Tuesday, December 1, 2009

The path not chosen

So this study has put me on the defensive. Nothing like conclusions that point to things that should have been done differently in msk’s past to make me feel crappy. Should he have received 20 - 40 hours of intensive one-on-one Applied Behavior Analysis (ABA) per week when he was a toddler? Given that we had suspicions in pre-school should we have pushed for a quicker diagnosis and jumped directly into some sort of autistic boot camp? Should we have, then and now, followed him around with a notebook, counting and measuring and using every waking hour as an opportunity for therapy?

I could start with the fact that we didn’t and there’s no way to go back and therefore que sera sera. I feel like some people commenting on this study (over here) are in fact judging me as a “bad parent” so let me tell you why I feel ok about this path that we’re on. In no way does this mean that parents who have found a way to get intensive ABA have made a mistake, just that I don't feel guilty that we weren't able to.

Point one – We did go for evaluation as quickly as the normal system process allowed. There was the in-school evaluation, along with a follow up visit by city pschycologist. There was the several month wait to get an evaluation by Kennedy Krieger. There was the wait for the evaluation report. I cared and I followed up, but I was not the demanding parent who jumps ahead in line because honestly I was coming to grips with the idea of autism.

Point two – When the evaluation pointed towards Kennedy Krieger’s own preschool program I was skeptical. When I found out it was $40K for a half-day program I was even more skeptical. After a lot of long and intense phone calls it became clear that my very good insurance wouldn’t pay for this program. We also found out that there was a several year waiting list for the autism waiver that would have paid for the program, at which point he would have been too old. I decided it didn’t matter about my skepticism since there was no way he could attend.

Point three – This one might be sour grapes, but when I started looking more deeply at it, wrongly or rightly, ABA rubbed me in the wrong way. People are always quick to talk about autism robbing kids of their “human-ness”. ABA ,with its constant reinforcements seemed too similar to the dog training I had just completed. At this early stage in his diagnosis I was all about holding on to msk’s human-ness since I knew we were going to be much more closely involved for much longer than a typical parent/kid relationship.

Point four – As time went on I learned that one of msk’s biggest strengths was a sunny disposition. This drew people in to help him instead of being pushed away by his non-typical behaviors. One of the ways to change this disposition is constant microscopic analysis of his behaviors. I might not know how msk is going to function in society, but I want to know he will find a way and a place to be happy. It is counter-intuitive to me that he needs to be miserable now to be happy later. Life is a journey and not a destination.

Point five - Just because msk is autistic doesn't mean that he doesn't need the unconditional love and typical relationships with his parents. I'm not sure this happens if parents are cast as therapists. Add in two sibling that have their own needs for support from their parents.

On a more general note, I think we need to stand back and think about the practicality of this type of therapy. If 1 in 150 individuals are on the spectrum, how many really good ABA therapists are required in this country? If half-day preschool is $40K per child how much money is required to provide this for every child who needs it? Where are the cuts going to come from to finance universal intensive autism ABA therapy? Maybe I shouldn't ask that question, but it seems like it needs to be thought about.

So, I now have a child who is in a full inclusion setting and is on track (in my mind) to meet academic and social skills on a level with his peers with accommodations as required by his disability. Seems like a good outcome. Would the accommodations be different if he had received all the ABA that Kennedy Krieger recommended when he was 4? Who knows. Would he be able to pass for not autistic at this point? Seems doubtful, and I’m not sure if that’s really the goal we should be shooting for. If he was passing for normal, would every day and ever social interaction be painful and stressful for him?

So many questions and so few answers. Our choices are made and we move forward. Msk is loved child who is valued at home and at school. At this moment, what more can you ask for?


  1. You ask:

    "If he was passing for normal, would every day and ever social interaction be painful and stressful for him?"

    As an autistic woman diagnosed at 50, who spent my life passing for NT until I burned out on many levels, I can answer unequivocably, "Yes, Yes, Yes, Yes...Yes. More painful and more stressful than you can possibly imagine."

    Now, in mid-life, I'm reclaiming the gifts of my autism--my creativity, my associative thinking, my intense appreciation of the visual world, my hunger for texture and color, and my love for myself. All this after 25+ years of therapy in which I tried, with the help of excellent professionals, to become "normal."

    It didn't work.

    I don't need fixing, because there is nothing wrong with me. I'm just different from the norm. It sounds like you feel similarly about your son. He's loved at home and at school for who he is. There is nothing more important. Nothing.

    It's not about us passing for NT. It's about being loved for who we really are.

    Screw the studies and screw the so-called "experts." Love your kid, follow your instincts, and if the price tag for something seems absurd, it is.

  2. Rachel -
    Thanks so much for the thoughtful comment. Autism has such a diverse spectrum of definitions. As much as I might like there to be a single "right thing" to do as a parent, I think there are individual choices to be made - now by me and later by my son.

  3. These are going to be the same people who would consider you to be a bad parent because you use the word "autistic". Feh.

    When I was working on my Master's Degree, we had opportunity to visit a school which was dedicated to ABA, and my attitude was much the same as yours: ABA felt an awful lot like dog training and I wasn't especially comfortable with it.

    Autism (as you know) is a huge spectrum of disorder, and I wouldn't be surprised if it becomes further fractured in future editions of the DSM. Consequently, there are going to be a lot of approaches used on people with ASD.

    You know what's best for your youngster? Whatever he's responding to. 'nuff said.


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