Autism. It’s in the news, on talk shows, in magazine ads, on billboards. It’s in our schools, the house next door, on the soccer field. Autism is prevalent—statistically and realistically—it’s out there.
And so as this month of April becomes the month to build awareness, to wear ribbons and attend events and walk, run, bike to raise money, I find myself asking, is it enough to simply be aware?
Because now that we have everyone’s attention, maybe we should say something. Maybe we should take the discussion beyond our philosophical differences on cause and cure, and 1 in 150. Maybe we should look toward education and explanation, knock down the stereotypes and confusion. We can do more than show the face of autism—we can expose its very heart and soul.
As I think about this and the work to be done, I can’t help but think about our schools. And while some schools and some districts do a much better job than others, I believe we still have a long way to go.
I was thinking this morning about the teacher who once told me, “I’ve never had a child with autism in my class.” This said despite the fact that she was teaching an inclusion class, a class where IEPs were not unheard of. A class that did, in fact, include a child with autism. I was thinking, too, about the mom who is trying to get some organizational tools in the classroom for her son, and the resistance she has met from his 3rd grade teacher, who seems to think that his lack of focus is nothing different than what any nine year old boy goes through. And then there are the kids who are teased, sent to the principal for behavioral issues, physically restrained, ignored by their peers, marginalized, or—in a truly outrageous example—voted out of their kindergarten classroom, Survivor-style.
We can do better than that. We have to do better than that.
For those of us whose kids have IEPs or 504s, who are desperately trying to navigate the public schools with dignity and grace, who are faced everyday with educators and administrators and other parents and their children who absolutely don’t get it—we have to say and do more.
How do we take the conversation beyond the simple truth of “he has autism”? How do we express all the shades of grey in our world? We have to educate respectfully and generously however and whenever we can. We have to use our language and our words to sweep away the half-truths and false assumptions. We have to be willing to put ourselves and our kids out there.
In some ways, it all comes back to the classroom. I know there is much talk about the woman in the grocery store who stares daggers and declares, “That child needs discipline,” and I don’t deny that within our communities at large we need to foster greater understanding and acceptance. But if we don’t have appropriate supports and respect in our schools, how can we expect to have them elsewhere?
Most everyone I know has heard of autism. They have awareness. But they don’t all know what it means. They might think of kids, not adults; they might think of boys, not girls; they might be looking for a visible disability, a clearly defined difference. And yet, the true mystery of autism lies in its subtleties, in all its many variations of almost and nearly and not quite.
At my recent IEP meeting, I was surprised to learn that our district is planning to implement a small scale mentoring program come September. The idea is to create a network of peers supporting peers, to increase awareness and understanding, to empower kids to do the right thing. It’s a starting point. A step in the right direction.
But what I’d love to hear more about are teachers attending workshops, staff role playing and blanket policies dictating no tolerance for physical or emotional abuse. I’d love to hear that the staff member who teased a seven year old boy with pdd-nos for crying in front of his peers was sent to sensitivity training or at the very least, told to shape up or ship out.
I would love to see our schools become a safe and nurturing environment for all our kids—across the board, in every district in all 50 states—so that no parent is forced to choose between the lesser of many evils. Awareness, yes. But education, too, the hallmark of public school. More training for our teachers, parents reaching out to other parents, and the stigma that surrounds special education tossed aside once and for all. It doesn’t matter what we call it—ASD, autism, aspergers, ADD, sensory processing disorder—or what it looks like. It only matters that the differences are expressed and explained and that acceptance and compassion follow.
It needs to come from the top down, from the bottom up, from the sides in. And we, as parents, have to do our part. We have to teach our children well, prepare them to handle the inevitable bumps in the road, and we have to tell our stories over and over again—in the schoolyard, at PTA meetings, at lunch with the other moms. We have to talk to anyone who will listen. We need to be open and honest and hack away at the fear of the labels and the stereotypes of kids on both ends of the spectrum and every point in-between.
We need to be brave and proud and stand up for our kids and ourselves, so that no child will ever be voted out of kindergarten again or physically restrained or marginalized in any way. And no teacher will ever be able to say, “I’ve never had a child with autism in my class.”
Let’s educate our educators, so that they, in turn, can stand shoulder to shoulder with parents on the front line, fostering greater understanding, compassion and acceptance for generations to come.
That’s where I want awareness to take us. Back to a place where we have something to learn. It’s a tall order, I know. But I think we might be ready.
“A journey of a thousand miles begins with a single step.” ~Lau-tzu