Quiet Hands Don’t Make My Day Better

April 11, 2019 10:26 AM

Invisible Abuse: ABA and the things only autistic people can see C.L. Lynch compassionately breaks down how seemingly innocent play based ABA (Applied Behavioral Analysis) is inherently traumatic for autistic children as it ignores needs, suppresses communication, and discourages expression of emotions.

“That last reason was the most comforting to me. I thought that because I cared about the kids’ well-being, because I had a strong desire to help them, everything I did must therefore be in their best interest. In my mind, it gave me a special immunity to making mistakes.” Why I left ABA: the year I spent working in ABA is my single greatest regret.

Is ABA Really “Dog Training for Children”? A Professional Dog Trainer Weighs In: “[T]he vast majority of autistic people when polled (typically 97%) oppose ABA including and especially those who went through it as children. [...] Modern dog training takes its codes of practice from the recommendations of many animal welfare bodies, and it prioritizes the needs and emotional well being of the dogs.

I don’t believe ABA focuses on the emotional needs of autistic children. Nor do I believe that it incorporates recommendations from child psychologists on basic needs such as unconditional love, the need to play, or the right to say no.

The emotional needs of children are too often left entirely out of discussions about autism. This should be shocking to anyone who understands children, behaviour, or how emotions and relationships impact us.”

Finally, a truly massive and in depth article with links out to many resources by #ActuallyAutistic authors: I Abused Children and so do You: A Response to an ABA Apologist.

posted by Anonymous (30 comments total)

Thank you for this. I don't know if I have any allistic friends with autistic children, but I do have a fair number of autistic adult friends. I'll definitely be sharing this!

I know we often talk about how the Internet Was a Mistake, but I think it's done a wealth of good in helping autistic folks self-advocate and disseminate knowledge about their community.
posted by explosion at 10:46 AM on April 11, 2019 [10 favorites]

My daughter was given a provisional diagnosis of autism at one point - the doctor dropped hints that it would make accessing funding for certain things easier - and I've idly wondered whether I should look into ABA for her, given that it's the gold standard and all.

After reading this, I'm thankful that I went with the vaguer advice to pay attention to where she's at, what she's feeling, and what she's almost able to do. I'm not a perfect parent by any means, and I probably could've been convinced that this is the greatest thing ever if more doctors and therapists had put pressure on me. Sounds like she probably would've ended up much more compliant, and much less joyful.
posted by clawsoon at 10:50 AM on April 11, 2019 [4 favorites]

Having endured a lot of "social skills" therapy that even at 8 felt like they were trying to make me more compliant and easier for adults to deal with rather than improving my ability to interact with others, this was painfully relatable:

The grocery store isn’t any less noisy or bright or overwhelming. And the child obviously still finds it difficult to go in. Instead, she has learned to keep her feelings to herself, to try and focus on pleasing her family, and bottle up her stress inside until she can’t take it any more.

That’s a healthy thing to teach a child, right?

With time she may become excellent at this. She may be able to go to the store, put items in the cart, and go home without a meltdown.

But the meltdown WILL come.

It will come over something minor, some silly thing that seems like nothing and pushes her over the edge where she was already teetering. And they will wonder where it came from. They’ll talk about how unpredictable her meltdowns can be.

It isn’t unpredictable to us.

We can see it coming. We can see that her autism hasn’t been treated to improve her life so much as to improve her family’s life. And while that is important too, wouldn’t it be better to find a solution that works for everyone?

Usually I assume my education and life would have turned out better had anyone mentioned Asperger's back then, but given articles like this one, maybe not.
posted by Flannery Culp at 10:58 AM on April 11, 2019 [34 favorites]

Reading Karen Pryor as part of trying to understand dog training, I was really struck by her disinterest in the ethics of reinforcement training. It's not abusive to use r+ methods to control or permanently reshape other beings' behavior. It's unethical to reshape or control behavior selfishly - zoos keeping animals for conservation and training them not to injure caretakers is one thing, SeaWorld training intelligent mammals to perform for human entertainment is quite another. And it's wildly unethical to treat human children like wild animals with no capacity for meaningful consent, and with which we have almost no ability to communicate.

A shit ton of ABA is very much "jump through hoops to get fish because it amuses me," not benefiting the trainee. Even dog agility training is better - it's a good source intellectual enrichment. Human children benefit from intellectual enrichment, but this is a terrible source of it.
posted by bagel at 11:06 AM on April 11, 2019 [11 favorites]

I remember how difficult it was as a parent to decide whether to subject my son to this 10-15 years ago. On the one hand, it looked terribly wrong; on the other, it was the "gold standard" of care, and was I being neglectful/ setting him up for a more difficult life by not doing it? I'm glad that I skipped it and focused on problem solving and accommodation instead, though it made my own life very hard and lonely for a long time.
posted by metasarah at 11:08 AM on April 11, 2019 [21 favorites]

Just watching the videos from the first link, wow, that is A LOT of touching, and none of the rewards look remotely rewarding to the child they are working with. I wrote a big long comment about animal training but most of it was covered incredibly well in the third link.
posted by muddgirl at 11:25 AM on April 11, 2019 [4 favorites]

none of the rewards look remotely rewarding to the child they are working with

Well, the doll does, but then they take it away again. Like, the kid is clearly wanting the reward to be "now you get to play with your doll and not deal with this", but the doll is snatched within 30 seconds to move on to the next thing.
posted by corb at 11:37 AM on April 11, 2019 [6 favorites]

From reading the comments in the first article, it seems like a lot of therapists are using "ABA" to basically describe whatever self-developed program they want to use, so that insurance pays for it. That's a huge problem and this is a recipe for hidden abusers along the lines of Larry Nassar using "scientific techniques" as a cover story.
posted by muddgirl at 11:38 AM on April 11, 2019 [17 favorites]

wow. this is profound.

I want to post a lot of words about this. I don't have time to post a lot of words about this right now. But this is maybe the clearest explanation of what it means to respect alterity, and to respect others for their alterity rather than despite their alterity, that I've ever read.

or I guess I should say our alterity, rather than their alterity, cause we've all got a lot of alterity going on.
posted by Reclusive Novelist Thomas Pynchon at 11:43 AM on April 11, 2019 [5 favorites]

Here in Ontario, many parents of autistic children are panicking and protesting because ABA funding is going to be cut and made more flexible (i.e. no longer ABA-only) by the new Conservative government. Some of the criticism is painting opposition to ABA as anti-scientific, like climate change denial or anti-vax. All of the criticism is painting the government as heartless.

I'd like to hope that this heartlessness will lead to better outcomes by accident, like when freeway funding runs out and minority neighbourhoods don't get bulldozed, but I do worry that some parents, convinced that ABA is their only hope, will put ever more energy into ABA advocacy.
posted by clawsoon at 11:45 AM on April 11, 2019 [4 favorites]

clawsoon, I think that's a symptom of many low-trust communities: any changes from above (government, etc) is treated with suspicion, even if it's likely to have a positive outcome. This is evident in Toronto with the TTC's Wheel-Trans (which, I discover from friends who use it is utterly crap: you have to schedule 5 days in advance by telephone, and then the night before you get a call [typically too late for attendant care to be around to help with] saying that: a} you got your time slot [sometimes happens]; b} you couldn't get transit that day at all [sometimes happens]; or c} your time slot has been moved ± 3 hours around your preferred option [usually happens]. So it's utterly useless for making appointments or relatively spontaneous decisions): the TTC is frantically trying to augment it with a new Family of Services. FoS is intended to get more mobile users off end-to-end Wheel-Trans buses and on to more regular transit. This would free up Wheel-Trans vehicles for people who really can't use anything else. But many users apparently fear that this change means that Wheel-Trans will go away, and people are doubling down on the Wheel-Trans bookings. This makes it effectively unusable for everyone, with the side-effect of FoS being underused and potentially facing shutdown.

Having seen post-ABA training for parents closely connected to me, I agree that it appears to come from a very Victorian "children should be seen and not heard" approach. One kid I know can be very contact-averse, and grabbing his hands when he's over stimulated is as a kettle of boiling water poured over him.
posted by scruss at 12:15 PM on April 11, 2019 [3 favorites]

I don't know if I should link to articles that I strongly disagree with and give advice that I believe is abusive. I was googling "compliance training" because I was reading so many conflicting things in the comments of the first article. So many therapists were saying "This doesn't sound like the ABA *I* learned." But the articles I read on compliance training and on 3-step prompting sounds exactly like what C.L. Lynch describes. A parent or therapist tells a child to do something, and if they don't do it, no matter the reason why, they are physically "guided" (aka forced) to do it. It doesn't care at all about the child's emotional state, physical ability, or receptiveness to learning. If you tell a child who is in this program to eat their peas, and they don't want to because they have a stomach ache or are full, tough shit, their non-compliance *must not* be rewarded under any circumstances.
posted by muddgirl at 1:35 PM on April 11, 2019 [5 favorites]

They don’t think about how this person will learn to stand up for themselves or advocate for their needs when they were systematically trained in preschool never to disagree, speak up, or disobey.

Speaking as someone who is not neurotypical this hit me where I live. Do you want your child to spend their lifetime around other people knowing that no one will care for or respect their needs and that it’s pointless to try to make friends because people will never like you for who you are? Then sure teach them that they are wrong and weird unless they act like other people and ignore their requests for help unless they’re phrased in a way convenient for you.
posted by winna at 2:00 PM on April 11, 2019 [27 favorites]

I'm not diagnosed as on the spectrum, though as I raise my son and family tell stories about me growing up, it's becoming more apparent I'm probably one of the Lost Girls from the 80's. But on my family blog I have always presented myself as an allistic mom of an autistic kid.and I'm very vocal about being anti-ABA because I took the time to read accounts by autistic adults.

You cannot imagine the pushback I get not just in comments but in the family groups I belong to. And every time I talk about seeking respite or therapy for my son, his psychologist immediately jumps in with suggestions of ABA groups. The last time I explained how I was against ABA after talking to autistic adults, and she went on and on about how surprised she was and how successful her families thought it was, etc. But when I asked if any of these recommendations were by adults who went through it, she was like well, no but...

There is so much pseudoscience and abuse, and the parents just eat it up because deep down they're ableist and desperately want a pill or magic wand to "fix" their kids.

Per the latest analysis there is like 200,000 kids that will age out of services over the next 5 years and a million plus over the next 10, and those adults are going to be coming with a lot of resentment for how they've been treated. We will have a lot to answer for.
posted by 80 Cats in a Dog Suit at 2:33 PM on April 11, 2019 [40 favorites]

To expand on "not a perfect parent", I'm pretty sure I've used all of these techniques on occasion. Sometimes it's for legit safety reasons - I don't care that you feel that running into traffic would be fun - but sometimes it's just because I'm tired and frustrated. And a lot of parents do these things on occasion to normal kids, too, especially to enforce things like gender roles. "We don't want our child to be bullied by other kids, so we want to make sure their behaviour is socially acceptable.*"

But to turn that into 40 hours a week of constant authoritarian re-education...

*It'd be better to punish and/or reeducate the bullies instead of the bullied, of course, and that seems to be something that parts of our society are slowly realizing, and other parts of our society are pushing back against.
posted by clawsoon at 3:03 PM on April 11, 2019 [8 favorites]

Metasarah, I want to say that my family's experience is *exactly* what you describe. I am relieved now in retrospect that nobody told me about Medicaid waivers and SSDI when my daughter was young.

Everyone insisted so very much that ABA was the best treatment for her. At the time, I felt like a failure because I couldn't give that to her.

Instead, that poverty meant that we focused on what situations overwhelmed her and what accommodations helped make her happy and successful. We embraced stimming because it told us how she was feeling before she was verbal. Our house is labeled with pictures; we've done what she needed us to do and it worked out.

It breaks my fucking heart to discover that other autistic kids went into ABA and came out with anxiety, depression and PTSD. Back then, we didn't know. But now we do. We know better. And I hope that allistic people start listening to autistic people-- and start doing better by them.
posted by headspace at 3:04 PM on April 11, 2019 [20 favorites]

Something that I've noticed is that a lot of my friends who were under-employed after college were struggling to find work that wasn't retail/food service and were remotely linked to social services, so they became ABA therapists and then had to suppress so much of their discomfort because it was the only jobs that paid remotely close to a living wage (and even then, it wasn't much, since it was only about $15-16/hr and didn't compensate for gas.) When I started sharing these articles with them, they were grateful to have a space to express their guilt and a rationale for why they were able to quit, since they were really unsure of how to talk about it, and as allistic people, went into it without much knowledge. I find all of this really problematic and predatory on a societal level and for how autistic children are treated, and which jobs get paid more.
posted by yueliang at 3:21 PM on April 11, 2019 [8 favorites]

Michelle Swan who is an autistic adult published this article almost exactly two years ago: "Behavior Modification Therapy Does Work." Content note: she debunks the argument in the title of the essay.
posted by muddgirl at 5:50 PM on April 11, 2019 [3 favorites]

"From reading the comments in the first article, it seems like a lot of therapists are using "ABA" to basically describe whatever self-developed program they want to use, so that insurance pays for it. "

This is absolutely the case. Insurance companies pay for ABA, so doctors prescribe "ABA" and therapists provide "ABA," even though everybody through the whole system is aware that it's not classic ABA. The documentation they send to the insurance company is quite clearly documenting something entirely different! But this is the charade we've all agreed to play so that children can get necessary therapies and supports.

Like, the doctor's prescription will literally say "15 hours a week of ABA, consisting of [list of therapies that are not ABA even a little]" and the insurance company approves it as ABA and the therapists bill it as ABA and none of it is ABA.

Many parents are well aware of this, and will ask in autism parents' groups (the better ones, that don't tolerate people chelating their child and refusing vaccination and crowing whatever the latest quack theory is), "Does $LocalTherapyProvider do traditional ABA or do they just call it ABA? I'm obviously not sending my child to traditional ABA."

(I am absolutely positive there is still "traditional" and abusive ABA all over the place, and not minimizing that, but a lot of what gets called "ABA" is definitely not traditional ABA.)

There is a school near me for children with autism that is based around a sensory support/integration curriculum, where children are given a sensory environments and options appropriate for children with sensory processing issues as part of their ASD, and the power to control those parts of their environments, and to stim freely, and so on. The children participate in setting their own social and academic goals, and participate in monitoring their own progress, and express their own preferences for supports. One kid will be at a standing desk playing with a giant rubberband with his feet while he does math. Another kid will be in a quiet cubby or even a dim "cave" doing his math. They take breaks when they need to, they chew on things, they talk too loud or hum to themselves, they wear noise-canceling headphones, they have fidget toys and different lights, they have access to gross-motor soothing areas, and this is all supported to assist them in functioning in a classroom. It is literally the opposite of ABA -- give the child what he or she needs, no matter how idiosyncratic (as long as it's safe), to help them do the academic work of learning -- but it's all billed to the insurance companies as ABA!
posted by Eyebrows McGee at 6:03 PM on April 11, 2019 [28 favorites]

I haven't seen data on adult ABA outcomes at all. Hopefully, a lot of the fear about psychological harm is overstated, and the kids will, by and large, be okay.

It seems frightening but plausible for ABA to spike one's odds of bad outcomes in the way that, say, conversion therapy or an Adverse Childhood Expericence score over 4 do.

It is probable that we're not going to know for decades which interventions generate resilient, well-adjusted adults and which ones generate, like, horrifying rates of suicidality. "ABA" including a huge variety of methodologies seems like it's going to make that water even cloudier.
posted by bagel at 6:13 PM on April 11, 2019 [1 favorite]

My husband pointed out this thread to me, as I do not have a lot of time for Metafilter these days while I pursue a PhD in ABA. I just wanted to make a couple super brief points because I am absolutely confident there are ways to discuss this topic in collaborative ways that promote the vision that we all share: to support improvement of the lives of individuals with autism. I understand that there are many adults with autism who identify with being autistic as part of their identity and I in no way want to undermine that. My perspective does come more from the world of individuals who are not yet able to communicate with others and may engage in severe behaviors such as self-injury or aggression. I do (obviously, based on my career choices) think that ABA can improve lives, teach skills including emotional expression, self-advocacy, and independence. This is the social validity aspect of ABA that is sorely lacking in many people's experiences of it. If people are "making others jump through hoops" for their own enjoyment, then I guess those techniques may use behavioral principles but it is terrible, unethical, and bad ABA. The Applied part of ABA should necessitate that procedures be social valid which involves including the individual and family in planning (particularly family if the individual cannot yet speak for themselves).

My other point is that the field of ABA has done a horrible job of describing what it is and collaborating with families in a way that is compassionate and accessible. There is a whole lot of bad "ABA" out there and it is so disheartening that many people have contacted this. My hope is that we can find ways to support other humans in a way that makes lives better, and incorporate their individual needs, desires, and dignity into anything we do with each other.
posted by chela at 7:34 AM on April 12, 2019 [8 favorites]

I came to echo what chela said. I work as part of an autism team that sees typically the most severe cases from the region and I have seen ABA do wonders for children and families. These conversations are problematic because they usually erase the experiences of people on the less functioning end of the spectrum. They focus entirely on the commentary and experiences of mostly high functioning adults with ASD and ignore the reality for many families. Notice how there is little discussion of individuals with ASD who cannot communicate, or who routinely and dramatically injure themselves and their family members. These conversations often ignore these kids, and yet these are the kids I see in clinic all the time.

Is ABA appropriate for treating things like seeming social awkwardness or for trying to get a child with ASD to behave more “normally”? In most cases, probably not. Can it be terribly misused and with traumatic results? Absolutely. Can it also dramatically help children adjust dangerous behaviors like reduce self injury? Absolutely. And not just for kids with ASD but for children and adults with a range of behavioral problems.

I have seen some incredible transformations and a lot of relief brought to families through ABA. I have seen families come to our hospital as a last resort before having to institutionalize their child for safety reasons and seen their child go home with them and stay home. We should as always be critical and analytical of these things, but it is ridiculous to me to be “pro” or “con” ABA as a whole. We can argue it’s misused and abused without throwing the baby out with the bath water. We also need to be mindful that these conversations erase the experiences of autism for many families. It always hurts me when I read these and the discussion focuses almost entirely on people with ASD who can communicate and express their feelings about the experience. This is not the experience for many families who may be reading this.
posted by Lutoslawski at 7:48 AM on April 12, 2019 [7 favorites]

These conversations often ignore these kids, and yet these are the kids I see in clinic all the time.

As an outsider, I've learned a lot from autism self-advocacy, but I must say I am often troubled by the way it seems to ignore or downplay the experiences of the most severely impaired. I recently read an autistic self-advocate complaining about having "grotesques being waved around at us" or similar (the word "grotesques" was definitely used); that's a hell of an attitude to have towards your fellow-sufferers and people you profess to be advocating for.
posted by praemunire at 8:13 AM on April 12, 2019 [3 favorites]

I recently read an autistic self-advocate complaining about having "grotesques being waved around at us" or similar (the word "grotesques" was definitely used); that's a hell of an attitude to have towards your fellow-sufferers and people you profess to be advocating for.

Was this in reference to the "I am Autism" film from those charming people at Autism Speaks, or the recent "All in a Row" play where the autistic kid is quite literally a creepy grey puppet when the other characters in the play are all played by humans (and where mysteriously there were enough free tickets for non-autistic theatre critics but none for any critics with autism despite even one of the non-autistic critics having checked)?

Because the word "grotesque" was used in both those cases - and was used to refer to not fellow sufferers but fictional autistic people written by non autistic people. And the puppet in All In A Row was both grotesque and almost literally being waved at autistic people supposedly to represent them. And when I google for "autism activist grotesque" that's what I get - comments about fictional representations of autistic people written by people who aren't, and like the people at Autism Speaks frequently claim to be advocates.
posted by Francis at 8:55 AM on April 12, 2019 [8 favorites]

No, it was not; I'm familiar with the controversy about the play (using a puppet amongst humans is unquestionably horribly inappropriate and othering) and wouldn't have mistaken it for that. It was someone speaking informally, somewhere on social media, and they were talking about real people. It struck me because it was so ugly. Obviously an entire movement is not responsible for what one person says informally; nonetheless, it's hard not to notice when advocates seem to be making arguments that don't take into account the most vulnerable segment of their population.

ABA is easily abused and can easily be directed to the wrong ends. Any therapy that is directed at the very young and at those with potentially limited ability to communicate their needs and aversions is, obviously, particularly open to misuse. It's clear to me that this has happened a lot. I believe the people who say that their experience with ABA was harmful. So please don't take this as a blanket defense of ABA. But the needs of the people who flutter their hands to stim and the people who require nonstop observation because of their propensity to self-injury may be different. I just read a longer article by a mother about her child with an idiosyncratic feeding disorder (not autistic) whose skin had turned faint green and whose ribs were plainly visible because all he could tolerate was baby porridge, and not much of it. Intensive ABA treatment seems to have helped with that. Maybe that child will look back at the experience as an adult and say that, although it did not look traumatic from the outside, perceived from the inside, it was horrible; I don't know. But a childhood of substantial malnutrition and aversion around a basic life function is undoubtedly horrible.
posted by praemunire at 9:49 AM on April 12, 2019 [3 favorites]

We live in Ontario. Lil' Monday is five. He's effectively non-verbal; although he's coming along. His verbal comprehension is pretty good, but stringing together a sentence is almost impossible for him. We're still working on toileting.

We have not received any government funding for ABA. We're paying out of pocket. We're also paying out of pocket for speech therapy. Right now, Lil' Monday goes to ABA for roughly 12 hours each week, and our speech therapist comes to us for 2 hours a week. He's in school for two and a half days.

Lil' Monday is a sensitive, empathic kid. He has some social skills already, which is amazing. And he was a social kid before ABA. He has a mischievous sense of humour. I love him to bits. Right now, my deepest desire is to have him tell me how his day was. His language skills are not quite up to the task yet.

Although ABA is held up as the gold standard in Ontario, we were aware of the controversy. However, we did have behavioural issues to contend with. Lil' Monday would hit us, teachers, other kids (rarely). He'd bang his head against the wall -- not stimming, just to get a reaction from us. He'd scream and scream and scream until he tired himself out.

We chose a reputable provider. There are usually four or five other kids there too, and Lil' Monday has made friend. We sit in on sessions. And we haven't seen anything l We've been clear about what our expectations are: stimming is fine. If he doesn't want to make eye contact, that's fine -- any recognition of who he wants to communicate to, or who may be speaking to him is sufficient. He can look at our shoes if he wants. The primary motivator when he started was snack food which worked great. The therapist didn't have to take anything away in order to give it back as a reward later. Now he enjoys getting into a silly game or playing tag.

Speech therapy works a little differently. It's a developmental program rather than behavioural. Many of the techniques are similar; short exercises, followed by a game and now talking through the game. We actually tried speech therapy first, but there were some basic skills that he didn't have until after ABA. But the skills he's learning in speech are more broad, more adaptable, than the (somewhat rote) skills he's still gaining in ABA. ABA is giving him the framework to learn from speech therapy.

If Lil' Monday doesn't want to go somewhere or do something, we track it and work around it. He gets my noise cancelling headphones when go to the mall. When we're out for dinner, I'll play iPad games with him (currently Lego Batman 3). If he has trouble adapting, we change our plans. And he's opinionated enough to let us know.

Lil' Monday has no hesitation about going to therapy (although lately he wants me to stay and play too). He's considerably less amused about school. And frankly, we have less oversight over his school day. I worry about therapy, but elementary school keeps me up at night.

This really isn't an argument for or against. I can see how ABA can be abused. And I can see how although our provider is accredited, what they do is not ABA as described. And I can also see that ABA is but one tool. I guess I'm trying to get across that not-all-autism-parents want perfectly behaved little robots. We're not (at least Mrs. Monday and I are not) acting out of WASP-ish enforcement of conformity.
posted by TheHuntForBlueMonday at 10:33 AM on April 12, 2019 [6 favorites]

I've noticed a similar thing with speech therapy, where the more experienced and intelligent therapists will adjust their approach to the child's needs and interests, while others will stick rigidly to the program. With a rigid therapist, a child who doesn't fit the standard speech therapy approach will either get nothing from it, and/or be rejected as being "not ready for speech therapy". It seems like it takes self-confidence and experience for therapists to start expanding their toolkit beyond what's prescribed by their training or their supervisors in a way that allows them to respond flexibly and empathetically to the child in front of them. Sounds like this happens with some therapists who start as ABA therapists, too.
posted by clawsoon at 11:57 AM on April 12, 2019 [2 favorites]

That seems about right, clawsoon.

One of the aspects I'm trying to wrap my head around is that both ABA and speech use superficially similar methods. For example, pictographic communication systems for nonverbal children, tracking achievements on developmental scales.

How the programs are managed is different. ABA is (here at least) playbook oriented. It's descriptive, not proscriptive. They're not trying to force him to use two hundred nouns, but once he does, they'll unlock other targets. In the mean time it's like grinding a video game.

Speech therapy seems to be a little more customized. Or at least practitioners have more programs and techniques they can utilize, and tailor the set of programs much more closely to Lil' Monday's particular needs. The programs are constructed so that he uses the same skill differently, in multiple contexts.

Comparing notes, it sounds like OT (occupational therapy) might be using a similar set of tools.

Each type of therapy is effectively in it's own silo. We coordinate, and we've even been able to get our various practitioners to meet and consult each other (which is rare). However, the jargon, the data collection, the operational aspects of each type of therapy are dissimilar enough that sometimes I have to translate. I'd love to use his needs in speech therapy to inform his program in ABA, but that's not a thing.
posted by TheHuntForBlueMonday at 1:09 PM on April 12, 2019 [2 favorites]

Mum here of autistic daughter tho (hopefully) not an 'autism mom' per se.

What a great article and such a good insight into autistic behaviour - the little motions and ticks that are hard sometimes to pick out, but which communicate a lot.

The best professional help my daughter has had so far is where the teacher watched her for an hour and took note of every single thing she did and how she reacted to everything going on. (Also, my daughter was up a tree when the teacher came. So that was a good indication that she was reacting to something.) The result was AMAZING, and useful to everyone, as they discovered things I have never picked up on during ten years as her mum.

The worse was not ABA (happily it's not too common in the UK) but was when they used generic autism practices to try and get her to control herself and see the 'consequences' of her actions. (I didn't know at all that this was their ethos. I feel very bad that I let it happen.) Now, my daughter can be super vicious and violent. I have bruises all up one arm from her biting. But a fool could see that this comes from EXTREME anxiety, as does so much autistic behaviour. It's a completely different foundation on which to do any type of behaviour management. My daughter, specifically, has Pathological Demand Avoidance (PDA), a set of behaviours recognised in the UK but not so much in the US, and to manage it you have to in many ways do the exact opposite of ABA. Lots of breaks. Lots of fresh air. Plenty of stim time. Lots of independence. They think they are a miniature adult - that's ok. No direct orders. Plenty of choice (within boundaries). Beat about the bush. Make everything a joke. Treat them as an equal.

'Mainstream' autistic people will of course require more boundaries, more routine, and more direct speaking. But IMO the ethos should be the same. As equals, we can learn from each other.
posted by low_horrible_immoral at 1:50 PM on April 13, 2019 [2 favorites]

I hate how there are people driving this wedge in the community between autistics that are more independent and those that are more dependent, as if the only people speaking out about ABA are the super independent people who don't understand the needs of the non/limited verbal and injurious on the spectrum.

My son is diagnosed limited verbal, being 15 and on the conversational level of a 6 year old. I've been in the hospital three times this year alone for concussion checks after my son melts down and regularly has to stop my kid from slapping himself. His doctors and teachers have been quite frank that he won't be able to live on his own independently and will always need a structured home life.

And you know what? I still don't agree with ABA or use it on my son.

Stop using kids like my son as your, "well the anonymous masses agree with me in email." No. They just can't speak up for themselves against it and you and their desperate parents all agree it's right.
posted by 80 Cats in a Dog Suit at 5:49 AM on April 16, 2019 [7 favorites]