A year ago I was still in the process of deciding to pursue an assessment. I don’t recall even being aware myself of various autism “awareness” activities last April or any previous April. I screen a lot of things out, but I also absorb a lot of information. I didn’t have an opinion, positive or negative, about any past efforts. The various awareness efforts were completely off my radar.
I also don’t believe I was unusual in that regard. I had heard some of the autism scare stories. I knew about the vaccine controversy, of course, and how thoroughly it had been debunked. I had seen one or two representations of “Asperger’s” on TV (in dramatized forms that looked nothing at all like me). And … that was about it. I don’t recall noticing anything about an awareness month. I had never heard of Autism $peaks. My online sphere didn’t really intersect with the rich online autistic community.
So I don’t believe the only issue we face is a need for greater acceptance. We do need greater awareness since acceptance rarely flows from ignorance. But we need accurate and informed awareness. Tales of the suffering endured by parents of autistic children aren’t helpful. My attitude as a parent has always been captured by Sidney Poitier’s character’s response to his father in “Guess Who’s Coming to Dinner?” Our kids owe us nothing. We chose to have them. We owe them our best effort to give them a start and a place in this world. And that’s true no matter how hard or difficult it is. That’s the price of real love, especially the unconditional love we should have for our children. And our kids do not owe us for any sacrifices we might have made raising them. As parents, that’s what we were supposed to do.
Of course, if you view anyone as a “burden” that perspective becomes a self-fulfilling prophecy. I refuse to believe that most parents of autistic children fly the martyr flag, just some of the noisiest ones. Unfortunately, the noisy ones keep having their voices amplified.
I also don’t think we need awareness in order to fund the pursuit for a “cure”. Autism is neurodevelopmental. My brain formed along autistic patterns in the womb. I have no non-autistic identity even though I only recently discovered that the way my brain functions has a name. If someone “cured” me of autism, they would effectively wipe me out of existence. Moreover, research is increasingly revealing how deeply intertwined autism is in humanity as a species. Autism develops from complex and varied combinations of genes, at least some of which are also responsible for increased human cognition. In certain combinations and expressions, the dial gets turned farther than it typically does, but autism appears to fall within the range of normal human variation. In order to prevent autism, you would have to alter the broader human genome to exclude autistic combinations and expressions. In order to “cure” autism, you would have to change a person’s genes, the epigenetic expression of their genes, and somehow alter the developed structure of their brain. Thanks, but no thanks.
We do need the broader population to understand the range and variation of autism. We need informed awareness. Awareness does not automatically lead to broader acceptance, but it’s a necessary step. And right now, there is a deficit of informed awareness, at least in the US as a whole. I’m sure there are areas and pockets with greater awareness, but for the most part any awareness that exists is poorly informed.
Of course, it doesn’t help that the most broadly visible autism organization promotes misinformation and uses scare tactics to raise money, most of which goes to nothing useful. Since much of the awareness that’s currently out there is negative or wrong, we’re operating at a deficit and I don’t see any quick or easy way to change that reality. It looks like a long uphill slog to me. Still, uphill struggles are nothing new to me. That pretty much describes most of my life. And since I can’t change the way my brain works (not that I would be inclined to do so if I could), I’m in it for the long haul.