Tag: therapy

Open letter to sick kids and disabled kids.

Real Social Skills

Dear sick kids, dear disabled kids,

You may be facing a lot of adults who want to believe that your therapy is fun. You may feel differently. You may not be having fun. That’s ok. You’re not failing. You don’t owe it to anyone to enjoy the things that are happening to you.  

Even if you think the therapy is important, you might not think it’s fun. You don’t have to think that it’s fun. Your feelings are yours, and your feelings matter. No one has the right to tell you how to feel. No one has the right to insist that you think something is fun.

If you don’t think the therapy is a good idea, you have the right to have that opinion. Your parents or other adults may be able to decide what treatments you get. They don’t get to decide what you think, or how you feel. They can’t make things fun by loudly insisting that they are fun, or by making you smile.

It’s ok not to think that your breathing treatments are a fun game. Even if your mask is fish shaped. Even if you put frog stickers on it. Even if you had a lot of fun picking out the stickers. Even if you know that you need it in order to breathe properly. Push come to shove, it’s still a breathing treatment. You are under no obligation to enjoy it. If you’re not having fun, then it’s not fun. Even if people make you smile.

It’s ok if you don’t think a purple hospital gown means that the hospital is fun. Even if you love purple. Even if you put your favorite sparkly heart stickers on it.   Even if you want the operation or procedure you’re having, you don’t have to think that what you’re doing is fun. Even if the volunteers and play therapists are really nice. You’re still in the hospital, and it’s ok to feel however you feel about it.

It’s ok to dislike the tracing exercises your occupational therapist makes you do. Even if she says that they’re really fun and that she loved them when she was your age. It’s ok to think of it as work rather than fun. It’s also ok to think it’s a waste of your time. You are not her, and it’s not ok for her to tell you how to feel. She is not the boss of your feelings, or your likes and dislikes. You are under no obligation to have fun.

It’s ok to dislike singing silly songs with your speech therapist. Even if he tells you in an excited voice all about the great new conversation starter iPad app, it’s ok not to think it’s fun. Even if other kids seem to like it. Even if there are fun prizes for cooperating and smiling. Even if people frown when you don’t seem happy enough. You don’t have to think anything is fun. Your feelings are yours. You don’t owe it to him to like the activities you do, even if he expects it from you.

It’s ok to dislike the sensory diet an occupational therapist puts you on. You don’t have to like being brushed.You don’t have to like weights or weighted blankets.You don’t have to believe that squeezing a fidget toy is better than rocking, and you don’t have to think that chewing a tube makes the lighting and noise any less painful. Your feelings are real. If you like something, that matters, whether or not anyone else thinks it’s important. If something hurts, your pain is real whether or not anyone acknowledges it.

And so on. If you’re sick, or you’re disabled, or you’re both, there are probably a lot of things happening to you that aren’t happening to other kids. It’s ok to have whatever feelings you have about that, even if others desperately want to believe that you think all of it is really fun. It’s ok for you to think that something isn’t fun, even when adults speak in enthusiastic voices, put stickers on things, use fun toys, or whatever else.

It’s ok to think something is fun, and it’s ok to think it’s really not fun. It’s also ok to find something helpful without finding it fun. You have the right to like what you like, and dislike waht you dislike. Your feelings are your own, even if you have to smile to get people to leave you alone. 

It’s ok to like things, and it’s ok to dislike things. You are a real person, your feelings are yours, and your feelings matter. Illness, disability, and youth don’t make you any less real.

Open letter to disability professionals

Real Social Skills

Dear disability professionals,

I’m not sure why, but I keep encountering disability professionals who try to deny that disability exists, or to downplay its importance.

It’s so extreme that disability professionals often try to convince people with disabilities that we are just like everybody else. Even when our differences are the reason that you have a job.

We are not just like everyone else. We are alike in that we are all human, with the same basic needs and capacities that go along with humanity. We are also different, in that we have disabilities and most people do not.

Disability exists. Disability is important. People with disabilities are different from most people people in ways that matter. And we need those differences to be speakable.

Our bodies are different. We can’t make this go away by smiling, being brave, and trying hard.

The differences in our bodies matter. Most people can do things that are physically impossible for us. Most people can do some things easily that are excruciatingly difficult for us. The specifics of which things these are depend on the person and the disability. They always exist. That’s what disability means, it means having a different kind of body, a body that can’t do certain kinds of things easily or at all.

For everyone, with and without disabilities, understanding the limits of what our bodies can do is a key life skill. Everyone’s safety depends on understanding that they do not have wings, and that they can’t fly. My safety also depends on understanding that I have impaired vision, motor coordination, and executive functioning. Understanding these things means I have chosen not to drive, and that I have found adaptive strategies that enable me to cook safely.

From my perspective, the fact that I don’t concentrate hard and try to drive isn’t so different from the fact that I don’t flap my wings and try to fly. All I’m doing is acknowledging physical reality, and making choices that fit with my understanding of reality. Some of the physical limitations on what my body can do are the normal limits that apply to all human bodies. Other physical limitations come from my disability. They’re all just physical facts, they’re all just things I need to take into account when I make decisions. 

But as a person with a disability, I learned young that only some limitations are ok to talk about. If I say “I can’t fly”, no one contradicts me. If I say “I can’t catch”, people say “just keep trying”. Both are physically impossible for me. Trying hard will not make either possible. Neither will being brave, smiling, or believing in myself.

For some reason, many disability professionals seem to believe that honesty about our limitations will somehow destroy our self esteem. Actually, the opposite is the case. They want us to believe that if we just smile and keep trying, we can do anything that we put our minds to. But it’s a lie, and we get hurt badly when we believe it.

When professionals refuse to accept our limitations, they force us to attempt impossible tasks over and over. There is nothing positive about this experience. We try and fail, and we watch others our age succeed at the same tasks. If we believe that we can do whatever we put our minds to, then we feel like it’s our fault for not trying hard enough.

It hurts when people yell at us for failing, and it hurts when people plaster on smiles and urge us to smile and keep trying. “Come on, you can do it!” doesn’t sound like encouragement when you know that you will fail. It feels like being told that you’re somehow screwing up on purpose, and that if you would just decide to be a better person, you’d suddenly be about to do it. This kind of thing can go on for years, and it leaves scars. We often come to feel like we are unworthy people, and that there’s something deeply flawed about who we are. 

It’s very, very important that people with disabilities understand that we are disabled. We need to know that our bodies are different, and that some things that are possible for most other people aren’t possible for us. We can’t stop being disabled through an act of will. Our bodies limit us. That is not a moral failing. It’s just a fact of physical reality. And it needs to be speakable.

Our bodies and our disabilities are nothing to be ashamed of.  We don’t have to be different to be good enough. We don’t have to be nondisabled to do things that matter. We don’t have to do impossible things to be worthy of love and respect. We’re people, and who we are is ok.

And for professionals – please understand that when you refuse to acknowledge disability, you are teaching people with disabilities to be ashamed of themselves. This is probably not your intention, but it’s an inevitable consequence of making disability unspeakable.

It is much better to tell the truth. It is much better to support us in understanding who we really are, than to push us to believe in an impossible dream. I could dream of flying or playing baseball, but it wouldn’t get me anywhere. By living in the real world and working with the body I actually have, I can do things that matter. And so can all of your clients. There is no need for silence, evasion, or shame. Disability is important, and it’s much easier to live with when we can face it honestly.

Two kinds of mental health stigma

Real Social Skills

Content note: This post contains both criticism of and respect for the mental health system. If you find one or the other upsetting, this post will likely bother you.

There are two basic kinds of mental health stigma: dismissiveness, and dehumanization. Mental health conversations tend to have trouble acknowledging both at the same time — usually it’s at most one.

Dismissiveness stigma is when people deny the reality of mental illnesses. This plays out in a number of ways. One classic example of dismissiveness is “antidepressants are just a tool of capitalism to stop people from noticing that things are wrong”, or “Stop complaining. There are people with real problems”. There are many other examples.

Dehumanization stigma is when people deny the humanity of people with mental illnesses. A classic example of this is people who believe that the purpose of mental health treatment is to reveal the real person underneath — and that therefore, any objections they might make to the treatment “aren’t the real them talking”. There are many other examples of this as well.

Dismissiveness and dehumanization are both major problems. They’re both real, and they both do a lot of damage, even up to the point of costing people their lives.

People tend to perceive the mental health system very differently based on which kind of stigma looms largest for them. For a lot of people, it’s much easier to see one type than the other.

People who mostly experience dismissiveness often see the psych system this way:

  • No one took my problem seriously
  • I was scared to turn anywhere for help
  • Once I finally took the leap and went to therapy, things got so much better
  • Or, once I finally stared medication, things got so much better
  • (Or even: medication and therapy saved my life).
  • (Or even: I’m so glad people finally pushed me to get treatment; they were right.)
  • I wish people wouldn’t be so afraid. I wish everyone had access to this.
  • We need to fight stigma so that people can get the help they need.
  • (And to reform laws so that everyone has access).

People who mostly experience dehumanization often see it more like this:

  • When I entered the psych system, people treated me like I wasn’t a person
  • They forced me to take medication I didn’t want to take
  • The drugs didn’t work, and had harmful side effects
  • When I complained, they treated it as a symptom and raised the dose
  • They forced me to be in therapy I didn’t want to be in, and that made me worse
  • When I tried to advocate for myself, people treated it as a symptom, and no one took me seriously
  • Things only got better for me when I stopped therapy and/or medication and started a different approach
  • (Or even: stopping therapy and/or medication saved my life)
  • I wish people wouldn’t be so uncritical of a system that hurt me
  • I wish “unmedicated” wasn’t used as a slur implying that people who make the choices I make are all terrible people
  • We need to warn people, and reform the laws and systems that allow people to be treated this way

Some people’s experiences in the mental health system are positive in ways that nothing else is; some people’s experiences are horrifying. (And for a lot of people, things are more mixed). Neither type of experience is universally representative; both are real and common. Both matter, and need to be part of the conversation.

When most of someone’s experiences are with dehumanization, it can be hard to understand that dismissiveness is also a problem. Or why anyone would regard mental health care as positive, or lack of access to it as a problem. They may also find the terminology of “mental illness” repugnant, and have a strong preference for “crazy”. But it really is the case that for some people, mental healthcare including therapy and medication is a really good thing. And that for some people, the biggest problem with the system is difficulty accessing it (either because others discourage it, or because it’s too expensive.)

When most of someone’s experiences are with dismissiveness, it can be hard to understand that the dehumanization experiences are also real. (Particularly for people who were really afraid of mental health care and then had a transformative good experience with it.) It can be hard to understand why someone would prefer an apparently pejorative term like “crazy” over an apparently-netural term like “mental illness”. It can seem like people must be exaggerating, or that these things only happened in the past, or something like that. But dehumanization is still a problem now, and fighting treatment stigma will not address that problem.

Both dehumanization and dismissiveness are important barriers to people being treated as they ought to be. Because of both types of stigma, people lack access to help they vitally need. For some people, that help is treatment. For others, it’s access to resources like housing, respite, and assistance with food. For a lot of people, it’s both. People’s very real mental health struggles should not be dismissed; neither should the humanity and human rights of people with mental illnesses be denied.

Short version: There are two types of mental health stigma: dismissiveness, and dehumanization. Dismissiveness is when people deny the reality of your condition; dehumanization is when people think that your condition makes you less than human. Dismissiveness is often made better by the mental health system; dehumanization is often made worse. People whose experience is primarily in one category often don’t understand that the other category exists. Both matter, and both need to be part of the conversation.

An opinion is still an opinion if you put a question mark at the end

Real Social Skills

Therapists usually see themselves as facilitators rather than advice-givers or problem-solvers. They generally believe things like:

  • “We never tell people what to do”
  • “We create space to support them through figuring it out.”
  • “We raise questions.”
  • “We don’t give advice, we let them come up with solutions.”

Thing is: “raising questions” in practice amounts to expressing a lot of opinions. An opinion is still an opinion when it is phrased as a question. It’s *especially* still an opinion when it is phrased as a series of leading questions and pregnant pauses.

It matters what therapists of any kind believe about their clients; they can’t help very much without understanding what’s going on. That’s a reason why psychologists and other types of therapists spend years in school learning psychological theories and practical methods. One of the major ways in which therapists are sometimes able to help people is by having well-informed opinions and understanding things that others don’t.

It’s ok for therapists to have opinions — but they need to be well-informed, and they need to be able to modify them in response to new information. (Eg: Sometimes the patient knows something you don’t, sometimes there’s social or cultural context that changes the meaning, etc.)

I think that it is much easier to have a worthwhile opinion if you can admit to yourself and others that you have opinions and that your opinions affect other people.

Short version: Therapists tend to express their opinions to clients phrased as a series of questions. They think that this means they’re not expressing an opinion, but rather just asking and creating space for the client to think. It matters that this is not true. Therapists have opinions (and should have opinions), and being honest about that makes it much easier to learn new things and make your opinions needed. An opinion is still an opinion if you put a question mark at the end.

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.

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?

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.

You don’t have to earn support with a diagnosis

Real Social Skills

If you were hurt and you’re struggling to cope with the aftermath, that matters. It’s ok to be struggling. It’s ok to need support.

You don’t have to earn support with a diagnosis of something trauma related. You don’t even have to fit diagnostic criteria for a mental health condition to be worthy of support.

Getting hurt matters whether or not it results in PTSD or other diagnosable mental health conditions. There are a lot of different ways that people respond to trauma. In particular, not everyone who experiences abuse or other trauma develops PTSD. It’s ok to want support and to talk to other people whose struggles are similar to yours, whether or not your experience involves PTSD.

It’s also ok if the thing that hurt you wasn’t abuse, or if you aren’t sure whether you think it was abuse or not. It’s ok to need help and support even if it *wasn’t* abuse, or even if things are ambiguous, or even if what happened to you wasn’t anyone’s fault. Not all trauma is the result of abuse. Not all trauma is anyone’s fault. You don’t have to earn support by fitting a particular narrative. You don’t have to earn support by being ideologically or politically useful, either. You matter, it matters that you got hurt, and it’s ok to want help sorting things out.

It’s also ok to relate to and benefit from things that match your experiences partly, but not entirely. (Eg: it’s ok if something written about homophobic bullying helps you to deal with the medical care you experienced in the aftermath of a car crash; it’s ok if something written for people with intellectual disabilities helps you to cope with being the target of transphobic bullying. It’s also ok to use a type of therapy that was initially developed or is usually used to address a different problem than the one you have.)

All of this stuff can be hard to sort out. It’s ok to be struggling. It’s ok to seek help and support where you can find it. You matter, and your experiences matter.

Why I oppose ABA as a method of instruction

Real Social Skills

Content warning: This is a post about ABA.

The primary reason I think ABA is irredeemable: ABA uses behavior modification as a primary method of instruction. I think that is inherently demeaning, counterproductive and dangerous.

ABA therapy relies on continuous extrinsic motivation, which means conditioning the person it’s being done to to comply with a lot of things that they’re actively unwilling to do for several hours a week over and over. It means making them do things that make no sense to them, over and over for many hours a week. That’s dangerous. It’s especially dangerous for people with disabilities who have complex communication needs.

It’s dangerous to make a kid do things that make no sense to them over and over and over while relying on extrinsic reinforcement. That teaches them that people in positions of power can do whatever they want to them, and that they have no right to protest or understand or influence things. ABA leaves people subject to it very, very vulnerable to abuse. Extreme conditioned obedience is dangerous, and it’s the most persistently reinforced behavior in ABA therapy. It’s generalized to other environments, and does not go away once therapy ends.

There’s also a few secondary problems with ABA, which are deeply embedded in the culture of the BACB:

The goals of therapy are often bad in themselves. Eg:

  • Teaching a kid not to stim
  • getting them to say a few words by rote
  • insisting on eye contact
  • making a kid spend hours and hours on facial expression flash cards at the expense of age appropriate academics

(For some good discussion of the issue of bad goals, see “Would You Accept this Behavior Towards a Non-Autistic Child?“ by an SLP specializing in AAC.)

The reinforcers are often unethical even when the goals have merit.

  • ABA depends on extrinsic motivation in order to make people subject to it cooperate.
  • This used to routinely involve pain and food deprivation, and sometimes still does.
  • (Neither is actually prohibited by the ethical guidelines of the BACB, although they do mildly discourage it).

Aversives have fallen somewhat out of favor in recent years, partly due to public outcry over them. That does not solve the problem, and a lot of common reinforcers are not much of an improvement.

ABA therapists talk about using things like bubbles, tickles and praise – but those things are not, in the long term, reliably sufficient to get anyone to comply with many hours a week of boring therapy.

What does work is taking everything a child (or adult) cares about, and making their access to it contingent on compliance in therapy. That’s an awful thing to do to someone, and it can seriously impair their ability to care about anything or communicate about anything. If you know that showing interest in something means it will be taken away, it’s going to be hard to show interest.

I think that’s inherent to this kind of therapy – ultimately, you have to either get intrinsic motivation or use really invasive extrinsic motivation. But even if that problem was solvable, I’d still be opposed to ABA as an educational method, because of the primary problem that behavior motivation is not defensible as a primary educational approach. Educational approaches should be about teaching, not about behavior modification.