Two reports raise questions on early autism treatments.
November 24, 2020 2:56 PM   Subscribe

Hot on each other's heels, an umbrella review from Cooperative Research Centre for Living with Autism (based in Australia) and a meta-analysis from Boston University have flagged a range of concerns.

An umbrella review of "the findings of a decade of non-pharmacological intervention research" from Autism CRC, according to its authors, did find "evidence for a number of interventions" but also found that "quality of life outcomes were rarely assessed". (Link to umbrella review.) Meanwhile, Boston University researchers conducted a meta-analysis "to determine whether psychoeducational therapies for young autistic children are effective" and, say its authors, found "three ethical problems": poor study design, failure to disclose conflicts of interest, and a "lack attention to adverse outcomes". (Link to Psychological Bulletin page.)

Emphasis here is mine.
posted by bixfrankonis (12 comments total) 31 users marked this as a favorite
From the umbrella review: "Only 8 of the 58 systematic reviews included any information on potential harms or negative effects of interventions."


And from the Spectrum News meta-analysis article:
Across intervention types, there were too few high-quality studies for us to compute reliable statistics.
Altogether, our analyses revealed three ethical problems: Most studies are poorly designed, fail to disclose [conflicts of interest] and lack attention to adverse outcomes.
We found that only 6 percent of the studies with COIs had actually reported them.
Only 7 percent of the 150 studies we examined mentioned adverse events. None mentioned harms, nor described systematic procedures for measuring adverse events.
This is infuriating and heartbreaking - I mean, MAYBE there aren't actually a lot of adverse effects and MAYBE all those conflicts of interest aren't actually influencing the research, but it seems much more likely that the conflicts of interest ARE influencing the results, and likely that there have been important negative effects that, in any ethical study, would be reported.

As with so many of these kinds of reports, I am angry and alarmed to learn about this - but I am also very glad, because now I know more than I did before, and now a lot of other smarter people with experience in this area of research also know more, and now that we know, we can push, however hard it will be, for better studies and more rigorous review of these studies, and ideally for some consequences for those who don't reveal conflicts of interest and fail to report adverse effects. (Like, surely, all studies that involve living creatures could be required to have at least an appendix covering adverse effects, which could even be a single sentence listing things they looked for, followed by another saying which, if any, they found.)

I'm so glad to know the umbrella review was done, and I so appreciate a fairly layperson-friendly discussion.

Thank you so much for posting this, bixfrankonis.
posted by kristi at 7:49 PM on November 24, 2020 [8 favorites]

I read this right after you posted it yesterday and was conflicted about commenting. It's an important topic and I'm glad someone is paying attention because because being a parent of a child with an ASD diagnosis often feels like an extended episode of Survivor. You don't know who to trust, you are getting conflicting information or none at all, you have to make decisions in a complete vacuum and these decisions can have life long consequences. It can be a lonely and isolating experience but having better information to base decisions on would go a long way to help.
posted by victoriab at 4:48 AM on November 25, 2020 [5 favorites]

I am speaking as a non-autistic parent of an 18-year-old autistic person. To any parent of a child with an ASD diagnosis reading this: please please please seek out the perspectives of autistic adults when considering treatments for your child. The Autistic Self Advocacy Network and the Thinking Person's Guide to Autism are two good places to start. A lot of the "therapies" pushed by non-autistic professionals, such as ABA, are often abusive and traumatic.
posted by Daily Alice at 6:09 AM on November 25, 2020 [25 favorites]

Echoing all here: thank you soooo much for posting this, and good discussion above
posted by JoeXIII007 at 11:17 AM on November 25, 2020

I am glad that the authors of these reviews are doing this work!

Applied Behavior Analysis sounds a whole lot like [gay] conversion therapy, now banned in Ontario and likely soon to be banned Canada-wide. And for good reason: they were both developed by the same "scientists".
posted by heatherlogan at 12:47 PM on November 25, 2020 [3 favorites]

ABA-trained people are in all the schools, too, because ABA parents were very vocal about having only ABA approaches for their kids. Going to take a generation to undo it all.

But, it's happening. Slowly.
posted by cape at 1:05 PM on November 25, 2020 [1 favorite]

But, it's happening. Slowly.
It is, but the power of the phrase "evidence-based treatment" is strong. Last year a paper dropped purporting to show that autism can be "resolved" through such "evidence-based treatments" as ABA. This claim was based upon only 7% of kids studied having "recovered"…despite that this recovery tended to include the "recovered" kids having to “contend with language and learning disabilities and a variety of emotional and behavioral problems”—which to me sounds a lot like a bunch of traumatized autistic kids being deemed "resolved".
posted by bixfrankonis at 3:04 PM on November 25, 2020 [3 favorites]

It's also frustrating in that the essential philosophies of ABA aren't... changing as quickly as the names people use. Which makes it harder, I imagine, for allistic parents with autistic kids to figure out who to trust: "stay the fuck away from ABA" is a pretty clear hard line in the sand, but it's harder when the names for different approaches keep changing.

For example, a while back, a friend of mine asked me to vet a therapist his county had referred his two-year-old to for early intervention as a result of a slight language delay. The kid in question is being raised trilingually and slight language delays are common for multilingual kids, usually not permanently, and my friend knows this and isn't too concerned about the delay itself--but he wants to do the very best by his kid. He does ecology work and he'd wanted to run this guy's website by me because I do brain and behavior work and I am more familiar with whether things are red flags than he was.

The guy was running DIR/Floortime, not ABA, and his website had a lot of discussion about avoiding ABA, and I'm frankly way more out of the loop than my partner (who hangs out in a lot of pro-vax and autism education communities and does some public health and advocacy stuff) these days. It looked... okay to me, since it kept emphasizing being "child-guided", and it wasn't ABA, and the jargon the therapist was using wasn't my field. But I yanked my spouse in to have a look, and they blanched immediately: as it turns out, DIR/Floortime is very very frequently used in conjunction with ABA, and in a lot of ways is similar: looking for the "currency" of the child (i.e. whatever the child finds rewarding) and leveraging that in order to encourage and promote behaviors that look like whatever the therapist or parents are expecting in terms of engagement. In other words, there's a little more plausible deniability about trying to make your kid fit a specific mold and learn to mask, but learning to mask is absolutely an end goal.

On top of that, speaking purely for myself, it's hard for me as an autistic academic who does behavioral work on nonhumans to navigate much of the autism literature. Much of it is just completely antithetical to the lived experiences of all of the autistic people I know, so it's hard to trust it, and so much of it is actively painful and dehumanizing to read. The problems run so deeply through the literature that it is often easier to sidestep it and focus on a different question. So it's very difficult to evaluate whether a given approach is in fact evidence based or not because autistic researchers have been systematically excluded from the field (as a consequence of the dehumanizing approach of the field and stigma against openly autistic people in research despite the fact that we're all over the place in research) and therefore there are a lot of studies based on the assumptions of allistic people, usually parents. This is beginning to change--I hope brook horse, who does exactly this sort of work, will choose to chime in at some point--but not fast enough. It's hard going. I have spoken with multiple other autistic people in research who did what I did when I was settling on a field and stepped briskly away because it hurt.
posted by sciatrix at 3:38 PM on November 25, 2020 [9 favorites]

I’ve been thinking about this since yesterday and trying to formulate a lot of thoughts. This is gonna be a mess, but, well, the field is too. For reference: I'm a clinical psychology PhD student with a focus on autistic adults. I have been diagnosing autistic children and teenagers for in a community clinic for a little more than a year now. I'm also autistic with half a professional diagnosis (love those "provisional" diagnoses, love to pay more to get a full diagnosis). Thanks for the shout-out, sciatrix, that warmed my heart. Hopefully I can live up to your expectations!

1. I’m not surprised by this not just because autistic adults have been saying it for years, but also: the Department of Defense came out with report a few months ago (they pay a lot for military kids to get autism services and want to make sure their money is well spent). Conclusion: ABA doesn’t work. These reviews may actually have been included in the report, as I remember it mentioning two major systematic reviews as well as their own research.

2. The problem with ABA is that behaviorism does work. It works very well for all sorts of things--I use it all the time with adults with depression, ADHD, anxiety, whatever. Behavioral activation and exposure are two key techniques in my toolkit that often give excellent results. You hear about how effective CBT is, right? There's a reason the behavioral piece is in there.

The thing is, when we use behaviorism with adults who are not developmentally disabled, it is always 1) with their consent, 2) based on their goals and needs, and 3) fully under their control. When I use behaviorism with a client with depression, I'm not sitting there saying, "Okay, if you do this behavior that I've decided is important, I will give you this sticker." That would be a terrible misuse of power and also undermine the client's independence. Behavioral principles are really good at changing behavior, and that is why they should only be used by and for the client according to their goals. If we do anything based on reward, it would be, "Okay, you have decided you want to encourage this behavior in yourself, how will you reward yourself when you succeed?"

But with autistic kids (kids in general, but fewer neurotypical kids are routinely shuffled into this sort of program), we don't have their consent, we aren't doing it based on their goals and needs, and it's not in their control. It should be obvious why this has the potential to be so, so harmful. And also ineffective. That’s kind of the catch-22. It works, and also it doesn’t. It reduces certain behaviors, for a certain period of time, because rewards and punishment work. But if it’s not self-directed based on your own goals, it’s 1) likely to harm you, especially if you were using that behavior to fill a need that now goes unfulfilled, 2) unlikely to keep working once the outside reinforcer leaves. This is the inherent danger. Not only are you suffering because you’re being forcibly kept from filling your needs, but everyone thinks you’re making “progress” and doesn’t teach you any actually helpful skills to fill your needs. Then the clinician leaves and it all falls apart because you had no real skills or motivation, you were just hiding things because someone else was bribing you too.

3. The "evidence-based" part of EBT just means: we saw improvements on the outcomes we decided to measure. Let me go through the outcomes in the first link and talk about what they mean in the autism research:

Social-communication: Increase in eye contact, gaze shifting, combining gesture and voice, situation-appropriate expressions, attention to voice, typical prosody, reciprocal conversation. We are not assessing the quality of a child's relationships, but only discrete behaviors that are broadly considered to be "good" social skills. Consider that this does not actually assess whether this works at improving relationships. Let me tell you from experience: it's perfectly possible to do all of these things "right" and still be ostracized. This also doesn't take into account whether these "skills" come at the expense of other abilities. For example, many autistic people have said that making eye contact reduces their ability to process language. Personally, I know my social and motor skills are a "pick one" situation. If I'm focusing on our conversation, making eye contact and emoting properly, my proprioception and motor skills get shot to hell. Vice versa, if I'm focusing on using my motor skills to not send my bowl of mac and cheese flying to the floor, my prosody and affect drop straight out. Ask my partner what it's like to try to talk to me while I'm making dinner.

Restricted and repetitive interests and behaviors: Reduction in stimming, increase in imaginative play (rather than repetitive use of parts of objects), reduction in how much they talk about special interests, better ability to tolerate interruptions and flexibly shift from task to task, better able to tolerate unexpected changes. Consider that many autistic people describe being forced to stop stimming as actively painful and harmful to their mental health. Notice that only one model had any evidence for improvement in this area. Notice also that this method (Pivotal Response Treatment) focuses on self-management of repetitive behavior and focuses only behavior that is truly disruptive in the individual's life such as self-injurious behavior. (Not endorsing this method as a whole, but highlighting this aspect of it.) Consider also that "reducing how much a kid talks about special interests" typically just means "I've made this kid afraid to talk about the things they enjoy." I also have yet to see any therapy that actually improves tolerance for interruptions and change. Believe me. I've looked. I would fucking love to be able to order delivery and not pace in circles for the next 45 minutes because I'm unable to start anything for the fear of being interrupted by the doorbell. I would love to not have a panic attack when my FIL calls while I'm making a sandwich and offers to buy me lunch and bring it over (I love my FIL and I love this restaurant, I was just ALREADY MAKING A SANDWICH AND NOW IT IS ALL VERY WRONG. Yes I did eventually figure out I could just put the sandwich in the fridge. No, it didn't make me feel any better).

Sensory behaviors: Reduced sensitivity to noise, reduced sensory-seeking behavior (chewing, licking, smelling, touching, or peering at objects). I have never seen a study that showed effective reduction in sensitivity to noise; I have seen case studies that successfully reduce sensory-seeking behavior. Invariably these are ones where the sensory need is filled in some other more "appropriate" way, rather than stopping the child from engaging in it. I am laughing over here at equine-assisted therapy being the only one with evidence behind it--if anything is going to fill that sensory-seeking need, riding a horse is probably it. (My partner's current special interest is horses, so it's extra funny). Unsurprisingly, most methods focus on just trying to get the kid to stop--which totally ignores that they are seeking to fulfill a sensory need, and that just stopping the behavior without filling the need is 1) cruel, and 2) doesn't work.

Communication: Increase in receptive and expressive language, use of gesture to indicate wants, eye contact and expressions are sometimes included in this too. This is basically the only measure that I do think is important in some way (excluding eye contact/expression). I see a lot of kids who have no language or gesture and they have no way to communicate their needs or wants. These are kids that don't even realize they can ask for help. They're trying to do everything on their own because they don't understand they can get other people to assist them. I think it's important to help kids realize that communication can be used to affect the world around them. I don't agree with the singular focused on speech. Often in these interventions the kid doesn't get what they want unless they use speech. Bullshit. If you can tell the kid is asking for help, give it to them. And consider that if they are struggling to learn how to use speech, then maybe you should be considering alternatives like sign language or AAC.

Also, notice that this is the one area a lot of models excel at. Do you wonder why that is? Well, you may not be aware that the typical recommendation for comprehensive autism therapy is 40 hours a week. I have yet to see a study ever isolate communication improvements to their model rather than, I don't know, the kid getting 40 hours of specialized attention a week? We know communication improves the more kids are talked to. Having a dedicated paraprofessional whose only job is to talk to your kid for 40 hours a week is gonna do something, regardless of what your model is. I've yet to see evidence that any behavioral model is effective for communication specifically because of its techniques, rather than the pure number of hours.

Cognition: This is just IQ score, which has all sorts of problems, and isn't a measure of success or outcomes in any real way. I don't have time to trawl through each study, but I also would be very curious where those gains are--if kids are just getting better verbal skills (due to the aforementioned effect on communication of 40 hrs of attention a week) and that's dragging their overall IQ up, well, that doesn't mean much.

Motor: Ability to manipulate objects, walking, running, coordination, etc. This category I don't necessarily have anything against (I got therapy so that I could stop falling over so much, I appreciate that), but it suffers from the same problem of lack of isolation. A lot of these models integrate play, and there's nothing to suggest behavioral principles necessarily improve motor skills more than just... generally practicing motor skills with kids. Throw a ball enough and you’re going to get better at it, regardless of whether you get a sticker for it.

Adaptive behavior: I would bet money that the majority of these studies are measuring adaptive behavior using the Vineland. Straight up, $20. So this means language, domestic skills (making food, safety skills), personal skills (hygiene, getting dressed), interpersonal skills, motor skills, ability to engage with the community. Same problem with the IQ measures: if kids improve on verbal, it drags the overall score up, so you’d need to see what specific adaptive skills are actually improving. I’ve never heard anyone talk about this, but I also really wonder how much parent education plays into this. I do Vinelands with parents of kids with very little adaptive skills. And you can see it on their face as they keep having to say, “No, my kid can’t do that. No, my kid can’t do that. Not that either. Or that.” Some of them know their kids are behind other kids their age; others, this is the first time they’re realizing it’s atypical that their kid can’t hold a spoon at this age. I’ve never seen any research on it, but I would be really interested in knowing how parent behavior changes after that. I can imagine at least some parents try harder to teach their kids those skills after realizing.

Also, notice there’s lots of studies with very poor quality evidence. We slap the Vineland on everything. It’s likely most of these studies were not focusing on adaptive skills, but got a fun statistically significant result somewhere on the Vineland or some other parent-report measure that they added because that’s what you do. Interpreting statistical results from measures that weren’t the focus of the study can get real messy real fast.

I'm not going to touch the school ones cause I don't do that work and probably 2 out of every 10 kids I see is in school at all.

Notice how there’s a “family well-being” outcome section, but not an “individual well-being” outcome measure.

So out of all those things measured, the ones that might really be important are communication (which may not be specifically related to behavioral principles at all) and adaptive behavior (which we have extremely poor evidence surrounding). There’s no mental health measures. There’s no quality of relationship measures (remember: this isn’t what’s being measured in the social domain). There’s no quality of life measure. These outcome measures were not decided by autistic people. They were decided by parents and professionals who want to make their kids neurotypical. It’s not about their well-being. There’s nothing to suggest these are the most important outcome measures, yet because we decided to measure these items and saw improvements, we say that’s an “evidence-based treatment.” But are we actually improving autistic people’s lives? Even if the evidence strongly suggested that all of these things are improved by behavioral intervention, we would have no way of knowing whether this comes at the cost to other areas of well-being and success. And autistic adults tell us they do. So, barring evidence to the contrary, since the autism field is so loathe to provide it, I’m going to believe autistic adults.

4. It's also frustrating in that the essential philosophies of ABA aren't... changing as quickly as the names people use. Which makes it harder, I imagine, for allistic parents with autistic kids to figure out who to trust: "stay the fuck away from ABA" is a pretty clear hard line in the sand, but it's harder when the names for different approaches keep changing.

There’s also the opposite problem: for a long time, the only thing that insurance would cover was ABA. So everyone said they were using “ABA principles” regardless of how tenuously related to traditional ABA it was. Early Start Denver Model, for example, is child-directed and focused on sharing the activity with the child by following their choices and interests. Kids are rewarded for any attempt to communicate, there is no failure. It can absolutely be problematic if your goal is for kids to mask. But I'm not sure that's inherent to the program, as the main focus is just increasing any kind of communication, even if that's just the kid pointing at the object they want. From what I’ve read, I would expect it to be at the least vastly less traumatizing than traditional ABA, and I think it could actually be a decent therapy as long as it was focused on helping the child get what they need rather than on the arbitrary “social skills” defined by neurotypicals. The main things I see targeted are receptive/expressive language, fine motor, and joint attention--that last one can be problematic, but I think the motor/language aspects aren't inherently. But I don't know enough about it to say for sure. I actually have the opportunity to get trained on it quite soon, so I’m interested to see if it can be used in an ethical and actually effective manner. But it’s framed as “based on ABA principles” which makes me uneasy; when people say that, it’s so hard to know what they actually mean. But yeah, the majority of early interventions are based on ABA—if you hear early intervention, assume at least claiming to be ABA informed. What that actually means is up in the air, but Floortime is quite close to traditional ABA as I recall.

5. I haven’t ever seen anyone talk about this (which may mean I’m just not reading/talking to the right people, which I fully acknowledge), but I’m increasingly suspecting that ABA is a very white model. It is certainly true that the traditional ABA model of in-home therapy (vs in a clinic) works very poorly for many families of color. But also, I have interviewed a lot of mothers of color, primarily black mothers, and I am consistently impressed with how flexible they are with their children, and how much they adapt to their needs rather than the other way around. I come away from these interviews with such hope. These children, whose mothers work for hours to figure out what their screaming means, who are allowed to rock and flap as much as they want, who aren’t forced into environments that overwhelm them, I believe will come into adulthood with so much less trauma. I’m not saying there aren’t white parents with this sort of flexibility and adaptive attention to their children’s needs. But the ABA model is explicitly contrary to this, and white parents always seem much more comfortable with trying to control their children’s behavior than adapting the family for the kid. And that’s something I really think should be explored further. Now that I’m actually putting this vague thought in writing, I might bring it to our community board or one of our parent groups to get their thoughts.

Yeah, that was a mess, and I might come back later with more random thoughts. But that's what I've been chewing on since yesterday. Happy to answer any specific questions people might have about the clinical world of autism; I am not experienced in the therapy aspect directly, but as I said I've been providing autism assessments for about a year. So I can definitely say I know at least one thing, maybe even two.
posted by brook horse at 7:30 PM on November 25, 2020 [24 favorites]

Did you notice that the equine assisted therapy one was also one of exactly two models in the summary table where they found work trying to evaluate community participation and quality of life? (Two models for each of those categories, with mixed evidence for both.) Really speaks to what the goals of a lot of them really are.

Re horses, too, horses (and dogs and cats and animals generally) are such a common special interest. I know so, so many autistic adults in horses or dog sports to the effect that these are hobbies that I tend to parse as approximately as autistic coded as, IDK, model train keeping. (It's just that they tend to be filled with, specifically, female and non-binary autistics.) So I wouldn't be surprised if equine assisted therapy is also particularly useful for kids who do have that as a special interest, because it provides a structured way to access an interest with adults who share that interest and are generally enthusiastic to engage with it.

I volunteered at a equine therapy barn in high school, although I don't know that the therapists who ran it knew I was also an autistic kid. I never mentioned it. But it was a good place to be, and the physical therapy the kids were doing was also supplemented by the therapist, leader, and spotter chatting with kids as we walked to the extent that kids wanted to talk, usually about the horses.

My ability to do things like kickstart myself into getting up to eat food or cope with sensory overload or summon language when I'm distrssed has not been great lately, to the extent that I've been contemplating owner-training a service dog over the last couple of months for some specific tasks. Unsurprisingly, these communities are full of Dog Autistics doing exactly that, since most program-trained autism dogs are (surprise, surprise) intended for children, and, well... lots of us get really into dog training and communication. I wonder if you could get some of the benefits of equine therapy by doing something like a 4H program based around special interests of specific kids.

I know that I spent ages 7-10 in a gifted/talented class with a super high density of autistic kids, including both my good friends at the time, and that did my social confidence and social skills an almost incalculable amount of good later on--way more than anything my parents did in an effort to get me to pass. (Which, yes, included an awful lot of scolding me and shaming me for talking "too much" about the very boring things I was interested in. For example, I got lectured a lot for talking about dogs... at the local dog park.)

Getting kids ways to engage with other people who are also super into their special interests seems like such a common sense way to help kids build social skills, and yet the reaction from allistic parents and therapists always seem to be to try to squash special interests and make kids feel vaguely shameful for caring about things too much.
posted by sciatrix at 8:53 PM on November 25, 2020 [4 favorites]

I'm so glad to see the umbrella review and the meta-analysis making it official that ABA is no good. As mentioned above, this is what autistic adults have been saying for so long. But ableism means that a lot of parents will ignore anecdotal evidence in favour of what they wish were true. Hopefully now that research evidence is piling up, more parents will refuse to use ABA methods and the funding for it will be stopped.

The other week I saw on Twitter a photo of many little toys lined up in a spiralling path, with quotes about it from parents of allistic kids, parents of autistic kids, and some professionals including an ABA group. (The tweet has a link to a full description of the image on Facebook). I was stunned by the difference between the parent groups. The ones who hadn't had much to do with autistic people didn't see anything wrong with the style of play, they thought it was colourful and expressive. The parents of autistic kids were so negative about it! I assume that parents who only care about quality of life for their autistic kids will self-select out of the kinds of groups who only see a sad mess in that photo. So the ABA-led groups will consequently be full of arseholes, and the professionals and parents will just encourage each other to force the kids to conform.

But how sad to see your kid having fun and only be worried that they're not having the right kind of fun. Life is hard enough for all of us without trying to control playtime that way.
posted by harriet vane at 4:51 AM on November 26, 2020 [4 favorites]

Right, how many "horse girls" are autistic? I was definitely one of them. I really like that 4H idea tbh, I remember little of my time in it but I remember really enjoying being able to select basically whatever my obsession was at the time and run with it.

I am also baffled at people insisting on not using special interests to connect with kids. Like, you've got a guaranteed topic that the kid will always engage in, and through which you can earn their eternal devotion by just listening them to talk about it, and you're just... not going to because they enjoy it too much?

But how sad to see your kid having fun and only be worried that they're not having the right kind of fun. Life is hard enough for all of us without trying to control playtime that way.

QFT. It's one thing to teach kids more options for play (especially when the only thing they know right now is "chew the head off Barbie and try to swallow it"), it's another to try and stop a kid from lining things up or spinning the wheels on a car because they "should" be doing something else. If it's safe and not terribly destructive, congrats! They're successfully playing.
posted by brook horse at 8:49 AM on November 26, 2020 [7 favorites]

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