Kitchen Sink: Age of Autism, Cognitive Dissonance, Textbooks, Skepticism and Glee

"Ten years after the publication of these very words, ten years after my eyes read over them and highlighted them in yellow, my baby became 1 in 100. Not rare. Not life long. No institution needed." --Julie O at AoA today.

The writers and commenters at Age of Autism often show a constellation of beliefs regarding autism, the causes, the treatments, the paranoia, the conspiracy theories, and the woo. If you read the site frequently, I'm not sure how your head doesn't spin from trying to hold all these competing beliefs together. Honestly, I'm not sure how their heads don't spin from all the contradictions that they seemingly effortlessly accept into their versions of reality.

Obradovic's latest piece is short, and I'm not sure where precisely she's going, other than to point out that her copy of a 1991 psychology textbook said that autism was rare, serious, and usually led to institutionalization. Obradovic's concluding paragraph, quoted at the top, leaves one wondering where she's going. 

We'd all certainly agree that autism is not rare (although at 1 in 100, it's not overwhelmingly common, either); it certainly doesn't result in institutionalization for many on the spectrum, although long term outcomes for individual on the spectrum are rather nebulous. For example, my son will always need help; he can't drive, he is not able to work, and he needs assistance staying focused and on task. He won't be able to live alone, and so if living with family is not possible, he will need to live in an assisted living situation. Is that institutionalization? No, not quite, but it's certainly not independence, either. 

As to Obradovic's "Not life long," I can only surmise that she refers to recovery and her belief that she has recovered her child, despite the child continuing to have challenges and issues. The reality is that most individuals with autism will always be autistic, regardless of the dramatic, breathless assurances by parents that they are recovering their children. Will they make sometimes incredible progress? Absolutely.

I would have more appreciation for these tales of daring heroism by parents who go to all lengths to recover their child if the tales were of the children's progress, reflecting all the hard work the children do to attain new skills and make progress. Unfortunately, many stories by parents have little to do with their children and the often heroic efforts the CHILDREN make to overcome the challenges they face. These stories instead cast the parent as the protagonist and focus on the parent's valiant struggles to save their children. 

Obradovic's main complaint, though, is what that 1991 textbook said. Introductory psychology textbooks are for survey courses. Many current psychology texts today may not touch on autism at all; it says nothing about the importance of knowing about autism, nor does it reflect what is known. There are many conditions (in fact, most of the DSM-IV) that are not covered, mentioned, or brushed upon in survey psychology courses. The reason for that is that there is not time. In less than sixteen weeks, I have to cover the entire textbook; I spend no more than one class period per chapter.

I use Plotnik's eighth edition in my general psychology courses. He does use autism, right from the first chapter, as an exemplar of psychology's main goals: to describe, to explain, to predict, and to control. Unfortunately, the individual he uses as an example of autism is Donna Williams, who is the first to acknowledge that she has additional characteristics that have nothing to do with autism, which, however, Plotnik introduces as examples of autistic behavior (a good example of when his lack of expertise muddies the waters). This, one person with multiple diagnoses, is my student's introduction to autism, and it's not a good one. It would have been better to have provided several individuals; it's certainly going to bias students with no familiarity with autism into thinking all autistics are like Donna Williams. I think we can all agree that this is certainly not the case and is just as inaccurate as the Rainman film character mythology that remains dominant in mainstream society.

One of my biggest peeves, though, is that in using autism as an example of these four goals (describe, explain, predict, control), it comes across as incredibly arrogant and demeaning: one goal is to control autistic behaviors. Okay, that's fine for individuals who wish to learn how to exercise control over behaviors they deem negative or maladaptive. It's entirely another for an outside party to deem that all autistic behaviors are in need of control by the third party. I know that we as parents, regardless of where our children are developmentally, must help our children learn to control their own behaviors, and that in the interim, we help them control them by instituting a serious of reinforcers and punishments. I acknowledge that as an instructor I am working to control a classroom, so my frustration is not with the idea that we would work to understand a situation, a condition, in order to be able to help control it or mitigate the disabling aspects, but that this all autism is: something deficient that must be controlled by others. But, hey, I'm willing to admit I might just have some issues in general with the textbook. :-)

Textbooks are flawed instruments; no one person can know and understand the entire depth and breadth of the larger discipline and yet it is often one or two individuals writing the textbook; they cannot know all the literature, and often errors creep in. It means, and it's part of what I teach, that we must maintain skepticism in all of the reading we do; if I am a good teacher, I acknowledge the flawed state of the text, I encourage students to go beyond the text when they need or want to, but if they do not, to hold what I teach them in a skeptical manner. They must become Missourians: show me.

It doesn't mean they should reject out of hand all that they read; they must learn when it is okay to accept material, when it is necessary to question the material, and when it is okay to remain at arm's length from it. They should learn that the quickest way to shut off the ability to learn and grow is to become ideologically committed to their particular point of view. 

A true skeptic is willing to adjust his beliefs when the evidence warrants it. A true skeptic is willing to exist in a nebulous state of I don't know. It takes a bit of courage, I think, to walk around somewhat humbled by the uncertainties in the world; to admit that we could be wrong (that we almost assuredly are), and to be willing to follow the evidence wherever it leads.

The more I read, the more I learn, the more I know that there's so much I don't know. I am in awe at how much there is to know, humbled to realize that no matter how much effort I put forth, how much time I spend, I will never know it all. It is an incredible feeling to look out at all the disciplines, all the knowledge that millions of scientists and researchers across the globe add to our repositories of information each day! Hee, and I'll admit it fill me with the glee to think that no matter how old I get, no matter what knowledge I gain, that I'll never get bored, never be done learning.

1 comment:

Roger Kulp said...

For example, my son will always need help; he can't drive, he is not able to work, and he needs assistance staying focused and on task. He won't be able to live alone, and so if living with family is not possible, he will need to live in an assisted living situation. Is that institutionalization? No, not quite, but it's certainly not independence, either.

Believe it or not,this is about my level of functioning.Metabolic disease makes things even worse. Being able to type intelligent sentences into a computer,doesn't mean a lot as far as your level of functioning.

My father may be dying of prostate cancer.He is coming out from Pennsylvania in a couple of weeks,while we are deciding what to do after he and my mother die. My mother and I have talked about someone from an assisted living service coming out every day.

In New Mexico,we have something called a developmental disability waiver,that pays for such services.I am in a sort of a grey area,proven too disabled to live on my own,but not quite disabled enough to require full time assistance.