Real Social Skills

AAC does not replace nonverbal communication

September 1, 2015June 21, 2021 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

August 31, 2015June 21, 2021 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

August 30, 2015June 10, 2021 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.

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.

Don’t be mean to fat disabled people

July 31, 2015June 10, 2021 Real Social Skills

Some disabled people are fat.

Some fat disabled people have mobility impairments, and need to use wheelchairs and scooters.

Some fat disabled people need to sit down a lot.

Some fat disabled people need to park in handicapped parking.

Some fat disabled people need to sit in the disabled seating on busses.

Some fat disabled people need to use the bathroom stall that has grab bars.

Some people act like fat people are somehow “not really disabled, just fat” as though the two are somehow mutually exclusive. They’re not. Fat is not a cure for disability. Fat disabled people are as disabled as thin disabled people. Fat people have every right to exist in public and use mobility aids and other adaptations.

Some people act like being mean to disabled fat people will somehow force them to stop being fat and disabled. It won’t. Being mean is not a cure. If you yell at a fat disabled person for needing to park close to the building, it won’t give them the ability to walk further safely. It will just mean that their day got worse because someone decided to be pointlessly cruel to them.

Short version: Fat disabled people exist, and have a legitimate need for access and accommodations. Being mean to fat disabled people for having access needs doesn’t cure their disability. It just makes the world a crueler place. Don’t be a jerk.