Where it begins

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

23 thoughts on “Where it begins

  1. Brilliant! I think you should submit this to as many national media outlets as possible. The time is ripe and we are ready.

  2. K, this is so beautiful and passionate. I want to share it on my school listserv. Can I? And yes, seriously. Submit to “this I believe,” newsweek, nyt. It’s gorgeous.

  3. Wonderful post! I agree completely. My school is having a staff-wide autism training this month led by our school district’s “autism consultant.” I’m not sure what it will consist of, but I am so thrilled to hear it. Because Jack goes to classes (art, music, PE) for an hour once a week, and those teachers have no idea what to do with him. This won’t solve all our problems, but like you say, it’s a single step.

  4. I always try to stress to my college students that there is a difference between “knowing” and “understanding.” All the knowing in the world does you no god if you don’t understand.

  5. Well we are far more fortunate than many as my boys have always had superb special education teachers, really dedicated professionals. Why do I mention this? Because a couple of years ago I found out that the Principal had been in special ed first. This meant that her ethos of inclusion, anti bullying and acceptance pervades the whole school, top down. So I would recommend that if we really want to make a difference to all our children’s experiences in school then the principals should always be picked from the special education teachers. Many might say that being a special ed teacher would not necessarily qualify a person to be a principal of a school, however, I would beg to differ. If anyone can multitask, shift gears and go the extra mile then it’s special education teachers, for them it would be a cake walk.
    Best wishes

  6. I totally agree with this. Most people are surprised when I tell them I’m on the spectrum as I’m not obviously/visibly autistic. These people simply are’n’t aware of all the different ways in which autism can affect people.

  7. Beautifully said. My son is about to move from a school where the principal “gets” autism to a school where the administrator is definitely less clued in. It feels like starting from scratch at best; like taking a step back, at worst.

    I once had a teacher tell me, “I wouldn’t have known he has autism,” but then go on to describe his behaviors that were manifestations of it. There are still so many people who don’t realize that autism doesn’t always “look” one way, and that different children on the spectrum may need completely different kinds of support.

    Awareness is good — but not enough.

  8. On this one I’m just along for the ride but feeling a sense of deep pride for both K and GP. I’m so ok when someone tells me my son is “special” but have often been irked at the scenario of his having “issues.” Well you know what? Even that’s fine now because if he has issues the whole world needs to subscribe to him and they need that subscription to those issues to be a standing lifetime/charter subscription. He’s not disappearing. I’m in your face every second. And this blog shows that with proper leadership and proud delivery GP and his special world of super heros will not be denied their right to lead us through to a better and SPECIAL world.

  9. I agree and one reason why my HFA son is homeschooled now through California Virtual Academy for his Middle School years. His 5th grade teacher was clueless.

    My other son is in sixth grade in an MRS class – mental retardation severe, he is one of five students, they go to a gen ed horticulture class where this teacher has given him bad grades. I dont understand why the tests are not adapted to my son plus working with the tools can be dangerous so sometimes his aide does not have him do that, so I am in the middle not knowing what should be done since I am not there and he meaning the aide makes these decisions for my sons safety, but the teacher knocks it down a point.

    Recently we had the AAC come to the school to get training for the teacher on pecs, Matt uses a go talk 9+ but every time we go to a new school have to get teacher traininng, strange that this teacher has 18 yrs experience but no experience ever with pecs, and now has my manual and hopefully he is reading it.

    What I find shocking is another student there is nonverbal and the parent and the aide knew nothing about pecs. Where have they been all these yaars and why starting now in 6th grade? We started in preschool with an AAC Assessment.

  10. Thank you, Kristen. A call to action for so many of us parents and caregivers and professionals. I am haggard after years of fighting, and sometimes find myself feeling grateful for merely competent or “good enough” efforts on my son’s behalf. He deserves better; our kids — all our kids — deserve only best efforts. Onward!

  11. Thank you so much for writing this. I have said for years that people hear “autistic” and think “Rainman” and they don’t see how my son fits into that worldview. You’re absolutely right that public schools need to educate staff better, like my son’s 3rd grade inclusion teacher who did not have a CLUE about the behavioral issues associated with my son’s aspergers and never bothered to read his file. Two years and eight suspensions later, our school finally agreed to an out of district placement at a day treatment school. But I can’t tell you how he suffered for the four years he was in inclusion.

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