Monday, September 08, 2008

Autism Support Group and ABA therapy

So, I started going to the Autism Support group that our county's "Family Connection" program offers. To say that it is a small group is an understatement. I know more parents of children with autism that don't go to the meetings than ones that do. I really don't know why I go. Its not that I don't get anything out of it, because nothing could be further from the truth. But I also feel like the group could be so much better if there was more people in it. Its really hard to get a feeling of support when there is only you, the leader, and one other mom there.

Tonight we watched a DVD that a mom brought in called "RECOVERY". It was the same spiel that I heard 10 years ago in college. If you have a young child with autism, you put them in an intense therapy program called "Applied Behavioral Analysis" for 40 hours a week and in a few years, you can't even tell they were ever once diagnosed with autism.

When I took the class back at Converse, I thought to myself, "Well, if I ever have a child with autism, this is definitely what I'd do." ABA therapy is based on discrete trials, concrete data, and meeting goals. Its very easy to see all the excellent results that this program can offer children with autism.

However, no one tells you that ABA therapy is the most expensive out there. And that medicaid and most private insurances do not pay a penny. Or that schools are not required to provide it either. Or that 40 hours is a REALLY long time for your three year old to be sitting at a table working on tasks the entire time. Or that ABA really doesn't address any of the sensory integration issues that a lot of kids on the spectrum face.

I realize now that ABA therapy isn't for everyone. Not only do I know that most parents can't afford it, but I also know that there are plenty of other therapies that help. And that basic principles of ABA can be applied in many different settings other than running discreet trials.

Do I ever want Jayce to have the opportunity for ABA therapy? Yes, I actually do. I have a call into one of the academies here that provide ABA services for kids like Jayce. But I won't be stopping his other therapies or cutting his time in preschool short.

When all is said and done, I really want Jayce to get the help he needs to be able to function in society as an independent person. I don't want to change him or his personality. I don't want him to love computers any less, I just want him to be comfortable with finding other hobbies as well. And I'm honestly okay if his hand flapping never goes away. There is a theory that children and adults with autism self-stim because it helps them organize their thoughts and it just plain feels good. Why would I want him to stop? Instead, maybe we could help him find other ways that are more socially appropriate, but still necessary, for him to do.

Do I hope Jayce will recover? First you have to define what you mean by the word. Even if Jayce loses his label and no longer meets criteria set forth in the diagnostic manual, his brain is still going to be wired the same way it was when he was born. His autistic symptoms might lessen as he gains new skills, but he's still the same person he's always been. So does "recovered" mean they don't have autism anymore? I just don't know. Or does it mean that you just can't tell? Of course, then one could argue that if he "recovers" then he never did have autism in the first place, it was just a mis-diagnosis. You could drive yourself batty just thinking about all of this.

So, really, this post has no point. Just a rambling of thoughts that were in my head after the meeting. I try not to get too deep or philosophical about anything because that's just not me. I am a very "what you see on the surface is what you get" kind of person. I leave all the deep soul searching to my friend Marci who does it much better than me :)

3 comments:

  1. I think it's great you can write things from your mind and get your thoughts out on to "paper". It's a talent you have always had.

    I am glad you found the meeting, I hope it is beneficial for you.

    I think you are a deep person, you know how to bring what you are feeling to the surface rather than bury it.

    Lots of love
    xoxo
    You know you are an intelligent person, when you can have mind battles with yourself and drive yourself batty :)

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  2. I know we talked a little about how ABA isn't very AP and how there are ways to incorporate it and still be AP. It can be benefitial. The part I don't like about ABA is that, yeah, they don't want you practicing any other form of therapy. It's ABA all the way. That's what immediately turned me off about ABA. My child is unique no matter how mundane her symptoms of autism are, like you said. She's still this fantastic one-of-a-kind kid! The methods I incorporate into her therapy are tailored to her and our parenting style and they work. :)

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  3. jess...hugs to you, mama. jayce is so fortunate to have a mama like you. i think some parents feel autism "stole" their child...and i think that's where the idea of recovery came from. for a parent to see the child so clearly, like you do...there's really no need for recovery. just growth and love, right? you're such a beautiful mama...and i'm so glad you share here. <3

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Thanks for commenting!