Sunday, July 26, 2009

Autism Cults

I heard the term "autism cult" the other day on Twitter. I had to laugh at that. Having spent significant time in Christian circles I know that "cult" is a word that is thrown around a lot between denominations and sects. I've heard churches use the "cult" word in the way a teenage girl might call another teenage girl a "whore". One is upright and pure, the other devious and false. I also hear it in martial arts. Be on the alert for "cultish" behavior. What is a cult? Is DAN! and the Autism Research Institute a cult? Generation Rescue sending out their "rescue angels" to prey on desperate parents and teach them to hate their pediatrician and their neurologist? Hot damn, give parents some credit! We are not brainwashed drones, we just want to help our kids. I am not going to give my whole story here, because I don't have 2 weeks to write it, but I have experienced the good and the bad of autism intervention. There ARE recovered children, you cannot deny that. My youngest would be an example of that. I spent more money than I care to count on interventions that did nothing for my other two. I do not regret it, nor have I given up on them. The doctors that cared for my children were not preying on me. They were the only ones offering help. If I have even a chance of recovery, I'm going to take it. Most insurances don't cover alternative medicine. I fail to see how this is the fault of the provider, all who have been reasonable and compassionate in regards to how they charged us. Unfortunately for us the bill was x3 and we couldn't continue down that path forever.

DAN!, Generation Rescue, and the like have been the targets of much ridicule lately. "Parents should not be given false hope", "Parents are being taken advantage of", "Parents should stay with interventions that have been proven and studied". So I'm supposed to sit around for some "expert" from the CDC to give me the green light to help my child? Traditional therapies are fine, but barely a band aid. When my kids were smaller the much heralded ABA therapy required an in-home therapist (none existed in my area) to the tune of 40 hrs a week and 40,000 a year. I have no idea what it is now. It has been my experience that most of the "autism cult" ridicule has been from parents of higher functioning children. It also comes from the concerned aunt/uncle/grandparent of autistic children. Thank you for your concern. Thank you for talking about the issue. Autism needs to be discussed, it is a huge problem that is not going anywhere and affects everyone. Alternative therapies gave me reason to hope, you can call it false hope if you like, but for me there was nothing false about being able to get up in the morning and crawl out of the pit of despair. My two didn't recover (yet) and may never, but I have nothing but admiration for the scientists, researchers, and crazy parents who have not stopped looking for answers. And to you, parent of asperger's child or PDD child, you really have NO IDEA what my life is like until you care for a low functioning child everyday.

2 comments:

  1. Hi Leah, I came across your blog through the Daily Aikido blog. I enjoyed reading your different posts and hope you will continue with it.

    Maybe you could help me out with a question I have. You have a challenging situation with your three children and I only wish you and them the best.

    I don't have any first hand experience with Autism but I have read some of Barry Neil Kaufman's books with regards to his work with autism at the Option Institute.

    Are you familiar with the work of Barry and Suzi Kaufman and the Option Institute. If you have had first hand experience with them or the Option Institute, what was your experience like?

    As I say, I have no first hand experience with them or autism, but the description of their work always interested me and I would like to find comments from those who may have worked with them personally.

    Warm regards and best wishes, David

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  2. Option Institute is a destructive cult.

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