Autism: Truth and Wiring

“You’ll never amount to anything Judith Lyn” my blue-haired Granny muttered, cigarette hanging from her bottom lip, the ever present Dr. Pepper can sitting nearby. Wide-eyed and dumbfounded, I dug my bare toes into the dingy shag carpet of Granny’s trailer. I spent many of my childhood summers in Granny and Paw-Paw’s trailer nestled on the red-clay banks of Lake Texoma, fishing, swimming, working in Granny’s ceramics shop.

Eight years old. Innocent.

Somehow, I knew she was mistaken.

She had a point. I hadn’t exactly been part of the plan. When my mom, already a young mother of two little boys, found out she was pregnant with twins, she cried … tears of worry, not tears of joy. I spent the first year of my life in drafty, Navy housing sparsely furnished by the Red Cross.

Times were hard. I know what it’s like not to have heat. I know what it’s like to be embarrassed because you have to wear your older brother’s hand-me-down clothes to school. Cranky, dysfunctional Granny was in her own way giving me a reality check. Don’t aim too high, Judith Lyn. You won’t be disappointed….

I didn’t believe her…

I just wasn’t wired that way.

So I put my head down and I worked hard. I worked hard enough to get some scholarship money so I could start college. I worked various secretarial jobs to pay tuition. And I graduated.

Passing the C.P.A. exam was the next hurdle. Head down, I worked hard … and I passed.

I spent the next few years building the life that I never should have had. I married a wonderful man and had two beautiful children. If you’re a regular reader of this blog, you already are well acquainted with my beautiful babies. They are my joy. I love them unconditionally. Our life is a blessed one.

But I also love them enough to expect them to do their best … to aim high. And I am enabling them by providing many of the things I wasn’t provided. Encouragement. Financial support. (I know, I know … the psychology of this is all messed up… Don’t worry… I’ve had counseling.)

So when I read articles like the one titled The Truth About Autism that ran in Wired last week, I feel the familiar sensation of shag carpet and low expectations. The article provides insight into the world of a woman by the name of Amanda Baggs by stating …

Autistics like Baggs are now leading a nascent civil rights movement. "I remember in '99," she says, "seeing a number of gay pride Web sites. I envied how many there were and wished there was something like that for autism. Now there is." The message: We're here. We're weird. Get used to it.

This movement is being fueled by a small but growing cadre of neuropsychological researchers who are taking a fresh look at the nature of autism itself. The condition, they say, shouldn't be thought of as a disease to be eradicated. It may be that the autistic brain is not defective but simply different — an example of the variety of human development. These researchers assert that the focus on finding a cure for autism — the disease model — has kept science from asking fundamental questions about how autistic brains function

I must admit that I don’t know Amanda Baggs, I’ve simply read about her on the internet. (Amanda clarifies the history of the evolution of her diagnosis here.) She has every right to live her life on her own terms and be happy in the process. The world is filled with people of all shapes, sizes, colors and mindsets. Diversity is a powerful, wonderful thing.

But when scientists and experts start saying things like the autistic brain is not “defective but simply different” and that the focus on finding a cure for autism has "kept science from asking fundamental questions about how autistic brains function,” I become concerned.

To paraphrase Baggs, Yes, Jack is here. He is weird. Heck, so am I. But his communication system is completely paralyzed. He can’t type. He can’t gesture. He can’t speak. He can't blog or conduct interviews with Wired and CNN. And as his mom, I take exception with acceptance of this as his inevitable state of being.

For both my kids, my expectations are contradictory to the ones that I experienced as a child. My hope for them is that they are happy, healthy and know the sweet satisfaction of reaching their full potential. My job as their mom is to, pardon the overused cliché, give them roots and wings. After all, they will more than likely live the majority of their lives without me around to protect and provide for them.

Accepting limitations.

Thinking of challenges as something warm and fuzzy.

Comparing autism to sexual orientation.

With apologies to Wired and those who embrace this frame of mind… I’m simply not wired to think that way.