Saturday, February 11, 2006

Autism

Autism. When my son was diagnosed, I don’t think anyone really knew what it was at all. Things aren’t much better now. The Pediatric Neuropsychiatrist who made the official diagnosis wasn’t the best thing that could have happened. He was kind enough to imply that there was no cure, but that my son could grow up to be an independent productive member of society, or, he could end up in an institution - all depending on how I handled it.

No, he wasn’t calling me a refrigerator mother, but he was putting a heavy burden on my back. There were no services in our town. The closest we had was Mike Day in Boise, and he was simply too busy to be of any real assistance to us. He tried, and had some great ideas about how my son should be educated, but the local school district, my employer, dug in their heals.

After four years of waiting, my son finally got accepted into an ABA program that was coming to our town. The first therapist we had was extremely gifted. She is one of those people who sees the person underneath the behavior. She taught me how to be non-emotional and far more accepting of the symptoms that were a part of his autism.

My son got a lot better in the short time she was with him. I unfortunately stayed with the program for too long after she was gone. The others, while they were good at saying “no that’s wrong” and putting kids in time-out, were absolutely clueless as to how to help their clients navigate effectively through their lives with their disability. A lot of stress was added to my son’s life. I limited their services to working with him in school, because the school district has really strong heals, until he was functioning well enough to not need them any more. I gave them a couple of months of social, then pulled him. It was more harmful than good.

We cruised along for several years without private services. Then his high school teacher suggested he see a counselor friend of hers. He seemed nice, and it felt to me as though God put him in my path for my son. It worked well at first. Then he wanted to put Zach on medications. I should have, and wish now that I would have, said no, no, no, and stuck with it. He used my insecurity and fears against me and now, my son is on Seroquel. Now he’s 18 and decides for himself, but he still hasn’t chosen to stop. He is also on and Zoloft, and should probably stay with that as he does seem much happier now.

The real problem is, that even though this counselor (Mike) has a son with an ASD, I don’t think he understands it at all. My son didn’t develop the skill to recognize the shadows were just shadows, so Mike decided that he was hallucinating. My son has been bullied and teased and used and abused by so many people in his life that he has some real paranoia to have to deal with. But Mike is sure this is Schizo related. I think Mike needs to read some of the blogs by autistics. My son is just like them. The way he thinks, the way he feels.

At this time, it really looks like my son will live an independent life. I don’t know how productive he will be at this point, but SSI will be there for him. He dreams of attending college and moving out on his own. I see no reason why he shouldn’t.

It was a difficult road, but we seem to have made it successfully. And to be honest, I don’t think I am the reason for my son’s success. He deserves all the credit for that.

I think I’ll start working on a Neurodiversity blog. Neurotypical people think that, because they are in the majority, they are right. I would like to disprove that notion.

4 comments:

  1. Someone told me that autistic children are blessed by God because they can see the world in ways that we can't. Good luck with your son. God bless you.

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  2. It's hard to find people who understand, isn't it.

    Best wishes!

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  3. rsj456: All people are blessed by God. People who have autism definitely see what the rest of us see, they just don't understand it the same way we do. It doesn't make them right or wrong, anymore than it makes a neurotypical right or wrong. Just different. I don't know if you can call the abuse that people with disabilites receive throughout their lives a blessing. I do know that having autism, or having a son with autism is no curse. It is dealing with the skewed views of the people who think they are typical.

    Leighann: It's next to impossible to find someone who understands. Autism is only begining to be understood, and there are so many special interest groups who want to spread their ideas, and most are wrong. To be honest, the only way to understand autism is to ask someone who is autistic!

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  4. Hi Cheri.
    My name is Holly. I was/am attending a 2 day conference here in SLO, CA with renowned psychologist Ron Leaf. I whole-heartedly agree with Dr. Leaf's ABA approach, however I discovered the greatly lauded UCLA research team he participated in 20+ years ago lacked evidence of a baseline (this makes me not to trusting of him as a result). However, I used to live in Boise and I worked with Mike Day. I just wanted to a) thank you for the sweet surprise it was finding his name here and b) perhaps mention that while Mike is (almost always) "very busy" I'm thrilled that my teacher of all things behavioral was still able to provide input.
    I wish you the best of luck/hope in your own future as well as that of your son, and I congratulate your son that he will have independence as an adult.

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