More About Therapy

D. asked:
Thank you for your insight and perspective. I agree that sensationalizing a person’s behavior is dehumanizing, and refuse to use “You Tube” videos and the like in any trainings I conduct. I would like to hear more about your experiences, perspectives, and suggestions about the therapies and treatment provided to people who are neurodivergent.

I’ve chosen to respond here so that my answers are available to everyone who’s interested. It’s more spoon-efficient to educate this way, as I’m sure you’re aware.

First off I’d like to say thank you for coming to the Autistic community to inform your training. There seems to be a typo in your blog name and I can’t find your profile or what you do, but I assume it’s some kind of therapist training or teacher education thing, feel free to correct me if I’m wrong about that.

Let’s start with my experiences of therapy.

I was never diagnosed as a child, I got labelled “shy” and “eccentric”. I was never put through any therapy or targeted learning to help me cope with my brain working differently. I’m sure plenty of other autistic will have also experienced feeling different but not knowing why. Bullying features into these stories in a big way. We’re not easily tolerated by our peers, and it can be incredibly frustrating to experience social rejection and not know why. That said, there’s a strong consensus within the Autistic community that any therapy that focuses on making students “indistinguishable from peers”, eliminating aspects of themselves that aren’t “normal”, is a bad therapy. Other bloggers have written on the topic of normalising therapies:

but I’ll give a (potentially quite long) bullet list of why we generally object to any therapy designed to make us “less autistic”.

  • Autism affects every aspect of us. It influences how we think, how we perceive, how we feel, how we interact with the world and how the world interacts with us. It’s impossible to take it away, the differences will always be there, whether we’re declared “cured” or not.
  • Once you’ve accepted that you’re never going to be able to change the way we think and perceive, you’ve then got to accept that any therapy designed to make us act less autistic is simply teaching us to hide who we are for the comfort of the neurotypical people around us.
  • This hiding presents the autistic person with the same set of problems that they would have had they not been diagnosed, essentially, normalising therapy is equivalent to no therapy at all, with a side-order of wasted time and effort and potentially extreme distress during the course of the therapy.
    • Burnout is a risk – the autistic person will eventually just get tired of trying to fit in. I’ve had this, it generally manifests as a misdiagnosis of depression and anxiety.
    • Low self-esteem – being taught that who you are is wrong and needs to be hidden (even if those words are never explicitly used) can permanently knock your self esteem.
    • Loss of support – normalised autistic people are considered to be “fixed”, not autistic any more, and therefore not entitled to educational and living supports that they will still need, because you can’t cure autism.
    • Blame – the popular attitude is that if you’ve been “cured” of autism (or never diagnosed) then any behaviour that results in difficulties is your own fault and is something you’re choosing to do out of defiance, naughtiness or attention-seeking.

So you can see that normalising therapy is pretty useless. If it works, it causes problems as if the person was never treated, except for the time and energy wasted on the treatment (and potential PTSD depending on the treatment method), or it doesn’t work and the autistic person feels like a failure.

I’d like to talk about methods here. ABA therapy is bad. The ideas behind it are bad. Lovaas asserted that the autistic person has no right to behave in the way that comes naturally to them. That’s saying that a person has no right to be themselves because the majority finds it unsettling.

Then there are the methods. You don’t have to look far to find examples of electric shocks being used to modify behaviour, vinegar or lemon juice being used as taste-aversives, kids being put in restraints, excluded from activities. Even ABA that doesn’t use aversives holds things that the autistic person cares about most to ransom to force behaviours.

I’ll say what everyone else is saying. There is no benefit to acting neurotypical for the sake of it. Check out what Neurodivergent K says about conditioned eye contact. There’s no benefit to discouraging flapping, or stimming, or vocalisations. It might make a person more acceptable to neurotypical people, but that could be achieved by working on removing the stigma, rather than by forcing a child through intensive therapy to remove their coping mechanisms.

Other teaching methods (ESDM, I’m looking at you) are so prescriptive that they prevent the autistic person from learning in a way that suits them, playing in a way that suits them. Everything must be done the neurotypical way or not at all. It prescribes teaching in a bare room with just a table and chairs. That’s not a teaching room, that’s a prison cell.

So what should therapy attempt to achieve?

Communication – communication is vital. The first rule is that everybody communicates. Not everyone speaks, not everyone types, not everyone points to symbols on a card, but everyone has behaviours and they can be used to communicate. A good therapy should focus on finding the method of communication that best suits the autistic person. This method might change over time, and that’s fine, but the important thing is that they have access to a mode of communication. It’s also very important that communication or attempts to communicate are honoured by therapists. One of the worst aspects of a lot of therapies is that they teach compliance with the will of the therapist, and they teach that the autistic person has no right to refuse. If the autistic person says no, respect that, give them a break, let them do something else, because the last thing we want is to train a wave of young people in how to be open to victimisation.

Self Advocacy – Communication is the first step towards self advocacy. Being able to communicate our needs and have them honoured is empowering. It gives us the tools to start improving our world for the better. This reduces frustration (which, by the way, is the cause of a lot of aggressive behaviour, increased stimming, self-injurious behaviour…), and helps develop self-sufficiency. Not that it can magically make people able to do things that they couldn’t before, but it allows them to communicate that they need help with things, that they would rather try this thing without help, it leaves room for experimentation and growth. Empowerment is the opposite of infantilisation.

Social and life skills – Social skills are important for functioning in society, but 40 hours a week of forced eye contact is teaching all of the wrong lessons. There’s a lot of hidden curriculum that we find hard to navigate. Think of it like being dyslexic but for social conventions. We can’t just read them. What neurotypicals do to figure out that there’s this rule looks like a kind of mind reading to us. Drilling us on interactions, as Unstrange Mind mentioned, is like teaching a dog to shake hands. We’ll do the things but not understand why, and quite often we’ll end up doing things in the wrong context because we haven’t properly understood the rule. This one’s a really tricky one, but I’ve found the best way of learning the hidden curriculum is just to talk about it. Stories (appropriate for developmental age), for example:

Josie went to the swimming baths, she went up to the information desk and looked for a notice board with prices on. She couldn’t find one. The receptionist was typing on her keyboard.
“Excuse me, how much is it for an hour of swimming?”
The receptionist told her the price.
“Thank you.” said Josie, and paid for an hour…

Read a story together that contains the social interaction you want to work on, then discuss it. What did Josie do that was polite? She excused herself before interrupting the receptionist. She said thank you at the end of the interaction.

I promise you, accurately learning social rules is much more useful than being able to look at someone’s eyes. I can always excuse myself for failing at eye contact. I can always say “I’m sorry, I have autism and that makes eye contact uncomfortable, but I am listening.”, and that’s generally well accepted. It’s much harder to say “I’m sorry, I have no idea what the unspoken social conventions are for this interaction.” and have that taken well.

Teach useful age-appropriate skills. How to introduce yourself. How to politely interrupt. How people expect you to show that you’re listening and value their contribution in a conversation. How to do transactions like buying things in shops. How to use a debit or credit card. If you’ve got communication sorted, then ask if there’s anything that the student struggles with or is confused about. Maybe their friend got angry when they said something that was accidentally hurtful and they would like the interaction explained to them.

Stimming – In many places, stimming is not an acceptable behaviour. Autistic adults are working hard to change perceptions of stimming. We’re educating in our friendship circles and in our workplaces, we’re proudly wearing our stim-jewelry, we’re blogging about it. Stimming is an important tool for helping our brains cope with things. It helps to regulate boredom, discomfort, anxiety. It helps us absorb information when we’re learning. Taking away stimming leaves us dysregulated and exhausted. If a particular stim is harmful, work with the autistic person to replace the stim with another one that’s equally satisfying but not harmful. It helps to talk about why the stim feels good, what feels similar, what the student likes and doesn’t like. For example, I can’t always have my chew necklace when I go out to meet customers, so instead I take a sports bottle of water and sip it. This does, unfortunately, result in needing more bathroom breaks.

Embrace stimming as the useful and powerful tool that it is. Let the student lead any redirection.

In short, all therapy should aim to empower the student. Look at every learning target and exercise and ask “How does the student benefit from this?” Put yourself in their shoes. If it were you having to learn these things, why would you want to? If the answer is simply “to be indistinguishable from my peers”, then perhaps that target isn’t as vital as you think.

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