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Waiting on Transition

  • Posted on November 23, 2011 at 12:00 PM

I attended Alex’s IEP and 3-year re-evaluation on Monday. By mutual consent, the meetings were combined and the material of the IEP represented most of the re-evaluation work, simply because nobody had any doubt that Alex still qualifies for special education services.

One good thing about the 3-year re-evaluation: When one of the therapists questioned why Alex wasn’t marked as qualifying for the special education services based on cognitive disabilities criteria, it wasn’t me who had to explain. The psychologist who was sitting in as part of the re-evaluation team provided the explanation, though he wasn’t a regular part of Alex’s education team.

His explanation was simple: We don’t know. Considering Alex’s sensory, communication and social delays and difficulties—all part of the autism criteria—we cannot effectively assess his cognitive disabilities; and, so we do not officially attach that label to Alex. All simple and straightforward.

The bad thing, of course, is that this had to be said. Again. Granted, the therapist in question is new to Alex. But the dominant assumption seems to be that because Alex is placed in a CD classroom he must have cognitive disabilities. We can assume—and many people choose to do so—that because Alex cannot effectively and consistently communicate that he knows how to do something, then he must not be able to do it. Of course, we know Alex knows his numbers 1 – 50, but because he cannot consistently prove those abilities through testing procedures, his teachers continue drilling him on them.

I almost wish we knew that Alex did have cognitive disabilities. First, there’s nothing particularly wrong with cognitive disabilities. You can still live a happy, productive life with cognitive disabilities. You can still be wholly and utterly a person with cognitive disabilities. It is a disability and does pose certain limits, and those limits do tend to put a ceiling on what you can do, but with enough effort from the support personnel and enough acceptance and accommodation, you can attain a pretty awesome quality of life. (I am not suggesting that’s the norm, but that it is possible.) On the other hand, not knowing is very difficult. Imagine being a twelve-year-old boy with a normal or above-average intelligence (distinctly possible since both his parents have above-average IQs), but being unable to express that intelligence in a way meaningful to others and to be drilled daily on the most rudimentary subjects like “What color is your shirt?” and “What comes after 32?”. If it were me, I’d be very frustrated, very agitated, and sometimes I’d get very angry.

I can, just barely, imagine Alex’s desire to break through that barrier—and the frustration and anger when he can’t. One thing about typical education strategies that always frustrated me was the rule that you say what you’re going to say, then you say it, and then you say what you’ve said. While teachers generally don’t follow this rigid public-speaking form, they repeat themselves a lot. As a child, I imagined how much more time I would have to play if they’d just say it once and leave it be. I didn’t need for them to repeat, repeat, repeat the same material over and over and over again. And I didn’t realize how important it was for the other students. It was frustrating. It was annoying. When I imagine myself as Alex with a normal intelligence, stuck in this repeat-a-thon for years, it makes me want to scream. It’s so pointless, so useless, and so very frustrating.

And Alex is frustrated. He does scream. He acts out in aggressive fashion. What if it’s not an inability to regulate his sensory system? What if it’s the combined frustration of being unable to communicate and being drilled with simple concepts day in and day out? What if his inability to regulate his sensory system is, in large part, a measure of his frustration in having knowledge that he cannot express and being drilled over and over on “meaningless” tasks?

I worry that this is exactly what Alex is going through, though I cannot prove it and I seem powerless to change it. Every time I try to nudge or push or shove the teachers into experimenting to see if Alex will find more difficult material more stimulating—I hit a brick wall, almost totally immovable.

So I hope and pray that the next year, the next school, the next attempt will bring about a break-through, either for Alex and his communication abilities or for me and my need to try to up the ante.

But for all my imaginings, the reality is that Alex’s sensory system is a mystery. We’ve tried just about everything any of us has ever come across and nothing can get him calm and keep him calm for more than a few seconds or a few minutes. Willy can go 0-60 with no apparent transition or cause. Ben can go 0-80. Alex goes from 0 to 150, and he has no in-between. He’s either asleep, at the edge of sensory overload, or over the cliff speeding for the crash at the bottom of the ravine.

My little guy faces so many barriers and we’ve tried so many things. And we’re stuck waiting…waiting…waiting for someone to figure out what we can do to help him.

The Relevance of Self-Efficacy

  • Posted on January 29, 2010 at 3:05 AM

Another thought spurred by my studies starts with this definition:

Self-efficacy refers to an individual’s convictions (or confidence) about his or her abilities to mobilize the motivation, cognitive resources, and course of action needed to successfully execute a specific task within a given context.

The Fundamentals of Organizational Behavior, 4th ed., by Andrew J. DuBrin, 2007, pg. 126

The chapter is on motivation, particularly as it is applied in work situations.  It relies heavily on psychology.  Two particular applications of this definition of self-efficacy stood out for me.

First, there is expectancy theory.  Basically with expectancy theory, the idea is that people will be highly motivated if they have high expectancy, high instrumentality, and high valence.  Expectancy involves the belief that more effort will improve performance.  Instrumentality involves the belief that improved performance will improve the outcome.  Valence involves the belief that the outcome is worth the effort.  If someone does not expect that their effort will improve their performance, they’re not likely to try harder.  If someone does not believe performance is instrumental in getting the results they want, they’re not likely to perform.  If someone does not value the outcome, they’re not likely to care enough to try.

(Realize that each of these high/low values are subjective, meaning they rely on individual belief not independent reality.  For example, trying harder may really lead to doing better, but if I don’t believe that it will, I’m not likely to try harder and so I won’t do better.  Therefore, belief is a very powerful, especially belief in oneself.)

One of the things that struck me as I was studying this concept was how it serves, at least in part, to explain some of the issues in relation to autism.  So often it is easier to assume someone with disabilities, especially cognitive disabilities, cannot do something.  This assumption is so easy that people often do not stop to question why they don’t do something.  It’s like the possibility that the individual does not choose to perform is never even considered.

The first time I ran smack into this concept was when I was concerned that Alex could not catch.  I understood, at least to some degree, the complexity of the catching action and its association with later skills development.  So, that Alex couldn’t catch was something that deserved attention.  Sitting with the physical therapist, I learned the distinction between can’t catch and doesn’t catch.  Specifically, if a child does not catch a ball, first you have to discern whether the child has any interest in the ball; if not, you must then find something the child does have an interest in.  Alex can rarely be induced to catch a ball, but if you throw a Veggie Tales plush toy at him he’ll probably catch it.  Unfortunately, the perspective of this therapist seems rather rare, but I’m certainly glad she shared it with me.

The next relevant way this concept of self-efficacy is used is in social learning theory.  Social learning theory is the process of learning through observing and mimicking others.  Many parents of young children with autism will recognize the significance of this, even if they’ve never heard the term.  It was drilled in me when the boys were young that children with autism have to be taught to mimic so that they can learn.  But, in looking closer at the concept through its business applications, once again the issues of expectancy theory come into play.  Expectancy (the belief that more effort will lead to improved performance), instrumentality (the belief that improved performance will lead to a better outcome), and valence (the level of desire for the outcome) are key aspects of social learning.  Some of the things that teachers and therapists are bent on teaching my children are of no interest to them.  The valence simply isn’t there.  Yet, if they watch me use the VCR or the computer, they pick those skills up quick.  And, yes, it is through social learning—observing and mimicking desired behaviors.

And now, we’re back to self-efficacy.  While the significance of instrumentality and valence cannot be ignored (yet seems to be ignored more often than not), when teaching people with autism self-efficacy has its own relevance.  Self-efficacy (belief in one’s own abilities) is a component of self-esteem (which also includes the person’s belief that he or she is worthy of happiness, also called self-respect).  Having fundamentally different neurological processes, and growing up learning in a million different ways (some subtle, some quite obvious) that your neurological processes are inferior, is going to affect any person’s self-efficacy and self-respect.  Yet, when attaining a new skill expectancy is essential, which requires self-efficacy.  If one has high self-efficacy, then one is more likely to believe that more effort will improve performance.  If one has low self-efficacy, then one is more likely to believe that more effort will not improve performance.  If one’s expectancy is low enough, then the individual will not even try to perform.

And it all comes back together.  If we insist on trying to teach people a task for which they have low instrumentality and/or low valence without first successfully raising their perceptions of instrumentality and/or valence—then claim that since they did not learn the task they must try harder or are incapable—we are eroding (and eventually destroying) that individual’s expectancy, self-efficacy, and self-esteem.  In the long-run, this erosion creates an environment of systemic disempowerment.  Essentially, we are teaching people they can’t, because we are trying to force them to learn something for which they have no interest and for which we create no sense of value.  That “can’t” attitude further pervades their lives.

The more I learn about “normal” psychology the more I believe that the worse thing psychologists ever did was divorce “abnormal” psychology from “normal” psychology.  I suspect if psychologists opened their minds to the possibility that the assumption that “abnormal = bad” is wrong, the more they would be able to see how “normal” psychology relates to their own ineffectiveness.  Perhaps then more people would get genuine help that repairs and re-builds their senses of expectancy, self-efficacy, and self-esteem, which would lead to improved performance on the behaviors they value.