Adjusting Expectations

I’ve been doing a lot of research this past week on the (US) nation’s best-known autism organization Autism Speaks. Spoiler alert: They are not a charity, not an advocacy group, and donating to them is counterproductive to aiding quality of life for autistic people. I’ll be doing a video on them, their finances, and how much I hate them upcoming but for now I want to talk about a few other thoughts this research has stirred up in my head.

Within the “autism community” (a group at least as nebulous and diverse as the “atheist community” I frequently read about in blogs) there are two basic camps: find-a-cure and neurodiversity. Viking and I most definitely belong in the second camp. Here are our reasons:

1. Autism is not a disease like cancer or AIDS (despite what the Autism Speaks ads portray.) It is a difference in neurological processing, so finding a “cure” does not mean the same thing in this context.
2. As naturalist atheists, Viking & I both strongly believe that “who we are” is in our brains. If our son’s brain was different, if he was neurotypical, he would not be the same boy. I do not want to “cure” my son’s personality.
3. People with autism can lead full, engaging, satisfying lives with varied degrees of support services needed to accomplish this.
4. Autism has benefits. That’s right – benefits. My son has the best recall of anyone I know. He is gaining encyclopedic knowledge of dinosaurs, and every fact he learns, he retains. His intense focus and curiosity may serve him well in a variety of adult fields of study and interest.

A lot of parents take an autism diagnosis as bad news. Messages of fear are spread by the anti-vaccines crowd, who are so successful in scaring parents about autism, those same parents forget the risks of vaccine-preventable diseases like Polio and Rubella.

I think for a lot of parents the hardest part is giving up the dreams they had for their child. My dreams for my son have always been non-specific: I want him to find work he finds compelling in an environment he’s comfortable in, with enough income to pay his bills. Call it the Lower Class American Dream, but my main concerns have always been for his health and happiness, not for any specific career aspiration or personality archetype I wanted him to be.

I intentionally avoided those thoughts and projections when he was an infant, trying to find out who he really was and is, rather than mold him into my idea of the Ideal Son. Because I’ve always been more interested in finding out who he is and nurturing that, the diagnosis wasn’t a blow to me.

I had a reduced load of adjusting my expectations. Because my mother & I were both speech-delayed, because I was already expecting that to be a possibility, it was easier for me to bear the Mommy Snipe Wars at the playground, where women would compete on their toddler’s developmental progress (a game I chose not to participate in).

My son isn’t likely to be the captain of his high school football team (even if I would let him play, which I won’t) or voted Most Popular or elected Prom King, but his odds of winning a Nobel are significantly higher. And even with his social challenges, my son is incredibly charming and has wrapped every teacher he’s met around his teeny tiny fingers. I am not worried that he will be unhappy; I accept he may be made happier by different things, people, or surroundings than another child, but I know by his squeals and peals of laughter that he is joyously happy. Maybe if the find-a-cure parents got more support and help in accepting their child, they would not be so desperate to find something, anything, to blame for their child not turning out as their expectations had dictated.

I think more education is needed, on what life can be like for someone with autism, and their lifelong “prognosis” if you will. And this information needs to come from people who have Autism and Asperger’s diagnoses, not from parents. The parent experience is different; we need someone to talk to, especially when our children are very young and/or very dependent on us for basic needs, yes, absolutely. I am not implying that such parental support groups and advocacy groups aren’t helpful or needed. But when it comes to policy, when it comes to educational aids, when it comes to how we classify and treat people with autism, we need to listen to the people who experience it first-hand.

I’m still scripting my video on Autism Speaks (an organization without a single autistic person on their Board) but I hope to have it up on YouTube in the next week, and when I do, I’ll post it here as well.