Thursday, May 6, 2010

Autism Remediation: Moving Beyond “Socially Meaningful” Behaviors

This is an exciting time in the field of autism research. Due to advances in research techniques and increased funding for autism research, we are discovering new things about the nature and causes of autism, things that should have profound implications for treatment.

For example, we now know that autism is characterized by differences in brain structure and neural “wiring” compared with typical individuals. We know that those differences in brain structure are related to difficulties in information processing for individuals with autism. Such processing challenges affect the individuals’ capacities for specific mental abilities, such as taking in, understanding and responding to novel information, experience sharing, empathizing, appraising, categorizing, and evaluating information and stimuli for appropriate meaning, and thinking flexibly and creatively. We can refer to these abilities as “dynamic thinking” abilities. These are the core issues in autism. These processing difficulties are what cause the distinctive behaviors that characterize autism. The behaviors themselves are not the autism.

Intervention programs aimed at remediating autism need to address the tough questions related to the core information processing issues: 1. Can we design an intervention program that will train the brains of individuals with autism to process information more like typical individuals do? 2. What would such a program look like?

Unfortunately, most of the autism interventions today focus on changing the behaviors to be more socially acceptable, but do not address the core processing challenges. More and more autism professionals are beginning to talk about these processing challenges. This is a good sign. Clearly, they read the same research I do. Nevertheless, the autism professional community still appears to have a focus on producing socially acceptable behaviors. They are not asking the tough questions. They are not asking whether there is a way to remediate the processing challenge that caused the unacceptable behavior in the first place. Without addressing and remediating the core deficit areas, persons with autism have little chance for an independent life in adulthood. They will always be dependent on others.

These are strong statements, I know. Allow me to share an example to illustrate my point.

Recently I attended a lecture by a noted autism expert. I have great respect for this person's competence in his specific area of expertise, which happens to be behavial science. He also seems like a really nice guy. So, any critical comments here are not aimed at the person, merely at the method and the focus.

This speaker recounted a story of how he had been working with an ASD young man to teach him independent living skills. The current skill they were working on was independently shopping – selecting an item, going through the checkout line, and using a credit card to pay for it. As an aside, the speaker told the audience that the young man’s facilitators had decided to give him only a credit card, not a debit card, because they felt that he might inappropriately reveal the PIN of a debit card upon being questioned for it. The speaker commented that the young man had received so much drilling during his life: What’s your name, what’s your address, what’s your phone number, etc., and had gotten so used to automatically answering these questions, they feared that he would inappropriately give out his PIN when asked “What’s the PIN of your debit card?” not realizing the sensitivity of the information.

Bingo, I thought. Here is an example of a core deficit of autism – inability to evaluate and appraise information and circumstances for appropriate meaning. I hope this deficit is being addressed in his intervention plan, I thought.

The speaker showed us a video clip of this young man going through the checkout line. The cashier, by the way, had been prepped on how to scaffold the interaction – a good thing, I thought. I watched the clip and thought, “That seemed to go pretty well. He stood line, swiped his card, paid, and left.” The speaker noted he thought the encounter had been successful other than the fact that it took the young man a long time to swipe his card. I had not noticed this as being an issue because, hey, sometimes it takes me a long time to figure out those God-awful swipe machines myself. The speaker then asked the audience what skill we thought should be addressed next. I thought of a lot of things related to the core deficit areas of autism.

What was the answer? Card swiping fluency. That was it. There was no mention of any other challenges that would be dealt with in the future. Hmm, I thought. Card swiping fluency. A socially meaningful behavior, to be sure. But is teaching fluency in card swiping really that important? Isn’t this something he will pick up on his own as he shops more and more?

The speaker mentioned that he thought teaching this young man card swiping fluency was important because, if he swiped too slow, people behind him in line might get annoyed with him. So, it appeared that the next step in the intervention program would be lots of drilling on proper card swiping technique.

Wait a minute, I thought. How about letting the people in line behind him motivate him to speed up? “Excuse me, we are in a hurry. Can I help you with that?” Or even, “Come on, buddy, move it!” These are the types of social encounters we all have to deal with, every day, after all.

No one taught me how to swipe my card quickly in order to shelter me from the wrath of the customers behind me. When I fumble up my swiping, or when I have a huge grocery order, or when I screw up the self-scan mechanism, which I often do, I have to deal with exasperated sighs. I have to experience the guilt for delaying those folks, or the annoyance at them for having the nerve to rush me. I have to figure out how to respond – to apologize, to placate them, to stand up for myself. I have to experience the consequences of my response. This is dynamic thinking.

Is teaching card swiping fluency going to teach this young man how to handle the unavoidable dynamic elements of the shopping experience? Or is it merely a compensatory strategy which allows him to circumvent the dynamic thinking challenges that all of us must encounter every day? Will this man’s intervention program continue to revolve around mastering so-called “functional skills” at the expense of his learning how to THINK?

In watching the video and hearing the speaker’s narrative, I thought of many core areas of deficit that needed to be addressed with this young man: Perspective taking. Awareness of his environment. Awareness of his level of arousal and physical regulation or dysregulation (he tended to flap his arms). Ability to appraise situations and circumstances for appropriate meaning. Emotional regulation. Experience sharing. All areas that deal with his internal cognitive processes. His THINKING.

To be fair to the presenter, it is possible that these areas are indeed being addressed with this young man. But the presenter made no mention of them. I had the distinct feeling that the speaker considered these deeper challenge areas beyond hope, or at least beyond the scope of his intervention services.

So this young man will become proficient at swiping his card, I have no doubt. Because if you drill a person in a skill enough times, the person will learn the skill. There are reams of behavioral studies in the field of autism to back up this claim. But is this young man really on the path to living an independent life? From my perspective, no.

Autism professionals: listen up. When you think “functional skills,” please don’t think “card swiping fluency.” Think, instead, “ability to think and respond in a flexible manner to enable one to function in our dynamic world in everyday life.” Think remediation. Not compensation.

Dr. Steven Gutstein designed the RDI® Program with this paradigm of remediation in mind. I became certified in RDI® because I, too, share this vision.

If all autism professional shared this mindset of remediation, we would not have to “teach” this young man card swiping fluency. He would figure it out on his own or ask others to help him because he would realize its importance in certain situations. And he would have a debit card because he would know when and when not to divulge his PIN.

Of course remediation is possible. But first, all of us autism professionals need to believe that is it possible. Then we all need to get to work to make it happen. Not just for this young man. For the millions of individuals with autism who will not achieve a true quality of life without it.

Let’s do it.