Autism Awareness month has begun and tomorrow is World Autism Awareness Day. Some friends on the spectrum out there on the interwebz have expressed their frustration with the whole concept, while other friends on the spectrum have jumped in wholeheartedly, advocating wearing various colors, but celebrating, advocating, speaking out about autism in whatever way we feel best suits us.
I commented to Kathleen that if we really wanted to raise awareness of autism, we'd all collectively agree to show up at our local walmarts at the same time, all 730,000 plus children and families and who knows how many autistic adults (but surely even more than that based on prevalences rates), and we'd raise awareness awfully fast! What a sight that would be, a wonderful display of the incredible diversity of humanity (although to be fair, if you've seen People of Walmart's site, you already know your local walmart is the place to go to see us in our infinite variety).
But back to the serious stuff: even in this, the idea of increasing awareness, there is division. While there are a good number of parents who want to push for more awareness so that there will be acceptance, appreciation and accommodation, there are parents who want to push to create awareness so as to bring about an end to autism.
I read on a facebook friend's wall a comment about hoping to one day look back and say, do you remember when people got autism? Oh my. My first thought was, what the hell? It isn't catching! It isn't something you get! Sigh. I looked at the person's page and debated saying something, defriending, because, wow, not how I see autism at all and not something I want to really have to see, you know? I ended up saying nothing and not defriending; this isn't someone I had really conversed with, and when I looked at their page, I saw that they had joined many groups that didn't indicate a desire to rid the world of autistic people, so I stayed my hand. I thought, hmmm, maybe a bad choice of words? Or maybe we have as much work to do within the community as we do outside of it?
The problem is that even many well-intentioned parents (see Liane Kupferberg Carter's post at Huff and my comment in a blog from earlier today) just don't get it. They compare autism to diabetes and cancer; they call it evil and insist they love their children, just not the autism. As if autism were something that were done to the child, outside the child's neurology, an add-on, a mistake, something to be avoided. One parent over at Carter's post opines that you wouldn't wish an autistic kid on someone, would you? Oh my.
I wonder when I read these things what's going on with these individuals, how they come to hold these positions. I have diabetes, and I've never considered it evil. It's a disease to be managed. I have other physical illnesses, too, and they are to be managed, as well. Boy, I'd love to not have migraines, but I don't even think of them as evil. I wonder if it's semantics. Does evil not mean to these people what it means to me? Have we become so loose with language that it's tossed around lightly? I don't think so in this case. I think they mean the same thing by evil as I do, and it makes me wonder if these folks have any inkling of how the human body works? I mean, I have a long ways to go in my understanding of it, but I know enough to know that what happens in our bodies, good, bad or otherwise isn't evil. Tragic, perhaps.
Autism isn't something that's done to you. It is an inseparable part of the person's neurology. There are, it appears, verifiable differences in neural structures. There is undoubtedly an interplay of environment and genetics, but no reliable scientific evidence to think that this occurs after birth, despite the numerous anecdotes out there to the contrary. We are such fallible creatures, so incredibly capable at weaving narratives that justify our decisions and indecisions, that rewrite our histories without so much as a by-your-leave to our conscious selves. We see what we want to see, and once we believe something to be true, we'll create a past that's continuous with our present reality. It's why politicians (and so many of us) will continue to deny we said something even when shown our past selves saying what we deny we said. Oh no, we'll say, I may have said that, but what I meant was this...
Too many parents of autistic children read the words not of autistic individuals and what their experiences, perceptions, and feelings are, but the words of other parents who buy into desperation and woo, or just as bad, who conceive of autism as an enemy to be fought. We must, as parents to children on the spectrum, listen to those who have gone before our children, who experience the world in similar ways. We should look at our children and ourselves and see the intersections, the commonalities, acknowledge that broader autism phenotype, and recast autism from a disease, a scourge, a thief who steals our real children away into what it truly is: a neurological difference that at present causes significant impairments to many who are diagnosed with autism. Not all impairments can be removed, even if society shifts heaven and earth and suddenly sees, accepts, appreciates and accommodates, but the burdens that autistic individuals bear because of an uncaring, unseeing society will be mitigated. Lives will be made better. Pain, bitterness, and despair will be reduced.
On this day, this week, this month, and every other day, we should seek to help, to reach out in compassion, to those who are still new to this journey, to gently remind them that this isn't about them, the parents. Autism awareness is about the individual on the spectrum, about seeing them, their value, their worth, and appreciating them as they are: human in all its glorious diversity.