Tag: autism

Executive dysfunction and teachers

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.

feelings and therapy

Real Social Skills

Anonymous said:

When I have therapy or counselling, I notice that if I deal with real emotions in a way that is good for me, that I have to drop the neurotypical act of behaviours that show I am doing polite and kind listening.

I’m still listening but just not showing it in the way people prefer. When I do this, I notice that they get very hard and uncaring, even though I do it to make counselling work for me so I can tune into myself instead of acting. Do I give up?

realsocialskills said:

I’m not sure what you mean by “Do I give up?”.

If you’re asking about dealing with real emotions – I don’t think that you should give up trying to find a way to deal with your real emotions. I think that everyone can learn to deal with feelings, both feelings they’re having and feelings that other people are having. I think it’s really great that you’re working on that, and I definitely don’t think that you should give up.

Which leads to the question: What should you do about your current therapy situation? I don’t know the answer to that. I think you’re the best judge of that. Here are some considerations that might be worth thinking about:

I think that you have a lot of options. Some I see (there are probably others):

  • Trying to negotiate with your current therapy to make therapy work better for you
  • Trying to find another therapist
  • Staying with this therapist, but not expecting much out of it (or giving it time)
  • Trying a different kind of therapy
  • Deciding not to do therapy for now

Regarding working things out with your current therapist:

  • If you’re with this therapist voluntarily and could quit if you want to, trying to negotiate might be a good option
  • It might be worth telling them that you need to be able to drop attentiveness behaviors to be able to process
  • And that you want to process and deal with these feelings in a real way, and that you can’t both look attentive and do that
  • Some therapists are receptive to that kind of feedback; some aren’t
  • Therapists are human, and sometimes they misread things. Sometimes if you point it out, it helps.
  • Some therapists are not receptive to that kind of feedback, and might get really annoyed or manipulative
  • If it turns out that yours isn’t interested in meeting your need to drop affect in order to process feelings, it’s likely that they are not the right therapist for you
  • And that’s information worth having.
  • (If you’re stuck with this therapist no matter what, this might be riskier. I can’t tell you how to evaluate the risks in your particular situation, but I think it’s important to consider whether there might be some)

Not all therapists are the same:

  • It’s fairly common for people to need to look unusual in order to be able to engage with emotions in therapy
  • Working through emotions and psychological issues is hard work. Sometimes it means you can’t manage looking attentive
  • This isn’t a secret. A significant percentage of therapists expect that many clients won’t look like they’re listening when they’re processing.
  • Some therapists have the skills to handle this constructively; some don’t.
  • If you can choose who your therapist is, it might be worth trying to find a therapist who already understands this

Not all kinds of therapy are the same:

  • Not all therapy is about feelings.
  • Some kinds of therapy are about behavior, or learning specific skills.
  • If what you want from therapy is to learn to tune into yourself and deal with your feelings constructively, it’s important that you do a kind of therapy that helps with that
  • For instance, psychodynamic therapy or art therapy might work well for that. CBT probably won’t, since CBT is about behavior more than it’s about processing.
  • Just, generally speaking, it’s important to make sure that you and your therapist agree on what the goals are, and that the type of therapy they do makes sense for your goals
  • It might be worth learning more about types of therapy, and thinking through whether you’re in the kind you want to be in, or whether you might rather try a different kind

More generally regarding therapy:

There are a lot of therapy evangelists who talk about therapy like it’s the end all and be all of making progress in your life. They talk like therapy is risk free, universally helpful. They also talk like, if you’re not in therapy, you’re doomed to stagnation and that you’re essentially giving up on yourself. Real therapy is not like that. Real therapy is a set of people with a set of tools, which may or may not be helpful in given circumstances.

Real therapy is a mixed bag. Not everyone has the same experiences with it. For instance:

  • Therapy can be game-changing.
  • A lot of people find that therapy allows them to make progress dealing with problems they’ve felt completely trapped by for years.
  • Others find that therapy gives them skills or insights that dramatically improve their lives.
  • Others find therapy completely unhelpful.
  • Some people finds that it helps some, but not that much.
  • Some people are people are harmed in therapy.
  • Some people struggle to find the right therapist, but have really good experiences with therapy once they find someone who can work well with them.
  • And there are any number of other experiences.

I think there is no universal answer to “Should I work on this problem in therapy?”. I that’s always a complex personal decision. It depends on what you want and what you have access to and what you find works best for you. The answers to these questions are personal, and you’re the best judge of them.

And just, generally speaking: if therapy is not working for you, that’s a problem that you should take seriously. If you don’t feel respected, that’s a problem that’s a problem you should take seriously. Therapy is supposed to be helpful. If you’re in therapy that isn’t helping you, it means that something isn’t right and that it’s probably worth changing something.

Short version: Therapy means a lot of different things, and people have a lot of different experiences with therapy. There are different kinds of therapy and different kinds of therapists. Sometimes therapy is a good idea and sometimes it isn’t. It’s a personal decision and sometimes it’s complicated. Whether or not therapy is your approach right now, don’t give up on yourself. You can learn and you can make progress.

AAC does not replace nonverbal communication

Real Social Skills

This is a continuation of a series on why I think it’s a mistake to ignore nonverbal communication in an attempt to force someone to use AAC. (The short version: it’s disrespectful, it undermines someone’s ability to communicate, and it prevents people from developing a valuable skill.)

One reason nonverbal communication is important for AAC users is that you always have your body with you. That is not necessarily the case for AAC devices.

AAC best practices say that someone should have them available constantly. In practice, people don’t. This is for several reasons. One is that it’s not practical to take a device to some places (for instance, most people are not willing to take a high tech device to the beach, and low tech devices are a lot more limiting.) Another reason is that sometimes people forget, or vastly underestimate how close a device needs to be in order to be immediately available. Or any number of reasons, some innocent and some horrifying, and many a mixture of both.

Also, people take devices away from AAC users. They shouldn’t, but they do. Sometimes it’s accidental; sometimes it’s on purpose. It’s never ok, but people do it a lot. If you’re teaching a nonverbal child to communicate, you need to keep this in mind when you’re considering what to teach them. You can’t assume that people will always treat them appropriately, and you can’t assume that they will always have their device. If they are capable of communicating with their body, it is an important skill for them.

Whatever else happens, someone always has their body with them. People can do a lot more if they can use their body to communicate. Communicating in body language can make it possible to communicate in a swimming pool. It can make it possible to communicate with dirty hands. It can make it possible for someone to indicate that their device isn’t within reach and that they need it. It can make it possible to communicate about pain in medical situations. It can make it possible to communicate when someone else doesn’t want you to, and has taken your device away. It can make friendship possible that otherwise wouldn’t be. And any number of other things, all of which are important.

And in order to be able to communicate with body language, people need opportunities to practice and develop this skill. If you ignore someone’s nonverbal communication to encourage AAC use, you’re making it harder for them to develop comprehensible body language. That’s not a good idea, because comprehensible body language is important. People won’t always have access to their device. They will always have their body.

Short version: Nonverbal communication is important for nonverbal people, but parents are often encouraged to pretend not to understand it in order to encourage AAC use. This makes it harder for people to develop body language that others can understand. One reason this is a problem is that people don’t always have access to their devices, but people *do* always have access to their bodies. Nonverbal people should have support in developing nonverbal communication, because it is an important skill.

AAC is not a cure

Real Social Skills

This is a continuation of a series on why I think it’s important to listen to the nonverbal communication of nonverbal people. Often, parents are encouraged to not listen or to pretend not to understand, so that kids will be forced to learn AAC and use words. I think this is a mistake, for any number of reasons. The first post focused on the general importance of listening.

Another problem with this advice is that ignoring nonverbal communication discourages people from developing their nonverbal communication skills. That’s a bad idea, because nonverbal communication is a very useful skill for nonverbal people. It should be encouraged, not discouraged.

It’s valuable for several different reasons (and I assume, for many reasons I don’t know about.)

One is that AAC is not a cure, and it doesn’t make nonspeaking people just like people who can talk. Nonverbal people who have communication devices are still nonverbal. Currently existing AAC devices can’t do everything that speech can do. For instance:

  • AAC devices mostly can’t do tone. Voices usually can.
  • AAC devices can’t go everywhere. Voices usually can.
  • AAC devices can be taken away much, much more easily than voices can.
  • AAC is usually slow. That makes interrupting hard-to-impossible. Voices can usually be used to interrupt.
  • AAC is usually fairly quiet. Voices can usually yell.
  • Symbol-based devices generally don’t have anywhere close to sufficient vocabulary for emotional or physical intimacy. Voices do.
  • Many AAC devices give others a lot of control over what someone can say. Voices are usually more flexible.

For a lot of these things, body language and movement can be a more effective way of communicating than using a speech device. For instance, putting up a hand to say “stop!” is a lot more likely to be understood quickly than using an AAC device to say the same thing.

Similarly, most symbol sets developed that touch on sexuality at all assume the main reason people need sexual vocabulary is to be able to report abuse. Most of them don’t have robust symbols for discussing sexuality and sexual desire — and most of them don’t have any symbols for emotional intimacy at all. Body language can communicate things that a system designed this way can’t.

Another reason AAC is not like speech is that people who are nonspeaking, are nonspeaking for reasons. And AAC does not make those reasons go away.

Some people are nonspeaking because words are unnatural, painful, and cognitively draining. People like that deserve to be able to communicate in ways that are natural and comfortable. And it’s important for people close to them to listen to their natural communication. Ignoring someone’s most natural communication it is a rejection of their personhood. It’s important not to do that to people.

It’s also dangerous, because someone who finds AAC cognitively difficult and draining is likely not going to be able to use it all the time. For some people, this can be especially true when it’s particularly important to communicate, or when they’re sick. If you’re responsible for someone and you only know how to listen when they use AAC, that’s dangerous. If there’s another way they communicate, it’s important to develop your ability to understand it. (Or, if you can’t, to find someone who can.)

Similarly, if someone has apraxia or other difficulties controlling their body well enough to point, their physical ability to use AAC is likely to vary. And it’s still important to listen to them when they aren’t able to use it in the ways they sometimes can.

Short version: Access to AAC is important. It’s not the only thing that’s important, and it’s not a cure. Nonverbal people who use AAC are still nonverbal. Body language and using one’s body to communicate are also important skills. (Not everyone can learn to do this. For people who can, it’s valuable.) It is not a good idea to discourage AAC users from using body language to communicate.

In defense of nonverbal communication

Real Social Skills

Lately, I’ve been seeing a lot of posts giving parents of nonverbal kids the advice “pretend not to understand your child so that they will be forced to use AAC and communicate in words”.

I think this is a mistake.

I think that if you want to teach someone to communicate, it has to be built on a foundation of listening to them. And that means listening to all of their communication, not just communication that happens in words.

I also think that all of someone’s communication methods are important, and that they all need to be respected. There isn’t one true method of communication. They all matter.

Communicating through body language is useful for all people. People who can talk are allowed to communicate through body language, and actively encouraged to develop the skill of doing so. It’s expected that, when I smile, point to things, frown, or whatever, that people will listen to what I’m communicating. Nonspeaking people deserve the same respect.

People say “communication shouldn’t wait for speech”. I agree with that. And I think it shouldn’t wait for words either. Because words may never come. If you wait for someone to reliably use words to listen to them, you may end up never listening to them. And everyone deserves to be heard.

And even if they will eventually use words and sentences, the things they’re saying *now* still matter. And listening to them is still important.

Presuming competence shouldn’t mean assuming that with the right support, people will eventually base most of their communication on words. Presuming competence should mean assuming that, with the right support, people will choose the means of communication that work best for them. Which may be speech. Or a voice output communication device. Or sign. Or body language. Or pointing to a letter board. Or speech. Or any number of other things. Or any number of combinations of things.

Short version: Everyone deserves to be listened to. If you want to support someone in learning to communicate, it has to be built on a foundation of listening to them — in whatever form their communication takes. Ignoring one form of communication to force them to learn a different form is not respectful, and probably won’t help.

Resources other than ABA?

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:

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?

We are people

Real Social Skills

When I see a picture of someone who looks like me, it’s usually illustrating a tragic or demeaning story.

Sometimes it’s a picture of a child, illustrating a story about how difficult life is for parents of autistic children. Or a story about how the child’s favorite thing got turned into therapy. With depressing bullying statistics.

Sometimes it’s a picture of an adult, illustrating a story about how difficult life is for parents of autistic children once their kids reach adulthood. Or a bleak story about unemployment statistics. Sometimes it’s a story about a special business or sheltered workshop for autistics that the parent is proud to say their child is involved with. With depressing unemployment statistics.

Sometimes it’s a story about how an autistic person has a special talent. Maybe they’re an artist. The story is always about how mysterious and beautifully tragic it is that autism sometimes gives people special abilities along with significant impairments. The story will not take them seriously as an artist. It will be a human interest story about autism, and no art experts will be quoted — but the headline will probably say “autism does not define him.”

This gets corrosive. It can make the world seem bleak and hopeless. It can be hard to remember that this isn’t an accurate way to describe us. That we are, in fact, more than that.

In real life, we’re people, and we do things. We do things besides be miserable or be inspiring. We have thoughts and attributes that are not convenient to the tragic plots of newspaper articles. We’re people. We do real things. And we matter.

I am not a tragic story; I am not an illustration. I am a real person. And so are you.

Appearing to enjoy behavior modificiation is not meaningful

Real Social Skills

One common response to criticism of ABA is to claim that people subjected to it enjoy it:

  • “My child loves his therapist and asks to go to sessions!”
  • “All of my clients smile and have fun!”
  • “My ABA is play based!”

What people forget is that affect is a set of behaviors, and that behavior modification methods work as well on affective behaviors as they do on anything else:

  • You can reinforce people to look happy
  • You can reinforce people to praise therapy
  • It doesn’t have to be an explicit part of the behavior plan to happen
  • And it can keep happening even after you fade direct prompts or direct intentional reinforcers

ABA programs give the therapist massive power over the person. That power in itself can cause people to look happy, through a more subtle reinforcement mechanism than takes place on a behavior plan:

  • If you have power over someone in the way that behavior therapists do, they’re going to be highly motivated to please you
  • If they figure out that you want to believe that they are happy, they are very likely to act like they are
  • If you treat them better when they display the affect you want or praise you, they’re likely to act happy.
  • It doesn’t mean they’re actually happy
  • Or that what you’re doing is good for them

(Also, affect often is an explicit part of someone’s behavior plan. It is not at all uncommon for ABA programs to involve actively ignoring distress and withholding attention and rewards until someone looks happy. It is not at all uncommon for ABA programs to involve teaching people to smile, to hug, or to otherwise do things that would out-of-context indicate happiness, enjoyment, or affection. It doesn’t have the same meaning if it’s prompted or trained.)

Also, programs based on positive reinforcement involving controlling someone’s access to stuff they care about:

  • The first step in a program based on positive reinforcement is to find out what someone most enjoys or cares about
  • (This is called a preference assessment or a reinforcement inventory. Here’s an example.)
  • And then making sure they have no access (or limited access) to those things outside of sessions or other situations in which someone is actively reinforcing them to do something
  • Of course if someone’s only access to everything important to them happens in sessions they will ask for sessions
  • That doesn’t mean they like the fact that someone has that level of power over them
  • (No one likes being manipulated that way.)
  • That doesn’t mean they like the things that the therapist makes them do
  • That doesn’t mean the power dynamic is harmless
  • That doesn’t mean ABA is a good approach to teaching

People who can’t say no, can’t say yes meaningfully. Looking happy isn’t meaningful if you’re rewarded for affecting happiness and punished for looking visibly distressed. Making the best of a bad situation isn’t consent.

thoughts on dating while autistic

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.

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.