I am an autistic parent, which means I have a relatively high chance of having an autistic child, which means I’ve started thinking about early-intervention treatments for autism. (After all, autism is often diagnosed as early as eighteen months, and I’m not exactly going to have time to do research when I have an infant.)
Many of my friends disapprove of applied behavioral analysis (ABA), one of the most commonly used treatments for autism. I am inclined to be more sympathetic, I think, for several reasons. First, it claims to be the most evidence-based treatment for autism. (As far as I can tell, this is true but complicated; more on that later.) If a treatment is evidence-based I’m always going to take a second look. Second, many of the groups that advocate against ABA support discredited pseudoscience such as facilitated communication, which makes me not trust their judgment very much. Third, I have a natural tendency not to want to admit beliefs that will make my friends mad at me, and “I think this therapy you think is abusive is actually fine” might make people mad at me.
That said, setting those worries aside, I have some concerns about ABA. I welcome opinions from people with more knowledge about ABA.
The evidence is not that great. It’s true that ABA is the most evidence-based autism treatment. As far as I can tell, it gets this status because most autism treatments fall into the category “untested but plausible,” with occasional excursions into the land of “what, no, there is literally no reason to think that would work, the fuck is wrong with you.” (This is a somewhat puzzling state of affairs, because we do spend lots of money funding autism research, and we can’t spend that much money trying to give fruit flies autism.)
This is a fairly representative list of studies of ABA as an autism treatment. Note that no studies follow the children until adulthood. Most have sample sizes of twenty to fifty children. And that’s not even including the really embarrassing stuff: the study of the Early Start Denver Model used parent report for many of its outcome measures even though the parents knew which group their children were in.
I understand that an appropriately blinded randomized controlled trial with a reasonable sample size that follows children to adulthood is really expensive. However, if you’re going to talk about how your treatment is evidence-based, this is the sort of thing that is necessary. The evidence for ABA at this point is less “gold standard” and more “plausible in early, exploratory trials.”
So I feel justified in having other qualms.
Response to adverse event reports. Many autistic adults report that they have PTSD and depression from their experience of ABA. That doesn’t mean that ABA necessarily causes PTSD and depression– perhaps it’s a coincidence, or perhaps they had unusually bad therapists. But I think if lots of people are saying “your therapy gave me depression,” the only ethical thing to do is go “wait, holy shit, we need to study this.”
In my anecdotal experience, I have not seen ABA supporters say this. Instead, I have seen many ABA supporters say that people reporting adverse mental health consequences are pseudoscientists who hate evidence-based medicine, which is not the way you respond to people saying your therapy gave them PTSD.
I have seen some ABA supporters argue that perhaps it causes PTSD and depression among the “high-functioning,” which seems like a really dumb argument. First of all, the whole point of your therapy is that it turns autistic people with high support needs into autistic people with lower support needs; maybe those people have low support needs because your therapy worked. Second, a lot of people with very high support needs can’t communicate in sign, speech, written language, etc., so of course they’re not going to be saying “ABA is terrible and I got depression from it,” even if it gave literally 100% of them depression.
Normalization. I don’t mean to say that faking nonautistic is not a useful skill. It opens more options to autistic people: while many people (including myself) find that faking nonautistic is not worth the cost, I’m not going to impose that on everyone. Many people want to work jobs or have relationships that require them to fake nonautistic, and it’s good to give them that option.
However, in my opinion, it is also not a skill it makes sense to teach people who presently can’t function very well. If a person does not have use of language (whether spoken, written, sign, or through use of AAC), has a severely limited diet that may cause them nutritional deficiencies, regularly experiences meltdowns, self-injures or harms others, or experiences one of the many other severe impairments that can be caused by autism, those need to be the #1 priority. For that matter, if a person is anxious or depressed, has low self-esteem, has executive function issues that mean they can’t meet their goals, or can’t understand nonautistic behavior, then those issues need to be the priority. Only once all of those have been sorted out does it make sense to concentrate on eye contact.
And yet in many ABA programs eye contact is one of the first things worked on, even in autistic children with severe difficulties functioning. It seems to me that this is less about giving autistic people options and more about saying that autistic ways of being are inherently worse than nonautistic ways of being. That is not a therapy I can get behind.
“Effective” is one of those words that depends on your values. Effective for what? Regularly beating your children is a very effective way of making them so scared of you that they instantly and quietly obey; I don’t want to beat my kids in part because I think that’s a terrible fucking goal. And turning autistic children into facsimiles of nonautistic children is also a terrible fucking goal.
Aversives. Fortunately, the use of aversives has been phased out in ABA treatment. In addition to the physical abuse of children (I think it should be fairly obvious why this is objectionable), aversives sometimes included things like taste aversives, which don’t seem that bad to nonautistics. However, as an autistic person, being forced to eat something I have a severe taste aversion to is literal torture. It is wrong to do that to a child.
However, Lovaas’s original randomized controlled trial of ABA for autism did include the use of aversives. How do you know that aversives weren’t the active ingredient? Therefore, this change (which is very positive) makes the evidence base for ABA even more limited.
Prompt dependence. As far as I know, prompt dependence has not been studied in autistic people, and any claims about it should be taken with appropriate grains of salt. But, anecdotally, it is a very common experience among autistic people to find yourself doing things because other people or the environment prompts you to, without actually intending to do it. Sometimes prompt dependence is helpful (I personally use it to get work done). Sometimes it is very unhelpful, as when you find yourself doing something that you don’t want to do or that is even harmful to you.
I am concerned that many forms of ABA, by rewarding specific behaviors in response to prompts, would increase prompt dependence in autistic children. It would certainly not teach the essential life skill of noticing that you’re doing something because you’re being prompted to do so and being able to do something else.
Amount of time spent in therapy. ABA often involves twenty to forty hours a week of therapy. This seems to me to be an excessive workload for a toddler, particularly when you consider that therapy is stressful and requires a lot of energy, so the remaining hours are unlikely to be high-quality hours. When does the child get to play? I don’t just mean this as a “play is fun and it is mean to deprive developmentally disabled children of the opportunity to play.” The current scientific consensus is that play improves social skills and executive function. (See, for instance, this report from the American Academy of Pediatrics.) Those are exactly the things autistic children are impaired in. Without strong evidence of efficacy, it seems ill-advised to give children so much therapy that their play time is limited.
Behaviorism. Unlike many autism advocates, I do think that there’s an appropriate role for behaviorism as one component of therapy for mental disorders. However, pure behaviorism has been rejected in most areas of psychology. Patients with mood disorders and personality disorders receive therapy with both a cognitive and a behavioral element (and often with other elements, such as mindfulness). Experts no longer advise not comforting crying infants for fear that it would incentivize the child to cry; indeed, comforting crying infants is often recommended as a way to build attachment. Many people are concerned that extrinsic rewards of the sort promoted by behaviorists may decrease intrinsic motivation and ultimately lead to lower performance. We understand the importance of social learning and attachment in children’s psychology.
And yet here we are treating autism with pure Skinnerian behaviorism. I have no doubt that pure Skinnerian behaviorism is effective for some things– it works quite well for phobias– but I would be really really surprised if it were the correct treatment for a complex condition like autism. Teaching children to say “hi, what’s your name?” in response to someone saying “hi” is not actually teaching any useful social cognition. There is, in fact, a difference between people and chatbots.
I don’t know what my ideal autism early-intervention program would look like. Certainly it would be customized to the child. Maybe there’d be a big play component. Maybe there’d be work on building attachment between the child and caregivers. Maybe there’d be age-appropriate cognitive therapy (despite the difficulties in providing cognitive therapy to children without language). Maybe children could play at a play group with both autistic children and neurotypical children who have been taught how to play with autistic children, so they could build social skills in an easier environment. (The neurotypical children seem like they ought to be easier to teach than the autistic children, anyway, since they’re the ones without social impairments.) Maybe there would be a lot of occupational therapy to help with motor skills, feeding, speech, sensory sensitivities, and other common areas of impairment. Maybe children would be taught to identify their needs and self-advocate. It is hard to know without more study. But I feel like pure behaviorism is not it.
Knee-jerk reaction: I’m (probably) not autistic, but if you pulled me away from all my peers as a young child and had me spend forty hours a week being trained to maintain eye contact with people I didn’t like, boy howdy would I have developed some psychological issues from it.
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(Suggestions premised on your kids being communicative, because that’s as far as my own experience goes.)
You might focus on helping your kids manage sensory issues. I’m autistic (albeit with a somewhat unusual presentation), and I’ve found mindfulness-type interventions like meditation really helpful for finding a place between total sensory overload and dissociating all the time.
When I was a bit older, I also found reading social science and history helpful for developing more thorough understanding of how neurotypical people’s minds worked, as well as their social behaviors. (Erving Goffman’s “The Presentation of Self in Everyday Life” was particularly helpful.) This might be less useful for your kids than it was for me, since I expect that as an autistic person, you’ll do a better job than most neurotypical parents explaining how people actually are instead of giving a normative/wishful-thinking account of social relations.
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Ooh, you totally should read Goffman’s The Presentation Of Self In… ah. Nevermind.
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My intuition is that educational video games could be very useful, since they tend to be less complex and more predictable than reality. So they could offer an environment that challenges the kid in one way, rather than in multiple ways at the same time. They can also be used for self-study by some kids, which allows kids with reasonable self-motivation to study when desired.
Games can also be more patient than people, allowing for a more gradual learning curve and more repetition.
A bit of searching shows that there are some studies about this.
Teachtown is a game environment for autistic children.
Let’s Face It is one too and seems to be free.
Both of these have been studied academically.
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I don’t want to pass myself off as an academic expert in ABA, but I am a BCBA with experience and knowledge in the subject, so I thought I’d offer a few thoughts.
1. On the question of evidence base, I think you are right to say that ABA is the most evidence based treatment for autism, but that that is an unfortunately low bar. It’s also my impression that researchers have their hands tied for legal reasons at this point. Because ABA is the officially recognized treatment, it’s difficult to have a randomized control group in any study, because that is effectively denying “the officially recommended treatment” to children. If the control group is self selected by parents that are ok forgoing ABA, then to obviously have a selection problem. If you can think of a creative way around this, please share.
2. Because ABA is not that old, there is a good chance that the people who report PTSD are from an older cohort who got the more aversive heavy forms. Are there fewer such reports in people in their teens and 20s? That would be an interesting research project.
3. This relates to your concerns about, e.g., eye contact training, and attempts to reduce/eliminate stunning. There are 7 dimensions of ABA. 6 are more or less objective and scientific. But one of them is “Applied”, which means that the therapy is supposed to target “socially significant behaviors”. That is largely the value dimension, and there is nothing inherent in ABA that says eye contact, stim reduction, or anything else must be the focus of the therapy. Rather, those focuses are a function of the culture and concerns of parents, teachers, behavior analysts, and the wider community. There’s lots of room for criticism here, but it’s less a criticism of ABA than of the priorities of people surrounding the autistic child. ABA can be applied to any behavior that is socially significant, but since that concept is relative to the lives and values of the immediate and extended communities around the child, there is a great deal of flexibility in the behaviors that are chosen.
Hope some of this is helpful.
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As a parent who is against ABA (and no, it wasn’t bad ABA. It was a quality program; the director would not have it otherwise & it killed my child’s love of learning & interests until it was stopped),
first recommendation:
Professionals should be working with us to figure out what our children and families actually need rather than giving us poorly informed advice based on – faulty premises, assuming that all autistic children need the same thing. If the only informed recommendation is ABA. Or telling us “If you want to do [this other thing that we don’t support], you would have to move elsewhere”, you know there’s something wrong. And that they know it too.
But they’ll treat you like you’re doing the wrong thing – that if you just let them continue to do to your child what you cannot in good conscience support, that you are failing your child. [That’s abusive treatment that destroys (1) the child and (2) the child’s family – if it’s allowed to continue. 😦 ]
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*and it wasn’t outdated ABA either; it was only 4 years ago.
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I’m autistic myself (Aspergers). My strongest recollection of childhood is simply not understanding certain things – at some point I had the impression that people sometimes get angry with me, or with each other, for no apparent reason at all and the thing to do about it is just to wait until tomorrow because being angry somehow clears overnight. This way of dealing with people went really badly for me when my parents once had a big falling out that lasted more than one day.
One of the best things someone could have done to help me throughout my childhood is made me feel that I could safely ask them any question about anything I didn’t understand and they’d answer it, without making fun of me – and if they spotted something that I obviously hadn’t worked out, explain it to me as best they could. Things like looking at other people when you’re talking with them (in my mind, since it’s the ear that hears after all, looking the other way with one ear turned to them was the most logical approach for a while). If someone had just taught me the rule then little me might have had an easier time as it was exactly the kind of thing I didn’t pick up on automatically.
You’d have had to explain a lot of things to 10-year old me that other kids picked up at 5-ish, but on the other hand I was always ahead of my age academically so I guess there was a bit of “he’s so smart, why is he doing [stupid thing]?” (or, “he’s clearly doing that on purpose”).
My reaction to seeing a BBC programme on ABA was, I’m very sympathetic to this approach and I can see ways in which such a therapy could have made parts of my life a bit easier. I think a form of therapy where you’re clear about what behaviour you expect, teach and practice it in small steps with immediate feedback is much better than expecting me to somehow find out for myself the exact kind of things that my brain is not good at. That I’d have preferred a “non-abusive” form of ABA goes without saying.
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this is really not relevant to you as an autistic parent, but there’s some really promising stuff (with RCTs and everything) around teaching non-autistic parents to understand their kids better. The PACT intervention (http://www.sciencedirect.com/science/article/pii/S0140673616312296) works with the parents (not the child) to help them notice their kid’s responses and interact with them in ways which promote social communication.
My hunch is that a lot of the social communication problems autistic people have are a) weird brain/social model, and b) years of sensory/motor/social model stuff getting in the way of social skills practice.
Functional behaviour analysis is a major problem with ABA imo. Not that there’s anything wrong with trying to figure out why a kid is doing a thing, but a “scientific analysis” tends to produce a level of surety that’s probably not a great idea. An adult observing a kid’s behaviour and making guesses is going to be wrong at least some of the time. And if your analysis framework looks at a screaming kid and can’t produce “they’re in pain” as a reason for screaming (because that’s not a function) then you’re going to be wrong a lot of the time.
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“They’re in pain” very often is identified as a function. Usually it’s labeled “pain attenuation” or “automatic negative reinforcement”.
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content warning: psychiatric abuse/trauma
I appreciate your looking into this subject and sharing the perspective you’ve formed. I can imagine it’s an area that feels difficult to form an opinion, given that many people you care about have reported intensely negative experiences or oppose ABA based on other people’s intense negative experiences (among other reasons). I find that people who say that certain practices in the mental health system traumatized them often receive intense invalidation. (“Oh, that practice was justified given the circumstances, which means you can’t have nightmares about it.”) And I heartily agree that it’s important to engage with and acknowledge people’s accounts of harm.
I don’t have much substantial to say here, but thanks for this post! I feel like I learned something from it.
(Also, thanks for calling out FC as pseudoscience. That’s a conversation which needs to happen in autistic communities, because it currently seems like an opinion that’s Not Allowed despite the scientific evidence.)
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Disclaiming: i have no idea about the details of ABA.
This feels like it’s sort of taking something you have to do with many non autistic children and dialing it up a bit.
Hammering it into non-autistic children to say “please” and “thank-you” semi-automatically doesn’t teach them much useful social cognition but even as a simple automatic it will ease their life a little bit.
Learning to semi-automatically say “Hi, what’s your name?” upon meeting new kids in a social situation genuinely makes everything else just a little bit easier.
And I sometimes wonder how much of the time normal people just let the chatbots run their mouths. Being able to exchange mild pleasantries without conscious thought is a minor skill in it’s own right and one which is quite useful.
Also:
My social groups tend to include lots of people on the spectrum and it can sometimes be amusing how much some people don’t realise this.
One was a statistician who’s child was autistic, she’d recognised that her own dad was autistic but it took a number of years for her to twig that maybe she was in the same boat as her father and kid.
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When I first started pursuing a diagnosis for my autistic child, I talked a lot with a friend of mine who has two autistic boys. She’s hardcore into ABA so that was basically all the advice she could give me: here’s how to get him into Medicaid to pay for the ABA, here is the place that provides ABA, here is how you will support ABA at home. And I kept asking, why? what’s so great about this that’s better than anything else? what is it about, what do they do? And she wouldn’t really answer me. It started feeling really culty, which is something I’ve later experienced with other ABA proponents: it’s presented as the ONLY treatment for autism, that denying your child ABA means setting them up for a lifetime of struggle, that with ABA they will barely even be autistic at all. But all my friend’s “proof” — that her kids had made a ton of progress since they started — wasn’t really convincing to me, because my kid was six already and had made similar progress even though we hadn’t done anything special. It is normal for autistic kids, especially in a reasonably rich environment, to make huge gains without additional therapy as they grow older.
There is one valid point she made, though, which is that there isn’t much else that is specifically geared to autism. My experience with speech and occupational therapists is that they aren’t necessarily very knowledgeable about autism. I put my kid in school partly to have access to all the special-ed services there, and yet I’m constantly being asked by the teachers, “Is this related to his diagnosis?” Uh, I don’t know? I’m not an expert about autism, yet I’m the closest thing to an expert on autism in my kid’s life.
I agree that 20 hours a week is ridiculous. I also think that a supposed “positive” reinforcement is actually aversive … that is, they will take away whatever the child’s biggest obsession is (a toy, a game, a food) and ONLY allow it during therapy, and only as a reward for doing the work that’s asked of them. And for an autistic child that’s very aversive. The worst punishment we could ever devise for my son, far worse than a timeout, is to take away his Legend of Zelda sword, which is why we never do it for anything other than hitting with it.
I just feel like ABA’s main focus is “how do we motivate the child to do things?” whereas I’m reasonable able to motivate my kid, I just want to know what things, exactly, would be helpful for him to work on? Are there activities he could do that would strengthen his hands to help with his (truly terrible) handwriting? Are there sensory activities that could reduce his need to stim? (E.g. will a lot of oral activities like chewing gum reduce his need to chew on the collars of all his shirts? Because that would be nice for our clothing budget for sure.)
So my kid has got speech therapy, occupational therapy, and a lot of attention from his teacher in a small classroom. But if I could, I’d add one session a week with an actual autism expert for me, and one for him. In mine, I could bring up the problematic behaviors we were dealing with and ask if they can help me figure out what’s driving them, ask for games that can help my kid practice the skills he needs, that sort of thing. And in my kid’s session, he could ask questions about anything he’s struggling with, or the therapist could do helpful activities with him. That’s all he really needs. Not 20 hours a week of what’s essentially dog training.
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P.S. Have you read Neurotribes? It definitely comes from a very strong point of view, but I found it fascinating.
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hi there, really interesting to read your thoughts on this subject. I have worked with children in the spectrum for a long time and as an ABA therapist for many of them. I was for a time very much almost part of the cult of ABA, I was hardcore about it, there was no other way. I didn’t use aversives or punishment and teaching play skills was a always a big objective for me, but I did things like work through a tantrum with a 4 year old in case the function of the behaviour was to escape and avoid, that I’m not comfortable thinking about now. On the other hand i worked with kids who were self injuring in terrible ways that hardcore behavioural strategies were the only way to go to address, so no regrets there. Then I had kids of my own and started to be uncomfortable about using extrinsic reinforcement straight away with a kid but instead that I should try “finding the smile” (Floortime term) what made them tic and trying to get them to share the joy with me, like I did with my own kids. I also saw that kids learn about their world through play, like, for reals and that really was were the focus of intervention should be -Play skills and also then came across the concept of Joint Attention (which is building attachment and sharing the joy you find in things with those around you – first step teaching a kid how to point) My research led me to the ESDM model, which for me made sense. There are elements of ABA in it – eg the effective using and fading of prompts, task analysis (all teachers should get ABA training for some basic teaching skills like that) but also a huge emphasis on teaching play skills, joint attention, social communication goals etc have a look yourself. I know the evidence base is not gold standard but its definitely worth reading about. All the best.
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