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And yet again, ABA: what’s wrong with it, and what can be changed

February 19, 2016 Leave a comment

Some thoughts that keep floating around in my mind lately, particularly in response to conversations I see on social media:

I’ve said some positive things in the past about certain versions and applications of ABA. While I’m not retracting those statements, I feel I need to point out a few things.

1. Apparently, I have been privileged to meet some truly unusual people in the field, and some companies that are so far from anything Lovaas envisioned that I don’t think he’d recognize them as ABA at all. Yes, they are behaviorism-based programs intended to alter a person’s behavior, and I know some people are categorically against this. But, honestly, all good parenting has to include some similar method for steering a child towards better and more adult behavior: incrementally, calmly, and consistently.

2. The examples I’ve seen of ideal ABA use are almost all with children whose primary diagnosis is not autism. I am realizing more and more how important this factor is. Kids who have a global developmental delay for some other reason (such as Down’s syndrome, cerebral palsy, or a chromosomal disorder) are often given a secondary diagnosis of autism based primarily on language delay and a bit of stimming, and I suspect they are mostly given the diagnosis in order to qualify for getting ABA covered by their insurance. And, because a lot of these kids are not really, or at least not very, autistic, the goals of an ABA program are much more in line with a developmental trajectory that makes sense for them. Which is, in short, a lot more like a neurotypical developmental trajectory, but slower and with modifications, than it is like the developmental trajectory of most autistic people.

So, yet again, what distinguishes “good ABA” from classic ABA? It’s not the lack of aversives (what most parents call “punishment”). It’s not the fact that they no longer believe in stopping kids from stimming (although that is definitely a necessary step in the right direction!).

Here are the major factors I’ve observed.

1. Good ABA consists of sessions that are no more than 1-2 hours a day, with multiple breaks, and not every day. This is a way to guarantee that even if traumatic factors remain, they are not the entirety of that child’s world. It also gives you the chance to see whether or not sessions are making your kid feel more stressed or not.

2. Good programs focus on goals that are genuinely useful. Not eye contact and writing your name, but things like:
– the ability to communicate reliably through some method (but not insisting on a single form of communication)
– safety skills like responding to the word “stop!”
– self-care skills like hand-washing, and, for older kids, independence skills like preparing food.
This alone is not enough to make a program non-abusive, but again, it’s an important place to start. Enduring something that the kid dislikes or finds uncomfortable may be a goal at times, but only when that something is hard to avoid/accommodate any other way.

3. Not pushing past a child’s tolerance level. Good programs teach and respect the use of the word “no.” They back off when they see a child becoming frustrated with a task. They don’t use physical force against a kid (yes, there are actually companies that have a “never restrain a client” rule). In short, they allow the kid some measure of control, which is probably the most critical factor in countering the abusiveness of traditional ABA. Obviously, there is still a power dynamic involved, and kids are still asked to do things they don’t like, but that’s true of almost all interactions between kids and adults. There is a big difference between getting a kid to follow a lot of the rules that other kids have to follow and demanding total, unquestioning obedience. I’ve certainly seen “ABA” sessions that involve more input from the kid than most classroom situations.

By now, anyone who endured classic ABA (or something close to it) is probably shaking their head, rolling their eyes, and/or asking if this is even remotely possible within a behavioral therapy setting. I genuinely believe that it is. Whether it should still be called ABA is a totally different issue, and a highly contentious one at that.

I’ve certainly witnessed sessions that met all these criteria. And, fortunately, very few that failed entirely on all these counts. Most commonly, though, I see either problematic methods with sensible goals (which is a hard one for me to know what to think about), or acceptable methodology with questionable goals.

Does meeting all these criteria make “ABA” perfect? No. Is there still room for abuse? Of course. There is also significant potential for abuse (intended or not) in any parenting situation, educational setting, and interaction with other children (in fact, I think kids are pretty much guaranteed to traumatize one another– have any of us, autistic or not, truly never met a bully, had a traitorous friend, or been mocked by our peers? I’d be very surprised.)

And there are other issues, including the stigma of being in therapy at all (although many programs are now so play-based and naturalistic that younger kids probably wouldn’t even identify them as anything other than having a slightly weird babysitter…). There is the fact that ABA practitioners don’t tend to respect the intelligence of their clients even when they do respect things like their sensory needs. But that, too, is by no means limited to ABA people– I’ve seen enough teachers use that high-pitched sing-song voice and appalling phrasing with neurotypical kids (the primary difference may, in fact, be that autistic kids are likely pick up on the fact that this is insulting far earlier than NT ones do). At least the good ones practice what they preach. They wait patiently, they take turns, they say please and thank you to their clients. How many of them mean it is another matter. But at least they understand that you have to show respectful behavior in order to expect respectful behavior, even if you’re only giving lip service. I know a few parents who could stand to learn that lesson

There’s the fact that repetition is not the best way for most autistic kids to learn, especially when it comes to intellectual skills (it may be helpful for procedural memory and building good habits, though). And, while I’ve met plenty of ABA folks who are genuinely fond of their clients, it is still very rare to find anyone in the field who truly believes that being autistic is not only OK but something to be appreciated.

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Open Letter to ABA Folks: On the Word “No.”

September 27, 2014 4 comments

If you have not done so, please read the introduction to this letter series before continuing: https://restlesshands42.wordpress.com/2014/09/27/an-open-letter-to-aba-folks-intro/

Overview of this letter:

Section 1: About the word “no” and why it is important

Section 2: Observed ABA practices in teaching “no” and why they are problematic

Section 3: Brief recap of section 2

Section 4: Practical suggestions for addressing these issues in ABA sessions

***

Section 1: About the word “no” and why it is important

“NO.” It’s one of our most powerful words. It’s one of the first words children learn that isn’t a noun. The “No!” phase, also known as the “Terrible Two’s,” is a critical part of human psychological development. In learning to voice a refusal, toddlers learn a huge amount about the world and themselves. They learn that they are individuals, with desires and preferences that are not always the same as those of their caregivers. They learn that they are able to express this difference of opinion in a way that others understand. And most critically they learn that, by voicing this opinion, they sometimes have the ability to change what happens to them. Anyone who’s ever had a toddler knows that sometimes they just say “no” to everything, out of sheer joy at having the power to refuse.

A major feature of autism is a difference in the way autistic and non-autistic people learn to communicate. Autistic children often take much longer than their non-autistic peers to develop speech or other formal communication methods (such as sign-language, PECS, or an electronic device).

Autism therapy often focuses on developing the ability to indicate the word “no,” for good reasons. Children who can’t use some recognizable form of “no” are a lot less happy than those who can tell their caregivers when they dislike something (a food, a place, an activity, etc.). Also, given no other means to express “no,” most children will eventually resort to tantrums or violence as a means of indicating displeasure. This can be physically and emotionally dangerous for both caregiver and child.

***

Section 2: Observed ABA practices in teaching “no” and why they are problematic

Ok, I assume you didn’t really need any convincing on those points. Now, let’s talk about how ABA teaches “no.” I’d like you to imagine a scenario for me. The vast majority of ABA folks are neurotypical (non-autistic), so I assume none of you have any difficulties with imagining.

Let’s say you’ve moved to another country, one whose language is particularly difficult for you to learn and use. Perhaps it has very different speech sounds than your native language, or another mode of communication entirely (humming through your nose, for example, or doing complicated dance steps).

So someone, or a group of people, is assigned to teach you the basic phrases and words you need to know in this language. The way they decide to teach you “No” (or maybe “stop”) is the following:

You’re stuck in a room with them, and they do things to you that you hate. They pinch you, or drag their nails down a chalkboard, or grab your personal belongings away from you, and they keep doing this until you say “no” to their satisfaction. Even if it’s perfectly clear what you’re trying to say, if you pronounce it just a little bit wrong, or stumble on one of those dance steps, they ignore you until you get it right. Sometimes, you did get it right, but they’re busy making notes or talking to someone else, and you have to do it again.

When you do get it right, they pat you on the head, say “good job,” and let you do something pleasant for a few minutes. Then they start up again. If you put your hands over your ears to block that horrible screeching noise, they hold your hands down. If you try to object in your own language, your objection is ignored. If you get fed up and scream or burst into tears or punch someone (and who wouldn’t, after enough of this?), or even just sit down on the floor and refuse to participate any longer, you get marked down for misbehaving. Maybe, if they’re nice and sensible, they start giving you longer breaks or do something that you don’t hate quite as much. Not much of a consolation, is it?

So maybe, yes, you will learn to say “no” in this new language. Maybe you’ll even learn it faster, in self-defense, than you would have otherwise. But what will you think about the people teaching you? Will you respect them, or just fear them? More importantly, will you believe that they respect you?

In addition, imagine that you’re a child, with little experience of the world. Your own beloved parents tell you that these teachers are here to help you, that you should obey them and try to please them. They call you their “friend,” and unless someone has already explained otherwise, you probably get it into your head that friends are people who are allowed to push you around like this.

(How many of you had a friend or sibling who took advantage of your trust or your admiration when you were little? They made you do something you hated, or got you in trouble for something they did, or tormented you in some other way… Do you remember how much it hurt? I do.)

You might even start thinking there’s something wrong with you. After all, these people are trying to help you, right? They like you and care about you and are experts. So maybe there’s something wrong with YOU for hating the lessons so much. You wonder if you’re too sensitive, too slow a learner, or just a bad person who isn’t worthy of more respect and kindness.

(I’m sure you remember feeling that way sometimes, too).

Or you start thinking it’s ok to make other people miserable, and treat your own friends this way. And then you probably get labeled “aggressive” or “antisocial” and get taken our of you classroom to go have more therapy.

***

Section 3: Brief recap of section 2

If all that made your head spin, let’s simplify it.

Can ABA therapy teach a kid how to say “no”? Sure.

Is it the fastest way? Maybe.

Is it worth the emotional frustration, destruction of trust, mixed messages about what “teaching” and “helping” and “caring” mean, and possible long-term hostility that can result? You tell me.

***

Section 4: Practical suggestions for addressing these issues in ABA sessions

OK, criticism only goes so far. I’m not here to make you feel bad; I’m here to help your jobs better. The following are my suggestions for teaching “no” or “stop” via ABA with minimal trauma.

1) Don’t do too much in one day. 1-3 trials per session, no more. Seriously. It may take longer, but it’s worth the wait. You can tell parents they are much less likely to see tantrums, aggression, and meltdowns after sessions if this is done slowly. (Technical note: whatever stimulus you use to elicit a “no” behavior is also going to be perceived as a punishment for whatever the child’s antecedent behavior was. Less technically, if you keep doing something a child hates, they’re going to wonder what they did first to make you do that to them. This can mess up other aspects of the session.)

2) Don’t give praise or additional reinforcement (rewards). The best, in fact the ONLY valid reinforcement for saying “no” is to have the other person respect that request. Don’t say “good job,” because expressing your needs isn’t a job or a task, it’s an essential human activity. Don’t make it less meaningful by assigning it the same status as answering an informational question correctly. I DO encourage you to (sincerely!) apologize to the child for doing something they disliked, or say something like “thank you for letting me know that you want me to stop” (especially if the word is replacing violent behavior!)

3) As soon as the child has a response that is recognizable as “no,” respect it. Respect it whenever possible. If it can’t be respected in a given instance, verbally acknowledge it (“I understand that you don’t like ____” — this also helps clarify the referent of the “no”) and explain why you are not going to stop just yet, or why they have to do the thing they don’t want to despite protesting (you’d do this with a typical child, right? Stop thinking of your clients as that different. They have plenty of typical thoughts and feelings– they just don’t express them the same way others do). You can use “no” as an opportunity for further engagement– offer alternatives for the child to pick (“Would you rather we did ___?”), or bargain with them (e.g. “We can stop in five minutes if you keep working with me right now”). Encourage the family to do this too, especially respecting the use of “no” as much as possible. This is crucial to maintenance. “No” will only become a true part of a child’s functional vocabulary if it is generally effective in eliciting negative reinforcement (i.e., it gets the child the result they are requesting).

4) If you need to shape the physical pronunciation of “no,” “stop,” and similar terms, do that later, separately, and via DTT that is reinforced by something utterly neutral to the situation. Don’t make correct pronunciation a high-stakes task. Again, less technically: if the child needs to say “no,” more clearly, have them practice mimicking your speech (with a bunch of words, ideally), in a game-like setting where they win stickers or candy or tokens for better pronunciation. That lets them practice saying the word more clearly without having to worry that their objections will be ignored if they aren’t performed perfectly.

An Open Letter to ABA Folks: Introduction

September 27, 2014 Leave a comment

Dear ABA therapists and technicians,

I’ve met a good number of you over the years. The majority of you love the kids you work with, and want to do well by them. So, for the sake of those children, please listen to some critiques of your methods. Before I start:

1) I do not categorically stand against the study of ABA, or its therapeutic application. I merely have a lot of specific concerns– concerns that come both from my own observations and from listening to dozens of autistic* teens and adults who have experienced these therapies first hand. I’m happy to give you a list of references (a good place to start is: http://jack-not-jacque.tumblr.com/post/48645978990/so-you-want-to-work-with-autistic-kids-primer).

2) I have a degree in Psychology from one of America’s top research institutions, and enough research experience to really understand how much we know– and don’t know!– about ABA and autism, given the studies that have been done. While my undergraduate focus and research were in neuropsychology, I did take classes in behaviorism as well. However, I try to avoid using too much jargon, in part to make these essays accessible to the wider public, and in part because not all programs use the terms exactly the same way.

3) If your response to anything I write is “Well, I/my program would never do THAT,” you are missing the point. Everything I discuss is being done somewhere, by someone, to autistic children and teens. If you agree that ANY of it is problematic, don’t waste your energy worrying what people think of you — worry about the suffering of all the kids who aren’t your clients. If you truly are one of the good ones, get back out there and fight against the rest. Stand up for the rights of those who have less power than you do. Talk to your supervisors and co-workers. Write articles. Bring up these issues whenever you meet autism researchers. Educate your clients’ parents. Send letters to your local editors. Talk to the teachers and counselors and psychiatrists and medical doctors who work with your clients. Help them understand just how badly some of these kids have been traumatized, and what they can do to minimize further damage.

Thank you. Together, we can do what I believe we all want to do: make a significant positive difference in the lives of autistic people.

***

* While some disability groups prefer person-first language (e.g. “person with autism”), the majority of people I have met who are actually on the spectrum prefer to term “autistic.” The term also encompasses those who have been diagnosed with Aspergers Syndrome and PDD-NOS. In general, whenever speaking to/about an individual, please use the terminology they prefer.

Furthur nuances of ABA-based therapies

I’ve been seeing a lot of discussion online lately about ABA-based therapies.*

Can these therapies ever be done right? How can you tell when a therapy is damaging even though it is play-based, uses no aversives, and doesn’t seem unpleasant for the child undergoing it? Are stressful therapies ok in small doses?

Most people, including most of the ABA therapists I’ve met, agree that one of the most important things for any person to learn is how to say “No,” verbally or not. I’d like to describe two different ways I’ve seen an ABA technician work on this with an autistic client. On paper, the two ABA programs sound about the same (Note: (the people who perform the “therapy” sessions with the kids are trained by private companies and not licensed as healthcare providers or educators in any other way, to the best of my knowledge. Program supervisors generally require some form of degree in psychology). Similar stated goals and methods. But observing the techs in action reveals important differences.

Case 1:

The client is 11, minimally verbal (uses single words spontaneously and short sentences with prompting). Therapy consists of 2-hour sessions twice a week after school.

The tech treats the lesson plan casually. She and I and the client lounge on the floor of the living room, or go about the house working on various skills, most of them skills that are often taught by an OT or PT (dressing, using the toilet, preparing to go for a walk, eating a meal). At one point, the tech leans over and tickles the client lightly. The client pulls away a little, and the tech immediately prompts, in a friendly tone of voice as though giving advice to a friend, “You know, you can say ‘I don’t like that,” or ‘please stop,” or…”
“Stop, please,” says the client. The tech immediately stops, and smiles at the client,
“Thank you for telling me,” she answers.
This kind of exchange happens maybe once or twice a week.

Case 2:

The client is 7, mostly nonverbal, and has 2 hour sessions several times per week. The client is required to sit at a desk for most of the session, although some activities are done while sitting on the floor instead.

The client is engaging in a favorite activity at the table, mixing colors of play-doh together. The tech reaches over into the activity space, deliberately interrupting. The client pushes her hand away, and she ignores this, putting her hand back in the way so the client can’t continue playing. “nuh,” the child says quietly, sounding annoyed, not looking up, still intent on the activity.
“Stop,” the tech corrects, prompting him to use the specific word that has been pre-determined in his program as a “goal.”
“Stah,” mimics the client. The tech withdraws her hand, nods as if in satisfaction, and makes marks on her tally sheet, obviously grading the child’s performance. This process is repeated multiple times per session.

Case 1 isn’t perfect, but I think it’s a good shot at managing a necessary evil in a relatively decent way (the necessary evil being that, in order to make sure a kid knows how to object to things reliably, you pretty much have to provide or at least allow something they dislike for them to object to). The tech didn’t push, didn’t insist on a specific response, didn’t judge… just offered an alternative. The client was treated as a human being.

Case 2 makes me feel sick to my stomach. There’s no camaraderie, no politeness, no explanation, and not even a pretense of respect for the client’s wishes. Just training, and frustration. This is more “pure” ABA– no distractions, no additional variables, no unplanned interaction between client and therapist. But what upset me most was that the tech seemed to care only about reaching the objective, having the client perform to a pre-set standard, and not about whether or not the client was experiencing and understanding the power and value of being able to make a request and have it respected. There seemed to be no acknowledgement of the fact that the goal of the work (and the only possible acceptable reason or excuse for these therapies at all) is to provide the client with a skill that is, at least to some degree, useful to them. Communication that will be understood by others, no matter the format, is one such goal, and I think worth even some pain, though of course it should be the minimum of pain possible.

Missing from both is another crucial marker of respect: apologizing to the client for doing something they disliked. And, in a larger critique, it is very problematic that, in this world, someone saying “please stop” is more likely to have their needs respected than someone who simply pulls away, and someone who pushes someone else away is more likely to be labeled as “aggressive” than “self-advocating.” That needs to change. In the meantime, there are better and worse ways to teach someone how to lodge a verbal protest. I got to see both.

* Note: there’s a lot of confusion about terminology, especially in America, where anything that can plausibly, or even implausibly, be labeled “ABA” gets the title so as to be covered by insurance companies. The briefest overview I can provide is that Applied Behavior Analysis (ABA), a particular subdiscipline of behavioral psychology, has given rise to a wide range of “interventions” and “therapies.” The classic ABA therapy is an aggressive and rigorous program of DTT, based on the work of Lovaas, who wanted to make autistic people become, or at least appear, “normal”… and cure men who acted in any way effeminate or homosexual. Most autistic people consider this to be despicable at best and outright psychological torture at worst. More modern approaches such as PRT now apply behavioral principles in ways that are gentler, more flexible, more naturalistic, and more enjoyable for the client… but their goals are often (though not always) still based on the premise that becoming more “normal” in various ways is a reasonable goal for autistic children. Most autistic self-advocates and their supporters are deeply uncomfortable with this notion, too.