Home > Autism, Disability Rights, Psychology, Philosophy, and Other Deep Thoughts > Interconnectedness, science, ABA, and autism

Interconnectedness, science, ABA, and autism

[Quick amendment: the term “ABA therapy” actually refers to a fairly broad category of therapies based on the science of Applied Behavior Analysis, a branch of Behavioral Psychology. Because so many different approaches and programs are referred to as ABA, there is a good deal of confusion about the term within both the autistic community and the clinical practice. Generally, the ABA-based programs designed for use with autistic children seek to gradually alter specific behaviors (including actions that we ordinarily call other things, such as speech or eating), relying heavily on externally provided reinforcements, which are things that make a person more likely to repeat an action. A very simplified example: if you give a chocolate-loving child an M&M every time they say “hello,” the action of saying “hello” is likely to become a lot more frequent!]

[Second edit: Unfortunately, programs listed as “ABA” consist of everything from abusively rigorous training that teaches autistic children to suppress being themselves (classic/Lovaas-style ABA)… to play-based activities (such as Floortime and PRT) that focus primarily on the child being able to communicate their needs to their caregivers. Most “ABA”, even more unfortunately, falls somewhere between those two extremes, and it can be very difficult to untangle which methods are most problematic, and how, at first glance.]

***

I was talking with an ABA supervisor the other day, and she said something along the lines of “We know ABA works, and it works for just about everyone. We know because we’ve seen it.” And yes, ABA is a way to teach autistic children (or anyone else) certain skills. We’ve not only seen it, we’ve measured it and charted it and pinned it to the walls of innumerable institutions. But that doesn’t tell the whole story.

Because here’s the thing about science, and I say this as someone who loves science and has worked in research: In general, you’re only going to find what you’re looking for. And the ideas that are easily tested and easily measured, with results that can be easily quantified, are a lot easier to support than some broader, deeper, more complex ideas– the kind that are often critical to humanity. There’s a reason why most physics or biology books generally agree with one another, while most books on ethics or childrearing or religion do not.

Some things you can demonstrate fairly clearly with lab equipment and numbers. Others you can’t. This puts the quantifiable ones at a significant advantage in our culture. But does that mean they are better ideas?

***

ABA is the “standard” therapy for autistic children, because it provides results that are quick and quantifiable. Any observer, even an untrained one, can see the “progress.” The child learns to sit quietly for 3 minutes, learns to use a spoon, learns to ennunciate the word “cat” when presented with an image or the written word, learns to give a “high-5,” learns to request foods or other desired items by pointing to pictures, learns to say “I need a break” instead of tantruming, learns to say “nice to meet you” when introduced to strangers, learns to match a picture of a bed to a picture of a bedroom rather than a car.

Many of these are useful skills, yes. Many of them can be learned this way, yes. I do not object entirely to ABA as a concept (note that I am talking modern ABA– there are programs that use no aversives, include naturalistic settings, and do not rely entirely on DTT– not classic Lovaas-style ABA). ABA has its place. But that’s not the whole story.

[Another Edit: When I say that ABA “has its place,” 1) I am not necessarily recommending it for all autistic children. If anything, I think it should be more often offered to non-autistic children… and adults. And anyone who is thinking about adding it to their autistic kid’s schedule should speak to autistic adults who have had ABA therapy and learn what things absolutely need to be avoided in a therapist/program. 2) I’m talking about a few hours a week, maximum– the same amount of time you’d put your kids through any other stressful learning program like music lessons, advanced subject tutoring, or a very competitve sports program.]

***

By contrast, I would like to offer here the bane of many hard scientists: the anecdotal, subjective story (if it makes you feel better, you can call it a case-study). The author writes:

I knew how to read long before I could speak. There were no responses I made that would have given anyone any indications that I was reading. I even tore the pages and ate them because I wanted to keep the words. There was no way that anyone could tell that I was reading or not. I did not react or respond appropriately because I could not…

…Once I suffered Guillain Barre syndrome after an allergic reaction to a flu shot, and was paralyzed for a time. I couldn’t bat a fly on my face. My mom insisted on a homebound teacher, although I couldn’t even breath on my own and was unresponsive. The teacher came by and gave me an education that would have been the same as any other student my age. I could not respond. Did not respond. He could have been instructing the wall paper for all the indicative responses I gave. I was given tests even. He read them out and read out the multiple choice answers as well, going on to the next question without ever receiving any sort of reply.

Eventually he was gone. Never knowing he ever made a difference, perhaps wondering if it was just two hours a day of talking to himself. Actually he did some of this. Talking absently as if to no one was listening. Going through history and science and literature. But my mind drew pictures taking me to places he described. Discovering sciences. Such subjects that were never before wasted on me.

It was the best education I received. Without the teacher ever knowing that it meant anything at all. Like giving an education to someone in a coma never knowing if the other person is receiving the intended message….

…It was years later when I could express the remembered lessons.

 

Please reread that final sentence. Read it several times. Because it’s really important. And it’s not an isolated case, either. Time and again, autistic people report that, as children, they absorbed vast quantities of information that they could not express until much later. This is an important story. For the more data-driven among you, I refer you to the following scholarly articles: http://www.traininautism.com/Mottron/2007%20Dawson%20psychological%20science.pdf and http://www.epubbud.com/read.php?g=ET5HW22S&p=1.

My point is: just because we can prove that ABA “works” does not mean that it is the optimal or ideal strategy. It is, however, much easier to test and demonstrate the effectiveness of than, for example, lecturing a child on subjects to which they show no response or give incorrect answers for years before they are finally able to demonstrate their mastery.

***

A more important question than “is ABA optimal?” may be “what do we risk losing by using it as the primary method of teaching autistic children?” One obvious failing is that it takes up a lot of time– time (as well as effort and energy on the child’s part) that autistic students could use studying material more appropriate to their actual intelligence. Another consequence we can postulate is that such students may come to dislike studying or school environments, or may stop believing in their own intelligence (see self-fulfilling prophecy/Expectancy Effect). It is also, I suspect, common for ABA therapists, who rely on the ABA methods to assess skills and learning, to underestimate the intelligence and competence of their clients. The resulting inappropriate evaluations of children’s potentials may then lead to these children not being given the opportunities, responsibilities, freedoms, and academic access they need and deserve to move forward in life towards independent adulthood.

Are you worried yet?

ABA also fails to take into account that autistic children often show intelligence in quirky ways, and find creative workarounds for areas where they struggle. An ABA evaluation of language competence would likely be unimpressed by the child who barely ever speaks, but uses the word “spoon” to ask to go to Wendy’s for his favorite treat– eating a chocolate “frosty” (example adapted from a true story). The language is functional in that his family understand it, but is ultimately considered incorrect and won’t do him much good with strangers.

Perhaps you agree that it’s better for him to use the proper word, and perhaps it is. It certainly will make his life easier in certain ways if his language usage is limited to what the majority of his listeners can understand easily. But if we focus narrowly on teaching him to say only what others understand, would we stifle the incredibly creative and poetic language usage so many nonspeaking autistics develop? Emma’s term “motorcycle bubbles” (meaning fireworks) comes to mind, as does Tito Mukhopadhyay’s breathtaking metaphoric explanation for some of his unruly actions– “Thinking of apples and doing bananas” (quoted in the problematic memoir “Strange Son” by Portia Iversen).  The step before that might have been answering “apples and bananas” to the question “why did you throw that?”… a response which any ABA therapist would correct to something like “I was upset,” which in no way supports and encourages the child who is trying to make an important point.

***

Human beings are complex, chaotic systems, with a lot of interconnected bits that we don’t understand very well. Sure, you can look at the short-term and most obvious effects of something like a specific teaching strategy, but the more global, wholistic impact is harder to assess. A certain method of teaching history might produce high SAT scores, but ultimately result in a student who hates studying history, or becomes worse at critical thinking, or becomes obsessed with politics, or becomes embittered about humanity.

Perhaps this sounds a little absurd, but I’m really not reaching here. You can teach a child to be very obedient, which looks like a good thing when they eat their vegetables and do their homework, but then perhaps they become a rebellious teen and engage in dangerous behaviors, or get into an abusive relationship because they have lost the ability to say No. Yes, I’ve seen these things happen many times. Can I prove a causal link? No. Have I seen enough cases to make me worry about the most well-behaved children, the ones who never protest? Yes. You pull one string and find it connected to an entire spiderweb, a constellation of thoughts and traits and feelings.

***

Let me leave you with one last attempt to change your mind. I’ve used this metaphor before, because I feel it is apt.

There was a time, not that terribly long ago, when Deaf children in the United States were taught lip-reading and speech, and the usage of any kind of sign language was discouraged at best and heavily punished at worst. The prevailing notion was that this was for the children’s own good: sign language would make them stand out, wouldn’t be comprehensible to most other people, and would therefore prevent them from ever being able to fit into society. I suspect a lot of earnest research went into the best ways to teach lip-reading and speech to the Deaf– and it was a laborious, difficult process for both student and teacher which rarely if ever produced perfect results. Some of the best students, of course, succeeded marvelously and went far in life, and most learned at least something, both of which must have seemed to justify the continued practice… as well as reinforcing a lower opinion of those who did not succeed as well.

I’m sure it took a major shift in the thinking of authorities to finally realize that Deaf people who were permitted to use their own languages could do and think and express and learn so very much more. It would have been nice if they had started out by listening to Helen Keller (yes, amazingly, she did learn to speak, but only after she had learned tactile ASL), or an island community where almost everyone was bilingual in spoken and signed language. Maybe then they could have envisioned a future which included a Gallaudet University that graduates thousands of students, the beauty of Deaf-Jam poetry, and the realization that infants can sign long before they can talk.

I’m glad we got to that future. I hope the autism authorities will start listening more seriously to the autistic community, so that autistic children can look forward to a brighter future of their own.

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  1. PK
    June 5, 2014 at 6:23 am

    Thank you for this. And as an NT woman who grew up in an autocratic family where “no” was not an option, and who did experience “mild inappropriate” encounters as a child, and an emotionally abusive relationship (my first REAL relationship) as a young adult, I completely agree with you.

    Understanding and communication trump compliance EVERY time.

    Like

    • Restless Hands
      June 11, 2014 at 7:08 pm

      I always work to explain this to my clients’ families. It’s amazing how many of them don’t realize how vulnerable their children are to bullying and abuse.

      Like

  2. June 5, 2014 at 7:13 am

    Great article. There is no one-size-fits-all method in dealing with those on the spectrum, Being on the spectrum myself and having a daughter who is as well gives me a bit of perspective. Peer therapy is fantastic and has done wonders for me and I’m sure others. I have found many people, including those on the autism spectrum are like icebergs; most is lying under the water but it is there, you just can’t see it.

    Like

    • Restless Hands
      June 11, 2014 at 7:07 pm

      So very true! Hard enough to remember that the rest of the iceberg is there– harder still to get a sense of its shape and size (to extend the metaphor) in people whose neurology (or language, or culture) is very different from one’s own.

      Like

  3. June 6, 2014 at 3:31 pm

    This is so clear and well put. It is such an emotional subject for so many of us that I think many people – myself included – end up shouting “no but you’re wrong!” when presented with rhetoric like a lot of ABA publications. We know they are harmful and threatening, but we are upset at the implications of that, and we lose our articulation to the fear. Everything you’ve said here is so very clear, and so very important, and I am really grateful to have read it and to be able to share it with others. Thank you.

    Like

    • Restless Hands
      June 11, 2014 at 7:06 pm

      I am so glad that putting ideas into words is one of my talents. And I am grateful for all the friends and other sources who take the time to share their ideas and concerns with me so that they can percolate around in my head and turn into essays like this one! I hope that my words will help to change people’s minds.

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