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!
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:
- 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.
- For some people, the Rapid Prompting Method works really well. (Although I wouldn’t recommend it as a first resort; other communication support options are less invasive and allow for freer communication, when they work. But sometimes RPM works when other things don’t.).
- 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.
- 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).
- 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
- 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).
- 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?