Autism Therapies and The Autistic Individual

I have written about my views on various therapies and treatments several times. One such post was:
http://theautisticme.blogspot.com/2011/02/autism-therapies-and-research.html

Early in that post, I address the problems with the term "Applied Behavior Analysis" (ABA) being applied as a generic term for all therapies associated with the Revised Lovaas therapies (Dr. Lovaas' original approach developed at UCLA in the 1970s, minus the aversions). The problem within the autism community is that most parents associate ABA with this 8 hr/day, 40 hr/week approach to treating autism-related behaviors.

Here is what I wrote at the time:

I do not and cannot agree with some "neurodiversity" activists that we should not research "ABA" therapies. First, this assumes all ABA is still dependent on the out-dated and discredited early Lovaas work. Second, we cannot ignore the fact that the brain is more adaptable at early ages.

We know children do learn languages easier than adults, and I don't believe it is a stretch to theorize that young minds are more likely to respond to any behavioral therapies.

I'm not convinced that ABA therapies, sensory integration therapies, or many other therapies for autism have a sufficiently high rate of success. I also believe some therapies are so discredited that they should be abandoned entirely, as research has found no credible evidence of success. Facilitated communication falls into the category of "Abandon it, already!"

I do not oppose all therapies, but the therapies many parents are persuaded to try might have more negative effects than long-term, lasting positive effects. We cannot allow self-injurious behaviors, for example. Violent, dangerous behaviors must be helped. I know that and support any and all research that might help prevent serious harm to either the autistic person or others.

My own experiences with a number of "educational therapists" and other experts have been less than wonderful. That has definitely biased me. I can recall six such experts specifically, all in different locations and with different affiliations, who did nothing but make me feel lousy about myself. These supposed support specialists lowered my self-esteem and left me with the sense I was damaged, a broken object to be repaired at least well enough to not shock or offend other people.

Parents pay anywhere from $45 to $125/hr in most cities for a BCBA (Board Certified Behavior Analyst) to work with an autistic child. The highest "success rate" for ABA I have located in peer-reviewed journals is 47%, and that was for interventions starting before the age of five, conducted for 40 hours weekly over at least six months. But, it wasn't clear how "success" was defined or for how long the success (change in behavior, I assume) was maintained without constant support.

In point of fact, the 47% rate of success seems to come from a single source. Yes, it happens to be Lovaas:

In the most comprehensive and best controlled of these studies, Lovaas (1987) compared 40 hours a week of intensive 1:1 behavior analytic treatment to a minimal treatment control group (less than 10 hours of 1:1 instruction), and to a second group of children receiving non-behavioral services elsewhere. Among the intensive treatment recipients, 47% (9 of 19) successfully completed first grade and scored in the average to above average range on standardized IQ tests and other measures (Lovaas, 1987).

Other studies have achieved a 30% to 35% success rate, but with significant need for follow-up and continuing therapies for several years. What about the other 65% to 70% of the children in these studies? No observed behavioral improvement outside the therapeutic setting. In other words, when the child is at home without a therapist the "undesirable" traits resurface. The same is true of studies focused on "Social Stories" — about a third of children respond and retain the lessons for more than a week. And that's called a successful approach to therapy.

We must do better for autistic children, teens, and adults. There must be better approaches. I just do not know what they are or how to discover them. I'm sorry, but I have no great ideas for helping more people — but I know we must help them.

I lack faith in psychological supports. I'm a skeptic, and I admit it. My observations at schools and my discussions with parents across the nation have done little to improve my outlook towards therapies for autistic children. I often wonder what the child is trying to tell the adults. I know, from experience, the child is shaking, screaming, or crying for a reason. The child isn't misbehaving! He or she is communicating distress, often painful distress.

Even as an adult, the mental health experts have been better at doing damage than finding solutions to what were, it turns out, physical conditions being confused with psychological issues. For example, I had dangerously low blood counts that went undiagnosed for six months or more. I reported being dizzy and feeling "slow" mentally. I was referred to a psychologist for testing and she said some pretty stupid things.

I was told I needed to learn how to "stop being autistic" by one counselor in Minnesota. I needed to "mask the traits" if I wanted to succeed. I asked how being slow and dizzy was an autistic thing. Apparently, it just is.

Sometimes, there really is a reason for a behavior or trait, but professionals trained in one discipline are too quick to assume they know the cause. They see what they were trained to see: cognitive issues or mental health issues, in my case. Turns out, I was dizzy for a darn good reason — internal blood loss. A physician finally discovered this after I fainted in a medical office and was rushed to the emergency room.

Funny, it had nothing at all to do with behaving autistic.

I was left with the sense that things haven't improved much since my childhood, when I was told to stop being "so hyper."

The challenge I have communicating physical conditions led several highly trained mental health experts to assume I was simply "being autistic" and didn't have a real problem. Ironically, I'm in a city with the best of the best medical and mental health experts, but they really don't understand when an autistic person is trying to tell them something.

All the experts wanted me to do was feign normalcy, no matter how much physical pain I was in. The pain response was what was being deemed "autistic" by these psychologists and psychiatrists.

This leads me to wonder how many autistic traits "treated" by therapy are really an attempt to communicate agony, pain, suffering, et cetera. I know I was just trying to get someone to understand my extreme distress. Instead, I was told to stop being autistic.

That's what my childhood was like, too. I would fidget and gripe and whine. I have a real, serious brachial plexus injury and spinal issues, but the "behavioral" experts didn't listen — they wanted me to stop expressing agony. It would be like telling anyone else, "Ignore the knife in your head. Act normal or you won't get a gold star!"

I wish more experts knew what it was like from the autistic perspective. The person sitting across the table or the child on the play mat is an autistic individual.