • That you’re as likely as anyone else your age to experience romantic and sexual attraction
  • That if you are experiencing sexual and/or romantic attraction, it’s as significant and important as attraction anyone else experiences
  • If you want to, it’s completely appropriate for you to act on your sexual and romantic feelings (either with yourself or consenting other people)
  • You have the same right to physical, sexual, and emotional boundaries as anyone else

People who desexualize you might treat you inappropriately in group dynamics, eg:

  • By assuming that you will never have a crush on anyone in your friend group
  • By assuming that you don’t date for real and will always be available to go to couple’s events with someone who is caught without a partner at the last minute
  • By saying things like “I hate men/women/whoever. You’re so lucky you don’t have to deal with dating them.“
  • Or like “It’s so great to talk to you about this stuff. I’m so tired of how everyone else is making the group awkward with their dating drama.”
  • Or venting to you about how hard it is for them to find a partner without considering that you might share this frustration, and that it’s probably harder for you than it is for them
  • Or making jokes about how you’re their ~boyfriend~/~girlfriend~, ignoring the possibility that you might want to be someone’s boyfriend or girlfriend and that you might, in fact, be attracted to them.

People who desexualize you also sometimes don’t observe appropriate sexual boundaries, eg:

  • Assuming that rules of modesty don’t apply to you
  • Undressing in front of you (in a community in which it would normally be considered inappropriate for someone of their age and gender to undress in from of someone of your age and gender)
  • Touching you in ways that are considered inappropriately intimate in your social circles for people who are not romantically or sexually involved
  • Adopting suggestive poses or being inappropriately close (eg: by having their breasts or crotch way too close to your face)
  • (The rules of acceptable nudity, physical contact, and closeness are different in different cultures, and that’s fine. What’s not fine is having established rules of modesty/boundaries but ignoring them when interacting with disabled people)

It’s ok to be angry about this kind of thing, and it’s ok to insist that people knock it off and treat you with more respect. It’s ok to expect people to respect your maturity, your romantic and sexual capacity, and your physical and emotional boundaries.

For instance, it’s ok to say “I’m a grown man; you shouldn’t be changing in front of me,” or “I’m not your girlfriend; stop touching me like that,” or “I don’t want to go to that event with you unless it’s a real date,” or “I don’t like it when you make jokes about dating me,” or “I get crushes too you know.” This will probably make some people uncomfortable; and that’s ok. You don’t have to do all of the emotional labor of making social interactions comfortable; it’s ok to have boundaries even when other people don’t like them. It’s also ok to insist that people acknowledge and respect your age even if they’d rather see you as a child.

It’s ok to be angry about people treating you badly in areas related to sexuality, and it’s ok to insist that they knock it off. It’s ok to be upset when you’re single and don’t want to be, and it’s ok to be upset about the role that ableism is playing in making it hard to find someone.

It’s also important to be careful that this doesn’t turn into anger at people for having sexual boundaries of their own. It can easy for some people to become confused about this when start realizing that it’s ok to have sexual feelings, and not ok that others treat you as though your disability means your sexuality doesn’t count. If you’ve been treated as outside of legitimate sexuality for your whole life, you likely have missed opportunities to learn about consent and appropriate sexual and romantic interactions. That’s not your fault; it is your responsibility to address. Being the object of discrimination does not give you a free pass to violate other people’s boundaries, even if you’re not doing it on purpose.

It’s important to keep in mind that no one is obligated to date you, sleep with you, allow you to touch them, consider dating you, justify their lack of interest in dating you, or anything else like that. (And that it’s not ok to hit on people if you’re in a position of power over them).

You’re human, so it’s likely that you’re having some less-than-ideal feelings about this stuff some of the time. You might feel jealous, or upset, or even angry at people who haven’t really done anything wrong. (Because they’re dating visibly and you’re lonely, or because you asked them out and they said no, or other things like that which can hurt to see but aren’t their fault.) It’s ok if you’re feeling that way; you don’t have to have superhuman control of your feelings to treat people well. What’s important is that you don’t feed it, and that you don’t act on it.

In particular, it’s important not to cultivate offense when people you’re interested in dating aren’t interested in you. That leads nowhere good. (eg: I got an ask about how to stand up to a person who was using disability as an excuse to grope people a while back.)

Rejection sucks, and it sucks more when you’re already really lonely, and it sucks even more when you know that ableism is probably a major factor in why some people you’re attracted to aren’t interested. It can be really tempting when things are that hard to take offense. It’s important to stay aware that people who reject you aren’t wronging you, and to find constructive ways to deal with it that don’t involve contempt for the people you’re attracted to. (In particular, stay away from pick up artist communities. Adopting that worldview makes it much harder to learn about good consent and have respectful relationships).

It’s also important to keep in mind that it’s ok for you to be sexual and to express interest in dating people. (Even if you encounter people who are profoundly uncomfortable with the idea of disabled people having and acting on sexual and romantic feelings. Those people are wrong.) Your sexuality is not ever the problem. (It’s possible sometimes that things you’re doing might be a problem, but having a sexuality is never a problem in itself.)

In particular – if you ask someone out or hit on them and they say no, that doesn’t mean that you did something wrong. It just means that they aren’t interested. Asking people who turn out not to be interested is ok; asking is how you find out. You don’t have to be a mindreader in order for it to be ok to ask someone out.

All of this can be really, really hard to navigate. I hope some of this helped.

Short version: Disabled adults and teenagers are often treated like children. People often express this in sexualized terms by assuming that disabled adults are all incapable of legitimate sexual expression. It’s awful to be on the receiving end of that. It’s also hard to talk about or object to effectively. Scroll up for more thoughts on how to navigate this.

Being seen as “manipulative”

Real Social Skills

A reader asked:

Hey! I was wondering what you think about adults thinking of neuroatypical kids as “manipulative,” “charming,” etc. surely not everyone who says that is wrong, but it can’t be a coincidence that it’s usually said about neuroatypical kids?

realsocialskills said:

I think that people jump to that conclusion really quickly with disabled kids. “Manipulative” can kind of become a catch-all category for ways to delegitimize a kid’s interests, opinions, and self-advocacy.

Manipulative often translates as meaning things like:

  • “She resists doing what I tell her to do, and tries to distract me so I’ll let her do something else”
  • (without reference to what it is they’re telling her to do, why she doesn’t want to do it, and what she does want to do)
  • (Sometimes this means that she is 12 years old, and she’s resisting doing a preschool curriculum worksheet for the zillionth time)

Or this:

  • “He keeps trying to say things I don’t want to hear, and to convince me that what he’s saying is important even though I keep telling him it isn’t.”
  • (Without reference to what he’s saying, why it matters to him, or why it’s so unreasonable for them to listen to him about it)
  • (Sometimes this means that he’s in pain, and trying hard to tell them and get it to stop, but they don’t believe him or don’t care if he’s hurting.)

Or this:

  • “Other people sometimes believe her about things when I tell them she’s lying”, or
  • “Other people ask for her side of the story even after I’ve told them mine.”
  • (And expecting you to believe the adult automatically that it’s unreasonable to ever believe anything the kid says)
  • (Sometimes this means that they’re hitting her when no one who cares is looking, and they’re afraid that she might eventually convince someone with power that they’re doing something wrong.)

Charming can also mean “other people like this person more than I do, and more than I think they deserve”.

That said, being manipulative in a bad way is a real thing, and people with disabilities are just as capable of being manipulative as anyone else is.

Being manipulative in the bad sense involves doing things like:

  • Having highly developed skill at getting other people to like them and want their approval
  • Using that skill to ride roughshod over people’s boundaries
  • And/or get them to do things that they don’t want to do or shouldn’t do
  • Convincing people they want to manipulate that they are friends, and not actually reciprocating friendship in a meaningful way

Sometimes people with disabilities are manipulative. More often, they are manipulated. (For instance, adults often have nondisabled kids volunteer to pretend to be the friends of disabled kids. This usually results in the disabled kids being manipulated in really degrading ways and misled about what friendship is.)

Short version: Being manipulative is a real thing, but disabled kids are accused of it far more often than they are guilty of it. When a disabled kid is called manipulative, it often means that someone is objecting to their entirely justified attempts to get control over their life. (Which would be seen as normal and acceptable in a nondisabled person their age.)

It’s ok to watch the same clip over and over

Real Social Skills

I’ve seen a lot of parents express concern about their kid watching the same clips over and over on YouTube, or watching shows they’ve seen before over and over, or similar.

I think that a lot of people are under the impression that watching the same videos repeatedly is an inherently meaningless activity. It’s not.

Here are some purposes repeated video watching can serve:

Getting oriented:

  • Sometimes the world is very confusing
  • Going back to something familiar can make the world less confusing
  • It can also remind you of feelings that it is possible to have and ways that it is possible to express them
  • For some people, all of this is really important

Focusing or averting overload:

  • Noise can be really overloading or distracting for some people
  • So can silence
  • So can new things
  • Having a familiar video on can be a really effective way for some people to avert overload and/or stay focused
  • This is meaningful and important. It’s important to be able to be comfortable and think clearly.

Noticing new things

  • The video is the same every time, but the person watching it isn’t
  • When you watch it over and over, you see new things
  • It can be conceptual things like coming to interpret the story in a new way
  • Or sensory things like noticing sounds and colors that you never noticed before
  • This kind of repetition and examination is meaningful, and can be a great joy

Receptive and expressive language:

  • People who communicate by repeating words and phrases can get more words and phrases, and more meaning out of the phrases they have, by watching the same video over and over
  • Watching the same video over and over can also be really good for receptive language
  • It can be practice listening to things
  • The meaning stays the same, and watching it over and over can be a way, over time, come to understand the words in it better
  • This is also true of body language – in a video, you can watch the body language over and over and come to understand it
  • There’s also far less pressure to already understand. In interactions with people, you upset them if you don’t get it. Videos don’t need you to understand them – you can try as many times as you need to and take as much time as you need without anything bad happening.

Short version: It’s not cause for concern if a kid watches the same videos over and over. Adults do it too, and it serves a purpose. Watching the same things over and over can be valuable and important.