[A note, December 2021: Time passes and I learn things. I hope we all do. I ran across a link to this series of posts recently, and came back to re-read them. And realized that they contain statements I no longer agree with. I have, multiple times, defended limited use of Behavior Modification methods, including ABA. Since then, I have come to understand that the risks of ABA far outweigh the potential benefits. The positive accomplishments I have seen occur in ABA therapy happened despite the use of ABA rather than because of it, and this is one of the most insidious risks of all. Children may still learn in a horrible learning environment, but their success is not an argument in favor that environment! This parallels a common misunderstanding about socioeconomic privilege. Many people use the existence of highly successful people who overcame great odds as an argument that everyone in disadvantaged situations should be able to pull themselves up by their bootstraps. Nothing could be further from the truth. A better explanation of my current beliefs about ABA can be found here https://wordpress.com/post/restlesshands42.wordpress.com/3812%5D
[This post continues a series started here]
One major way in which schools of ABA can differ is in their primary goal, their understanding of how ABA methods should be used.
1) Traditional Approach: Fighting Against Autism
Traditional ABA practitioners believe that it is inherently good for autistic children to appear, act, and communicate as “normally” (neurotypically) as possible. The gold standard here is the phrase “indistinguishable from one’s peers,” the idea that no one even has to know that this person is autistic. Many people even misunderstand this to mean that the person who attains indistinguishability has been “cured” of being autistic. That claim makes about as much sense as the notion that a person who wears a realistic wig has been cured of being bald. Sure, they may get fewer stares, but nothing about them has actually changed. And that wig might be uncomfortable enough that the person would rather not wear it.
There are innumerable studies on how to make autistic kids seem less autistic, and few (if any) on what advantages (and disadvantages!) seeming “normal” actually offers the autistic person. I won’t claim that there are no advantages– certainly, seeming normal is going to open a lot of doors in our society in terms of education, job opportunities, and social advantages. But at what cost? According to many people who have been through this therapy, the costs can outweigh the benefits by a lot (see sources list 2).
This is an area where the science is simply missing. The concept of autism as a disease or condition that needs to be cured has been so widely accepted that few researchers or other professionals have thought to challenge that fundamental assumption.
But if we look at the history of other disability rights movements, we start to see grounds for challenging the “medical model.” While many wheelchair users would like full body mobility, many others, particularly those born with their physical impairments, are very content with their life and ask only that the world be wheelchair-accessible so that they can have the same opportunities as anyone able-bodied. The majority of people born Deaf prefer to remain Deaf and use sign languages (which are complete languages, as complex and real as any spoken language, with their own culture, dialects, poetry, and so on) rather than risk partial (and painful) hearing restoration via cochlear implant (a wonderful example of what the world sounds like via implant may help non-Deaf people understand this preference).
And plenty of people make choices that others would find terribly limiting– not teaching their children multiple language, not having children at all, working in a career that is emotionally rewarding but not financially so, or the reverse, codes of dress or diet restrictions imposed by religious belief. What right, then, do we have to criticize someone’s preference for the comfort of repetitive activities? Why do we pathologize these people but not the thrill-seekers who perform dangerous stunts and participate in extreme sports?
The medical model assumes a basic “normal” state for the human body and mind, from which deviations are problematic. Closer observation of human history makes this viewpoint implausible. Genius and madness often run hand-in-hand (see Dr. Kay Jamison’s book “Touched With Fire”). People with reduced empathy are often the most successful financially (http://edition.cnn.com/2014/05/29/business/psychopath-andy-mcnab/index.html). Plenty of artistic and scientific geniuses struggled in other areas of their life, from socializing to mental health to financial management (Van Gogh and Mozart died in poverty, Einstein’s socks didn’t match, Emily Dickinson was a hermit, Ben Franklin was a womanizer… who’s “normal,” anyway?).
There are physical tradeoffs we rarely consider. Being extremely tall gives social advantages but increases the risk of heart problems. The pale skin so socially prized in many cultures around the world is an invitation to skin cancer. Sometimes we even make these choices deliberately, as when ballet dancers or boxers push their bodies to the absolute limits of human endurance, despite risking major health issues later on. We celebrate these people, but we’d also be pretty badly off if everyone in our society were an athlete or a distracted genius or a ruthless CEO. We need diversity of personality, diversity of interests, diversity of approaches to the world.
Sure, you say, but there are limits. It’s not like we actually want serial killers and people with PTSD all over the place. How do we tell when diversity is positive and when it is disruptive or undesirable? We have to look at some level of cost-benefit analysis, and I think the main relevant points to analyze regarding any condition are: Is it hurting others? and Is it making the person miserable?
Parents and professionals see autistic children struggling and assume that autism needs to be cured to alleviate that suffering. But this is often misinterpreting the actual problem, which is the mismatch between the needs of autistic people and the environments they live in. A wheelchair user isn’t going to be happy in a city full of stairs. You don’t take a bird for walks on a leash. You don’t feed dog food to a hamster. Someone with asthma might be perfectly well so long as they aren’t exposed to heavy air pollution. You don’t cure prejudice by telling the victims to stop being gay or Black or Catholic… or autistic.
But that’s exactly what traditional ABA is trying to do. Its faulty logic is: neurotypical behavior = neurotypical neurology. Standing out is bad and fitting in is good. Autistic people won’t be happy unless they learn to do the things that non-autistic people enjoy doing (such as socializing with groups of people or communicating verbally or shopping at the mall).This is the error I talked about parents making in the previous post. They want their children to be happy, of course– but they assume that the autistic person’s criteria for happiness are the same as their own.
When you start from this fundamentally flawed assumption, you are doing damage, no matter how gentle or naturalistic your methods. This school of ABA teaches “quiet hands” and “sit still” and “make eye contact.” It teaches autistic children to hide their pain and their needs, to obey without question, and to suppress their most natural ways of interacting with the world. By extension, it teaches autistic people to hate themselves. The self-hate may not surface until later, but it is an inevitable result of being taught that the way you do things naturally is always wrong.
2) Improvements on the Traditional Model: Autism is not the Enemy
Some more modern schools have moved beyond this, at least in part. They understand the basics of sensory needs. They argue for kids to get accommodations, allow them to stim, accept multiple forms of communication, and don’t focus primarily on suppressing autistic behavior. They do still, however, tend to set goals through a neurotypical lens, which often involves a lot of incorrect assumptions about how the autistic mind works. Ultimately, much of their work is counter-productive, although a lot less unpleasant for the child than the previous version.
An example of this is when a therapist sets the goal of having a child look up and orient towards the speaker when her name is called, so that she will attend to safety instructions like being called back before she runs into the street. The underlying goal isn’t a bad one– get the child attend to stimuli that are likely to be important for their safety– but the notion that an autistic child can reliably indicate attention by looking at the speaker needs to be re-examined.
Another example: a reasonable educational goal is set for the child, like being able to do arithmetic. But the therapist assumes that wrong answers result from a failure to understand, not from dyspraxia that leads the child to point at the wrong answer unintentionally. There are many self-reports from autistic people explaining that this is a common occurrence for them, but researchers have failed to take this into account when developing treatment protocols. The result is a lot of time wasted attempting to “teach” a child information they already know, a lot of frustration and anxiety on the part of the child, and a serious underestimation of the child’s intelligence or academic potential.
Too often, ABA practitioners in this category work at getting kids to do the wrong things for the right reasons, taking time and energy away from more important learning. Unfortunately, the vast majority of research into autism “interventions” and “treatments” is based on assumptions like these, if not the even worse traditional beliefs mentioned above.
3) Getting It Right: Supporting the Autistic Experience
The rare wonderful ABA folks have a philosophy more like that of most occupational therapists. They believe that their primary job is to give the child a set of tools that are useful to that child — not to make them less autistic, but to help them to function better as an autistic person. They want the child to feel empowered and competent. They use the methods of ABA to teach communication skills, self-care skills, and skills that increase a child’s independence rather than stifling it. They also focus a lot on adapting the behavior of other family members to be more supportive toward the autistic child.
A therapist in one such program said to me that the philosophy behind their sessions is “form follows function.” This means that they use, in my opinion, the appropriate interpretation of the “Analysis” part of ABA — they try to figure out what the child needs or is trying to accomplish, and then seek to teach the child an effective and reliable way of reaching that goal (a way, additionally, that doesn’t involve anyone– including the child– getting hurt or being made miserable). This same therapist told me that the very first thing they teach any child is how to ask for a break– “and then, if the kid wants to take a break 200 times in a 2 hour session, that’s fine, we let him take all those breaks. We’ll work on the rest later. The point is, he’s learned something useful.”
I’m not saying that these people are flawless– they do fall prey to some of the same erroneous assumptions about what it means for an autistic child to show progress– but most of what they do helps more than it hurts. Sadly, they are in the minority.
It can, of course, be difficult to define the line between helping a person grow and changing who they are. When are you helping a child by having high expectations for them versus pushing them to do something they truly can’t manage? How do you balance respecting a child’s needs and preferences with teaching them the necessary amount of patience, self-control, ability to face disappointment, and so on? These questions are much harder to answer empirically, and honestly, we’ll probably never have the perfect answer, especially since it’s bound to be different for every individual. But we do know that a child has to feel safe before they can focus on learning. That a child who is in pain (physical or emotional) is unable to perform at their best. And that every person, regardless of ability, needs to feel respected and heard.
Source list 2 (in no particular order):
– “The major false premise, common to much autism research, is that autism is a “disorder” rather than a difference. When a researcher starts from that premise, they will be looking for “causes” of the “defect” rather than for an understanding of the source, function, and consequences of the difference.” – This article also notes some other specific flaws in most autism research. http://www.mfw.us/blog/2014/03/09/cart-before-the-horse-research-multisensory-integration-in-autism/#sthash.DHlX7js7.dpuf
– “I was treated with mostly kindness, but the therapists could not see beyond their training. I learn quickly, but am not able to reply with words that sound right to another.
Worry becomes everyone’s focus.
Real learning happens when no one notices.
The goals waste away.
Tender feelings do not hurt, but are not helpful because they cannot soothe wounds of being constantly underestimated.” – 12-year-old Emma Zurcher-Long, on her experience of ABA therapy at ages 2 & 3. http://emmashopebook.com/2014/02/07/no-aba/
– “A small but growing number of multidisciplinary researchers are challenging the autistic stereotype and finding, in many cases, that our knowledge of autism has been built upon unsupportable ideas about normality, intelligence, sociality, eye contact, empathy, language development, child development, and communication.” Excellent reading here, with a lot of scientific references. Thoroughly debunks several common assumptions, including the idea that eye contact equals attention, even in neurotypicals. http://karlamclaren.com/research-based-approaches-to-autistic-ways-of-learning/
– “Taking away things like hand flapping or spinning is not done to help the child. It is done because the people around the child are uncomfortable with or embarrassed by those behaviors. But those are coping behaviors for the child. It is very important to question why a child engages in the behaviors they do. It is very wrong to seek to train away those behaviors without understanding that they are the child’s means of self-regulation. When considering whether you have made a wise choice in what therapy you are providing your child or not, you want to always remember a few cardinal rules: behavior is communication and/or a means of self-regulation. Communication is more important than speech. Human connection is more important than forced eye contact. Trust is easy to shatter and painfully difficult to re-build. It is more important for a child to be comfortable and functional than to “look normal.”
Work on things like anxiety and sensory issues first. Work on getting better sleep (both you and your child). Things like eye contact can come later, much later, and only if your child is comfortable with them. There are work-arounds. Lots of people fake eye contact. Lots of people have good lives with minimal or no eye contact. But forcing a child to do something that is deeply painful and distressing for no reason other than to make them look more normal is not just unnecessary, it is cruel.” This source was also quoted in a previous section. https://unstrangemind.wordpress.com/2014/10/07/aba/
– “Being declared indistinguishable from peers does not do any favors to the child, except maybe ending the hours and hours of discrete trial training. Being academically “on track” does not magically confer socialization or executive function abilities….
This also essentially punishes Autistics for learning coping skills. They might get you through the lower grades, maybe even into high school or young adulthood if circumstances line up, but there will come a time when scripts and constant vigilance are not enough. There is always too much to process, too much to juggle, more and more things to do and ever increasing demands. Putting a veneer of “indistinguishability” on top of that is just setting us up for burnout. “ – This is part of a wonderful series of posts about the downsides of “indistinguishability.” http://timetolisten.blogspot.com/2013/09/indistinguishable-from-peers.html
– “...even when people know eye contact can be painful and that we will not pick up much social information, we are STILL expected to perform the feat for the social comfort of others.” – Also quoted earlier. http://ollibean.com/2014/10/28/autism-and-eye-contact/#sthash.iSXIsfKU.dpuf”
– “The case I want to make against “quiet hands” is that in addition to being emotionally damaging, it’s cognitively counterproductive. Think back to the experiment where the people who were told to resist eating chocolate gave up more easily on solving puzzles. Substitute stimming for chocolate and learning long division for solving puzzles. Add in the fact that autistic people have impaired executive function to begin with, making inhibition of actions more challenging, and you can see why asking a child to resist stimming is counterproductive if you’d also like them to learn a new skill.” Excellent and clear explanation, with references. http://musingsofanaspie.com/2013/06/18/a-cognitive-defense-of-stimming-or-why-quiet-hands-makes-math-harder/
– “I think “compliance” is a lazy shortcut term for something more important or more measurable or more relevant. “He was compliant today.” What does that mean? That he did what he was told to do because his spirit was broken and he went through the motions? That she did what she was asked to do because she understood why she needed to do something? That he was guided toward possible options and that staff and support folks helped him reach decent decisions about what to do or not to do?” http://blog.dadsofdisability.com/compliance/#.U2qlX_ldWX9
– “I need to silence my most reliable way of gathering, processing, and expressing information, I need to put more effort into controlling and deadening and reducing and removing myself second-by-second than you could ever even conceive, I need to have quiet hands, because until I move 97% of the way in your direction you can’t even see that’s there’s a 3% for you to move towards me.” Quoted many times before. http://juststimming.wordpress.com/2011/10/05/quiet-hands/
– ““It frustrates me to look back at how my ABA teachers drilled me endlessly in basic skills only to say it wasn’t mastered because I had inaccurate pointing. I knew everything so easily. I was bored to tears but my apraxic hands would go to the wrong card so they thought I didn’t know “book” or “tree”. I did it over and over. It was the worst. The assumption that people don’t understand if they reply incorrectly is a huge misconception. ABA is built on this erroneous premise.”” – Ido Kedar, quoted at http://emmashopebook.com/2013/11/05/more-on-aba/