disability – Page 5 – Real Social Skills

Meaningful echolalia

October 10, 2015June 21, 2021 Real Social Skills

Some people communicate mostly in memorized phrases or allusions to stories and events.

It’s actually pretty normal to communicate in phrases and allusions. I think most people communicate that way at least some of the time. For instance, a lot of people make Shakespeare references in situations that have little or nothing to do with literature. A lot of prose and interpersonal communication happens that way.

This is interpreted very differently for some people than others. People without disabilities who mostly communicate in literal language are taken much more seriously when they make allusions and quotes.

When a nondisabled person says “The lady doth protest too much, methinks”, it’s assumed that they’re communicating and that what they say is meaningful. They are usually understood. This is the case even if there are no ladies present and they’re obviously not talking about a lady.

Similarly, when a nondisabled person says something like “A horse! a horse! my kingdom for a horse!”, this is understood as meaning something even if they obviously do not have a kingdom and are known to hate horses.

When someone with a disability communicates in exactly the same way, their communication is often written off as meaningless. It’s often seen as sensory seeking, or stimming, or a persversation, and having no communicative content whatsoever. This kind of communication is often ignored, and also often seen as a problem behavior to be extinguished by a behavior plan.

This is in part because there’s a widespread belief that autistic people are all hyper-literal and only understand literal language. That’s true of *some* autistic people. But there are also autistic people who have the opposite problem. There are people who find it nearly impossible to use literal language to communicate, but who can readily make references and use literary phrases. (This is true for other kinds of cognitive disabilities as well; it’s not unique to autism.)

People who can only communicate in references deserve to have their communication taken seriously. So do people who find references much easier than literal languages. Everyone else is allowed to use references to communicate; people with disabilities have the right to do so as well.

Here’s an example of a situation in which communication is often misinterpreted. Imagine a girl named Sarah:

Sarah doesn’t say very many words reliably. She can usually say a few things like mom, food, want, home, and SpongeBob.
Sarah watches SpongeBob a lot
She wants you and other people in her life to watch it with her
She says a lot of phrases from SpongeBob
(Eg: “I’m ready!”, “One eternity later”, “SpongeBob, you and I both know you’re just using me as a distraction so you don’t have to write your essay”, “Why is it whenever I’m having fun it’s wrong?”, “I’m ugly and I’m proud!”)
Sometimes, the assumption is made that her repetitive phrases are preventing her from developing standard language
Or they might think that TV is preventing her from developing standard language and that her access to TV is limited
Or they might think that she’s perseverating on SpongeBob in a way that’s preventing learning
When maybe what’s going on is that SpongeBob is *teaching* her language and communicative concepts, and she’s trying to use them to communicate
If so, she should probably watch more TV, not less
And it’s really important for people in her life to listen to her
And understand the references she’s making and what they mean to her
(Watching the shows with her is probably an important part of that; showing her other shows might be too)
If you want someone to communicate, you have to listen to them, even when their communication is unusual

A lot of this post about listening to people whose speech is unusual applies in this situation too.

Short version: Repeated phrases are often meaningful. Some people with disabilities communicate mostly in memorized phrases and references and allusions to stories and other things. Nondisabled people are taken seriously when they communicate this way. Disabled people who communicate in references should be taken just as seriously. (Even when they don’t communicate in literal language very often or at all).

Thoughts on symbol support and picture support

October 9, 2015June 9, 2021 Real Social Skills

People with certain kinds of disabilities often need more than words in order to be able to communicate. One thing that can be helpful is the use of symbols or pictures.

Using symbols can expand and support someone’s expressive vocabulary. (For instance, picture symbols on a communication device can enable someone to use words they couldn’t use by typing or speaking).

Symbols can also expand and support someone’s receptive vocabulary. For instance, symbols can be used to illustrate materials, or to explain something to someone. They can also be used in things like powerpoint presentations in various ways.

Symbol support can do a lot of other things that make communication more possible for people with a wide range of disabilities. It’s not just about literacy; literacy-related things are just the easiest to explain.

Something I’ve been realizing matters is that everyone who uses symbols to communicate is a symbol support user. Even people who normally communicate in words; even people who only use symbols to communicate when they are talking to people with disabilities or listening to people with disabilities.

It’s important to remember that communication in symbols is happening on both sides of the interaction.

If someone is communicating with you by showing you symbols, then you are using symbols for receptive communication.

If you are using symbols to explain something to someone, then you are using symbols for expressive communication.

It’s important to keep this in mind.

If you’re using symbols, the symbols are part of the communication. Even if every symbol is attached to one word and only one word. The symbols don’t just tell people what the words are. They also have content, and it’s important to pay attention to what you’re saying with the symbols. They might not mean the same thing to the person you’re talking to that they mean to you. Particularly if they understand picture-concepts more readily than they understand word-concepts.

For example:

Sometimes people might select symbols on communication devices based on what the symbols mean rather than what the words they’re associated with them mean:

If someone is putting together phrases that don’t make obvious sense to you, they might mean something by it
It might *not* be stimming, random exploration, or that kind of thing
It might be intentional communication based on what the pictures mean to them
I think it is important to take that possibility seriously (even for someone who also speaks, or also uses words)
And *especially* important to take seriously if they’re indicating with body language that they want you to look at the screen)
(This is also true if someone is using PECS symbols in a way that doesn’t appear to make literal sense. It might be because the pictures mean something different to them than they mean to you)

Similarly:

If you’re using symbols to explain something to someone who needs symbols, the symbols matter
It’s not always enough to just pick words, then pick symbols that go with those words one-by-one
The content of the symbols can matter beyond literal word-by-word meaning
The way the symbols combine can also matter. (ie: the fact that a sentence makes sense in words and each symbol corresponds well with a word does *not* necessarily mean that the symbol-sentance makes sense)
The symbols also might not mean the same thing to the person you’re communicating with that they mean to you
If someone finds symbols easier to understand than words, they may derive more meaning from the symbols and your tone of voice and body language than they do from the words themselves
It’s important to pay attention to what you’re communicating with the symbols you choose as well as the words that you choose

Some considerations for symbol use:

Consistency between symbols matters. Symbols combine in ways that make more sense when there’s an underlying logic to the symbol system.
Symbols should not be childish or cutesy, even for young children.
Because nobody, not even young children, wants to be forced to communicate in cute ways.
And some really important topics (eg: abuse, boundaries, sexuality) are decidedly un-cute. People with disabilities need and deserve respectful communication about things that aren’t cute or shiny-happy.
Symbols should be comprehensible at a variety of sizes. (Eg: overly complex symbols don’t work well for small buttons on a communication device).
Symbols should be respectful, especially when they are symbols of people doing or thinking or being things (eg: protestors should look powerful rather than cute; adults should look like adults; symbols for “choice” should either be abstract or be age-neutral)
Symbols should be accurate. (eg: the symbol for anger should not be a smiling person; the symbol for diabetes should not be the same as the symbol for “no sugar”; wheelchair users should have the kind of wheelchairs that individuals own than hospital wheelchairs; the symbol for intellectual disability should not be the same as the symbol for the special olympics)
In all of these ways and other ways I’m not sure how to explain yet, I think that SymbolStix is the best existing symbol set.

Short version: Symbols can be really helpful for supporting communication and comprehension. If you’re using symbols to help someone else communicate or understand, it’s important to keep in mind that the symbols and the words both matter. Pay attention to what you’re communicating in symbols and what they’re communicating in symbols. Sometimes there are things going on beyond the literal meanings of the words that someone decided to associate with the symbols.

Executive dysfunction and teachers

September 13, 2015June 9, 2021 Real Social Skills

we-aint-borntypical asked: Sorry if this is late, but how do I tell my teachers about my executive dysfunction and how it affects my ability to do assignments?

realsocialskills said:

I think the most important thing you can do is accept that the problem is real, and that it’s ok to need help.

It can be hard to accept that executive dysfunction is real. It can be very tempting to feel like if we just try harder or wait long enough, it will somehow work out. And some percentage of the time that does work — which can make it seems like it will *always* work if we try hard enough. But it doesn’t work that way, and expecting it to causes a lot of problems.

Executive dysfunction means that sometimes there are insurmountable barriers to doing things completely independently. Sometimes this can happen with things that our culture says are easy and that you may not have heard of anyone having trouble with. It can be hard to come to terms with that. It gets easier with practice.

More directly about managing relationships with teachers, I’ve found two things helpful: I try to err heavily on the side of asking for help as soon as I’m feeling stuck, and I also try to select instructors based on understanding and/or cognitive compatibility.

If you’re facing an assignment and can’t figure out how to make progress on it, it’s good to err on the side of asking for help immediately. This can be hard to do, especially if you feel ashamed or like you don’t have a good reason. It’s actually ok though, and it gets easier with practice.

It’s normal to need help sometimes, even if the reasons you need it are unusual. All teachers have students who need help. Good teachers understand this and consider needing help normal. (Not all teachers are good, but many are). A lot of teachers care about helping their students, and it’s usually a lot easier for them to do that if you ask sooner rather than later. (It also saves you the time you’d waste trying to do something impossible through sheer force of will.)

If you can, it helps to explain in concrete terms what you are having trouble with, and what you think would help. (If you don’t know what would help, the concrete request might be “Can we meet to talk about this assignment?”). I think that it usually helps to err on the side of talking about concrete problems rather than abstract concepts like executive dysfunction.

For instance, I think “I’m having trouble getting started on this assignment. Could you help me narrow down my topic?” is usually more effective than “Executive dysfunction makes this assignment hard for me, what should I do?”. That said, if the latter is the only way you can ask for help in a particular situation, don’t wait until you know a better way. It’s ok to ask for help imperfectly; it’s ok to need help even if you’re not sure what help you need.

Not all teachers will be good at helping you. Some won’t be willing, some some won’t know how. Some will be inconsistent. But a good percentage of teachers *are* skilled at helping. If you have a choice about who your teachers are, it’s good to err on the side of picking teachers who are good at helping.

Also, some teachers are going to be inherently more cognitively compatible with you than others. Different teachers do instruction and assessment differently. If you have a choice, it can be good to err on the side of taking classes with teachers who give assignments that are more reliably possible for you.

Aside from attributes of teachers — asking for help effectively is a set of skills. One of those skills is the emotional skill of feeling ok about the fact that you need help. Another is assessing what’s going on and figuring out what your needs are. Another is expressing it to teachers in a way that they can understand and act on readily. And there are other skills I’m not sure how to explain. No one is born knowing how to do these things, and they all get easier with practice.

Short version: Executive dysfunction makes school complicated. Taking classes with teachers who teach in a way that makes cognitive sense to you can help, when you have a choice. It can be hard to ask for help, and hard to feel ok about needing help. That’s a set of skills, and it gets a lot easier with practice.

Don’t stop people from using their abilities

August 27, 2015June 10, 2021 Real Social Skills

If developing a skill, even shakily, means someone will lose their accommodations, that makes it impossible for someone to use that skill. That’s a problem.

For instance, people who can walk often still need wheelchairs. Denying wheelchairs (or wheelchair accessible transportation, or other accessible things) to people who can walk doesn’t make a wheelchair any less necessary. It just prevents people who can walk a little from ever doing so in public. (And prevents some people from developing that ability at all.)

Similarly, a lot of AAC users can talk, or can talk some of the time. For many people, the best form of communication is a mixture of speech and a communication device. Often, when people speak, they are treated as though they are faking their need for AAC. Or that they’d be able to use speech as their sole means of communication if they tried harder. That doesn’t make AAC any less necessary. It doesn’t make speech any more possible. All it does is make it impossible for someone to use both speech and AAC, which deprives them of communication options they’d otherwise benefit from.

Similarly, a lot of people who can read visually also need screen readers from time to time. If seeing someone read standard print means that you won’t let them use electronic formats anymore, that doesn’t give them new abilities. All it does is stop them from reading.

Wheelchair users have the right to do what they want with their legs and AAC users have the right to do what they want with their voices. People have the right to read in a combination of ways that are possible for them. There are numerous other examples. Those rights matter, and they’re often ignored.

Short version: People with disabilities who use equipment or adaptive strategies are often prevented from doing things in the standard ways too. They’re expected to either do things in the approved disabled way or the approved normal way. This is wrong. People should be able to do things in the way that works best for them. (Which is often a mixture of different ways, some of which are used by nondisabled people as well.)

Resources other than ABA?

August 15, 2015June 21, 2021 Real Social Skills

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

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

realsocialskills said:

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

Some thoughts about therapy specifically:

What is the purpose of the therapy?

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

Some reasons that therapy can be needed:

Communication:

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

Literacy:

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

Movement:

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

Emotional issues:

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

Psychiatry:

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

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

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

Also, consider getting psychotherapy for yourself:

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

Likewise psychiatric support:

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

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

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

More generally:

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

Don’t do this alone:

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

Other support issues:

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

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

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

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

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

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

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

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

Give him the right words for feelings:

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

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

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

A reason your kids need you to talk to them about their disability

August 1, 2015June 10, 2021 Real Social Skills

Sometimes parents avoid talking to disabled kids about disability because they don’t want to make them feel different.

The thing is, it’s not actually possible to prevent your child from noticing that they are different. They will notice that they aren’t just like all the other kids. Partly because it’s obvious. Kids compare themselves to other kids, and to adults that they observe. Disability is as noticeable as the fact that some people are fat, female, tall, short, black, white, or whatever else. Kids notice differences. They will notice this difference too. And that’s ok.

They will notice that you are willing to talk about some differences, but not others. If you refuse to talk about disability, they will still know that they are different. They will just learn that you consider the difference unspeakable.

They will also notice what other people think about them and their disability.

People will stare at your child and make disparaging remarks. People will call them the r-word, and every other disability slur. They will say “special” and “special needs” with a sneer. They will make fun of your child for not being able to do things. They will say, or imply, that they would be able to do them if they’d just try harder.

You can stop some people from doing this to your child (and you should), but you can’t stop them from ever encountering it. They will probably encounter it every day. They will know that they are different from other people, and our culture will teach them incredibly destructive things about what that means.

You can’t stop your child from hearing what our culture thinks of disability — and if you don’t talk about disability yourself, your child will believe that you agree with it.

If you don’t talk to your child about their disability, the only words they will have for themselves are slurs they hear other people call them. You can give them better words, and better information.

If you don’t talk to your child about their disability, they will end up with a lot of misinformation about what their difference means. If you talk to them, you can tell them the truth.

Short version: Refusing to talk to kids about disability doesn’t protect them from feeling different. It just prevents them from getting accurate information about what their disability is and what their difference means. When kids who don’t know the truth about their disability face hate, they have little-to-no protection against internalizing it.

You don’t have to be perfect at self care to deserve medical treatment

July 11, 2015June 21, 2021 Real Social Skills

Disabilities and chronic conditions often require difficult and time-consuming self care.

For instance:

People who are paralyzed have to pay very close attention to their skin to avoid dangerous pressure sores
People with CF have to do a lot of breathing treatments
A lot of people have to keep track of a very complicated medication schedule
Or any number of other things

A lot of medical complications are preventable with the right self care. But no one manages perfect self care, because self care is hard, and people are human and nobody is perfect.

Making a mistake that leads to an injury that was theoretically preventable sometimes pisses off doctors. It’s also something that people sometimes feel very ashamed of. This can be a deterrent to getting medical care.

It’s not right that it’s this way. You don’t have to be perfect to deserve medical care. Sometimes you make mistakes and need treatment. That’s part of the human condition, and it doesn’t mean you’re somehow less deserving.

Nondisabled people injure themselves doing careless things all the time. People who fall off bikes in a moment of carelessness and break bones get to have medical treatment without facing that kind of hate. So do people who burn themselves cooking. Doctors are capable of understanding that people make mistakes and get hurt — and people with disabilities deserve this understanding just as much as anyone else.

Everyone who needs medical care deserves it. Including people who make mistakes. Including people with disabilities who make mistakes. You don’t have to be perfect at self care to deserve treatment.

Rigorous attention to self care is important. So is medical support for needs that arise, including as the result of mistakes.

thoughts on dating while autistic

July 10, 2015June 21, 2021 Real Social Skills

A reader asked:

Hi! I’m autistic, and I’ve never dated anyone, although I have been asked out before. Truthfully, I’m terrified of dating or being in a relationship, because I’m almost 18 and I’ve never even kissed anyone before, and I’m embarrassed!

I’m a pretty attractive girl and very good at hiding my autism, so people are interested in me at first, until I totally mess up flirting because of my social awkwardness.

Can you tell me what dating/relationships are like, so I know what to expect/how to act? thanks!

realsocialskills said:

I can’t answer this directly because dating and relationships are different for everyone. They aren’t about scripts; they’re about building something with another person that works for both of you. I don’t know what they will be like for you. That is something that you will figure out as you get more experience.

But I can tell you some related things:

It’s ok to be embarrassed. Figuring out dating is embarrassing for most people. That doesn’t mean that you can’t date or have relationships. It just means that you will be embarrassed sometimes.

Flirting is at least sort of embarrassing even when it’s working. Figuring out whether or not someone is interested in you is at least somewhat embarrassing for almost everyone. Flirting is a way to make the process of figuring it out more pleasant than embarrassing.

Flirting effectively is a bit like learning to play the violin — just like initial attempts to play the violin sound terrible, initial attempts to learn how to flirt tend to be acutely embarrassing. That’s ok. It doesn’t mean something is wrong with you. It just means that there’s a learning curve.

Also — it’s not unusual to be 17 and not have kissed anyone yet. Sometimes the way people talk about teenagers can make it sound like everyone is dating and having sex, but it’s not true. Some people are, and some people aren’t. Both are ok. A lot of people your age haven’t kissed anyone. And the people who are kissing others also get embarrassed and unsure of themselves.

(It would also be ok even if it was unusual. It’s ok if some things are harder or take longer for you than they do for most people.)

Many of the skills involved in romantic relationships are the same skills involved in friendship. And one of the most important skills involved in friendship is figuring out how to tell whether you like someone, and whether they like you.

Figuring out whether you like someone can be hard for a lot of autistic people. Among other reasons, a lot of us are taught that we have to be friends with anyone who will tolerate our company. That’s not how dating works and it’s not how friendship works either.

If you don’t like someone, you shouldn’t date them. If you don’t like spending time with someone, you shouldn’t date them. If you’re hoping that they will change dramatically, you shouldn’t date them. It’s only a good idea to date someone if you like them and enjoy their company as they are now. You can’t build a good relationship with an imaginary person.

Similarly, it’s important to only date people who like you. People who are hoping that you will change, or who want you to act nonautistic all the time, are not people who like you.

You can’t become nonautistic to please people who find autism repellant, and you aren’t going to be able to hide autism from them forever. It always becomes noticeable sooner or later, because autism affects you and your experiences and impairments matter. You are who you are, and your disability is part of that. And that’s ok, because disabled people can date, and we can do it well.

The most important thing to know about dating and relationships is that, in good relationships, the people involved like and respect each other. Respecting and liking yourself is an important part of learning to build a mutually respectful relationship. Liking yourself helps you to like others; and to tell whether others like you. Respecting yourself helps you to learn to treat others respectfully; and to understand whether or not the ways others are treating you are ok.

From the way you phrased your ask, I think that you might be having a lot of trouble feeling ok about yourself as an autistic person. I think that it would help you a lot to work on understanding that it’s ok to be autistic, and that you can be a fabulous autistic human being.

It sounds to me that you think that you have to pass as non-autistic to be dateable. You don’t have to do that. Autism doesn’t prevent kissing and it doesn’t prevent love.

A lot of autistic people struggle to feel worthy of love and friendship. A lot of us feel repulsive a lot of the time. We’re often made to feel that our thoughts, feelings, interests, and body language are disgusting flaws. But they are not. We’re ok. Being autistic is ok.

We are beautiful. The way we look and the way we move and the way we think is beautiful. Autistic beauty is real, and there are people in the world who appreciate it.

We are often taught that, unless we learn to pretend that we’re normal, no one will ever like us. (That’s the basic message of the Social Thinking curriculum, for instance). We’re also often taught that we’re not allowed to make mistakes. A lot of us feel like every time we make a social mistake, it’s showing that we’re deeply flawed and hopelessly unworthy.

That makes dating really hard, because everyone makes acutely embarrassing social mistakes as they learn how to date. (And often even after they have a lot of experience.). It sounds to me like you might feel like you have to earn the right to date by never making any embarrassing mistakes. You don’t. If that was the standard, no one would ever be able to date. It’s ok to be fallible and embarrassed and unsure of things. You’re ok.

There are people who will appreciate your beauty. There are people who will find you attractive. There are people who will love you.

You can learn how to date, and you can do it as yourself.