In case you were not aware of autism, there’s autism out there

In case you may have missed it, there are autistics out there, and autism organizations want you to be aware of it this April. But only April, okay? The rest of the year, ignore the needs of those with autism who require special accommodations and assistance to live meaningful lives. Heck, if you believe some so-called “pro-autism” groups, you can even relieve yourself of that “burden” of a child and kill them and be held totally innocent by them. (Thankfully, not by the law.)

Okay, maybe I’m being too cynical. The intent of an autism awareness month is good because you always want to bring to the attention of the country/world something that afflicts between 1% and 3% of the population. (Contrary to the shrieks of horror at the “1 in 68” statistic, that number is a prevalence number, and prevalence is not indicative of an outbreak situation.) As I see it, the thing about autism and an autism awareness month, is that the subject has gotten too political, too nasty. Just the other day, I told you about anti-vaccine activists and their followers celebrating a mock story about Dr. Paul Offit being sick. I don’t know about you, but people who have “porno fantasies” of Dr. Offit being injured in any way really don’t have much of a moral leg to stand on when they demand for autism to be investigated:

Click to enlarge.

Click to enlarge.

You do not want the anti-vaccine, anti-science crowd to be the ones to promote an autism awareness anything, not even a special at Chili’s.

Instead of this whole “awareness month” thing, why not make it a point to be “aware” of the social and biological problems of autistics (and those with other neurologic conditions) year-round? Why have a whole month punctuated by constant infighting between autism organizations, fighting between pro-vaccine and anti-vaccine groups, and pompous declarations from elected officials? What does that help? Has any of that brought relief to the families of autistics with manifestations of their autism so severe so as to require special care and assistance? If it has, I’d like to see the citation, please.

I’m not much of a public policy guy, though I’ve been told that I need to be if I plan on moving up in the world. You don’t see a lot of epidemiologists be in front of cameras and such when it comes to policy, but we are in the background. We’re always advising people with more charisma and better faces for television and voices for radio than us. Just the other day, one of my friends got to go and brief a US Senator on BPA toxicity from water bottles. Another friend is going to her state congress in a few weeks to talk about vaccine exemptions. Both of them epidemiologists, but neither of them making a lot of hay about it. (Public Health Week is coming, by the way.)

Anyway, instead of this autism awareness month thing, I propose autism awareness year-round. I propose that we each find a reputable, reasonable organization that helps children and adults with neurological conditions live meaningful, productive lives, and that we volunteer our time with them. For that one or two hours a week or a month, let that time be our own “autism awareness” time. I bet we can do way more than we can by putting on a tee shirt or going to a restaurant to eat crappy food… Or lighting up our house blue. (What’s all that about?)

Autism Awareness, Understanding, and Acceptance

I used to think of autism as this horrible, debilitating condition that whose sufferers were mentally incapacitated, unable to live a proper life, a burden to their parents, and maybe even worthy of living in group homes and not much more. That was me about 20 years ago, when an autistic girl – totally non-verbal and prone to fits and self-harming behavior – was accepted into the middle school I attended. Being the idiotic teenager that I was back then, I joined in the gossip and somewhat bullying behavior of pointing at her and laughing. Deep inside me, I wished and prayed that I would never have a child with that affliction.

Growing up and opening yourself to new experiences, new people, and the science of things really does change the way that you look at the world, or even at the universe. April was “Autism Awareness” month, and I wish that they would have had such a wide array of educational material and communications when I was a kid. I probably would have understood what that little girl went through a little better. I probably wouldn’t have been such a [expletive].

My next interaction with a child with autism was when I had my first job out of college. One of my coworkers brought in her 6 year-old boy to introduce him to us. He was quiet and didn’t really say much to us as she took him around the office. I held out my hand to tousle his hair, but his mom grabbed my hand. “He doesn’t do well with touching,” she said. “He’s autistic, so those kinds of interactions don’t register the same for him as they would for you.” This perplexed me a bit. I was a science major in college, but I had not studied neurobiology enough to understand how things “register” in the brain.

The next interaction would be a couple of years later when I started studying epidemiology and biostatistics. The vaccine-autism pseudo-link was being pushed heavily back then (late 90’s, early 2000’s) because of Wakefield’s fraudulent study. So I learned the dry, impersonal definition of autism:
“A disorder of neural development characterized by impaired social interaction and communication, and by restricted and repetitive behavior.”
That was it. I no longer worked with the mother of the child with autism, so I had no real first-hand experience with anyone with autism. I knew what it was, but I didn’t know “how” it was. I was aware of autism, but I didn’t understand it.

That all changed once I really started getting involved in the discussion about vaccines and autism. The data that I had looked at – and some that I analyzed – wasn’t backing-up Wakefield’s claims. I stated this publicly as much as I could because the fears of vaccines were becoming more and more prevalent around me. People were vaccinating less out of their fear of autism. So it was time to understand autism.

The great majority of my understanding came from reading the blogs of science-oriented, reasonable people who explained their lives with autism. The most eye-opening part to me was that autism was not the debilitating and horrible condition that I had made out to be so many years before. People with autism can lead fulfilling and productive lives. They have a wide range of skills and abilities – some being “super” abilities, if you ask me. Even if the child with autism is non-verbal and lives in “their own little world”, autism surely wasn’t the “loss” that so many had made it out to be in their rants about their own experiences. Though I cringe a little to write that because, honestly, I don’t live their lives, so it is impossible for me to truly weigh their experiences.

Sure, there are challenges for people with autism and their caretakers. Yes, they are not typical, so their lives will not be typical. But none of that makes them any less of a person, or someone less worthy of being respected and cared for. That’s what I understood once I saw and read about the human side of autism, about the many parents who love and care and lookout for their children with autism. That’s when I accepted autism.

If you are confused, unsure, questioning, curious, or just want to know more about autism, I recommend the “Thinking Person’s Guide To Autism”.