Wednesday, March 11, 2009

Let Me Hear Your Voice

Let Me Hear Your Voice -- a thoroughly interesting account of "A Family's Triumph over Autism".

This book had a 70's feeling to me and reminded me of some of the early unschooling books like Better Than School and And the Children Played. Not that it had an unschooly feeling at all, but because it was passionately and articulately written and very personal. It also reminded me a bit of Cushla and her Books, and Karen. These are all stories of strong, creative, dedicated parents who are willing to go to great but humane lengths to help their children become what they are capable of being.

Writing in the early 90's, when autism was still largely a mystery and often treated with psychoanalysis, or thought of as a mental illness precipitated by poor mothering, the book recounts the family's successful experience with Ivan Lovaas's Applied Behavorial Analysis . It also recounts negatively the family's experience with Holding Therapy 's philosophy (though she did use some of the actual practice of "holding" and found them beneficial in combination with the behaviorial approach).

The author, a devout Catholic with a PhD, who had chosen to stay at home to be a fulltime mother of her three small children, started with reservations about the behavorial approach because it seemed mechanistic and harsh. Unlike some of the ABA proponents, she refused to use any negative aversives such as slaps and electrical shocks. In spite of her initial concerns, she found that the method brought results, helping her child to come out of her interior world and engage with her family and environment.

Her daughter's therapy involved two hours a day of behaviorial work with a therapist, one hour a day of "holding" with mother, and 3 hours a week with a speech and language therapist as well as countless hours of research and consultation with other parents and various doctors. By school age she was able to be mainstreamed into a normal school environment. I haven't gotten yet to the part where her younger son is diagnosed with autism. ... that is in part II of the book.

I particularly am finding the book interesting because I think that the Early Intervention center Aidan went to used some behavioral techniques. However, it was thoroughly inadequate for him. For one thing, he isn't autistic though he shares some behavorial traits and I often read books about autism for insights on how to approach his development. For another thing, it was for 1 hour once a week which is apparently not nearly enough time. And thirdly, since I was not on the same page as they were, and they did not really explain the approach or seem to thoroughly understand it themselves, it was sterile because I did not partake of their goals or methods and so it didn't carry over at all. So the therapy actually did him harm.

I have deep philosophical concerns about strict or mechanical behaviorism but from what I read in the book this form seems a bit more like what I'd call "deep intervention". The therapists and parents work full time to keep the child engaged and interacting. This reminded me just a bit of Charlotte Mason's emphasis on "habits" as "laying down the rails" and also stopping bad habits just as seriously as you would treat a physical disorder like measles. This is basically the approach the book's author took -- she saw autism as a disease, a progressive one that was taking her child away from her, so everything she did was trying to bring her child back from the grip of the disease.

I don't know enough about autism or about ABA to know whether it is the best way or not, but I certainly am finding the book gripping to read from the perspective of a homeschooling mother and the mother of a special needs child. Aidan flourishes so well without behavoristic training that I don't think I'd want to take that approach. However, I do see better after reading this why the therapists at his EI were doing what they did and I also see how some very targeted training can be helpful in generalizing a real and personally integrated style of behavior -- something that Charlotte Mason seeems to refer to often (as well as Montessori) and which I previously had trouble making sense of.


PisecoMom said...

Reading your account makes me want to go back & reread this book! I read it several years ago.

I worked for two years at an ABA school and so her take on ABA as well as other theories & interventions offered was very interesting to me. Having worked in the method for two years, I have my own opinions about the efficacy of the treatment both in theory and in practice. :)

I'll have to pull this one back off the shelf.

Anonymous said...

I remember reading this book. I liked it at the time...

When we first started our journey with autism and my oldest, I was convinced that ABA was the way to go. But, finding help with an ABA program is next to impossible around here. As I tried to implement this protocol on my own, over time I discovered that, while it's very useful for teaching specific and static skills, it left HUGE holes in development.

What I mean by this is that, while my son can handle the small details with life rather well, he has a harder time dealing with things when the "big picture" changes. You might think of it as having difficulty with gestalt thinking - he misses the point quite often.

I think that you are doing a lot of good things with Aiden and read your thoughts with a lot of interest.

Willa said...

Very interesting -- thanks! I am glad you both commented, since I was hoping that people who know more than me about the method would say something.

I would not be able to manage an ABA program in our area, either, and as I mentioned I disliked the modified form I encountered in early intervention.

I did get some ideas about how to work with Aidan in a more focused way, though. I like the idea of breaking skills down carefully into manageable parts. In his case, he seems to enjoy a form of repetition and he does need some work on his attention span, so I thought maybe some of the incremental skill development might help him there.