Since the 1970s, April has been known as Autism Awareness Month. Some groups are now saying that awareness isn't enough…that it needs to go further. That is why they are pushing for April to become known as Autism Acceptance Month.
The impetus behind this drive for autism acceptance is the desire for true inclusion in the community. It's a motivation that resonates strongly with me, because some of my early experiences. When I try to pinpoint the factors that have helped me best reach my potential, the various turning points in my life that meant the difference between ability being recognized or overlooked, the same word repeats again and again. Acceptance.
There are many that hear the term acceptance and think that it means giving up – simply throwing up one's hands and ignoring the struggles and challenges of the individual. My experiences tell a different story. When I think of the people who accepted me most, they were also those who asked the most of me. What set them apart was not a difference in expectations, but in how they worked with me to achieve them.
What was the difference? Those that accepted me, worked with my neurology not against it. Their yardstick was not a mythical normality but the potential that they felt that I could achieve. They recognized that my way of doing and learning certain things was different. Instead of proceeding from the assumption that that was somehow wrong, they worked with it and helped me to find the place where my neurology and the world could safely mix.
Earlier this month, Al Jazeera’s interactive program The Stream, held a panel discussion with several members of the autism community, including Ari Ne’eman, president of the Autism Self Advocacy Network, Steve Silberman, Wired investigative journalist and author of the upcoming book Neurotribes: Thinking Smarter About People Who Think Differently, Shannon Des Roches Rosa, editor of The Thinking Person’s Guide to Autism, blogger Stuart Duncan, and Dr. Felice Orlich of Seattle Children’s Hospital. The discussion delved into many facets of the experiences of those with autism and their families.
The panel specifically discussed the various ways in which schools can fail to be inclusive. Shannon Des Roches Rosa told a story about how, in kindergarten, her son Leo was excluded from recess over an incident on the playground. Instead of trying to understand Leo’s behaviors, and the reasons behind them, they made the choice to exclude him altogether. Hearing such stories is heartbreaking and really makes me wonder about the state of inclusion in our schools. Shannon’s story got me thinking very deeply about own experiences, and what set them apart.
One thing I learned fairly quickly when I became involved in the autism community, and began listening to stories of others on the spectrum, is that my early experiences were typical in some ways and atypical in others. There are were lot of commonalities to be found among the experiences of sensory issues, social struggles, and the like, but what differentiated my experiences from that of many others one simple fact: I could remember a time when I truly felt a completely accepted part of my community. I’ve come to realize just how rare that is in our world.
I took it for granted at the time, but grieved greatly once I lost it – and to some degree still do. But the fact that I experienced it once, gives me the hope that the day will come that I, and others, will experience it again. I spent a lot of time thinking about the people who made up my community back then, and trying to put into words the things they did that caused me to feel as included as I did. I'm still struggling in some ways, limited by a child's perception…but I can tell you what I do remember.
Although I know that my differences manifested themselves in a number of ways prior to kindergarten, mostly they went unnoticed. My parents and those around me focused on some of my precocious talents…my memory, my capacity for mimicry, and precocious speech. The fact that my perfect precocious speech began with the set of words all my own was a cute quirk. My tendency to mimic everything in my environment including environmental sounds, animals, movies, and dialogue from TV shows, was an endearing oddity, a parlor trick to show off to friends.
Because my family was rather insular — I didn't have a lot of experience interacting with other kids, other than the kids in my daycare. I didn't have a ton of play dates, and I spend much of my time either playing alone or doing activities with my parents. Because of that, the nature of my social differences weren't really identified prior to kindergarten. What happened when they were is something I look back on frequently as one of the major turning points my life.
In her many talks and books, Temple Grandin often speaks about the teacher who turned her life around, Mr. Carlock, a former NASA space scientist. I believe that my kindergarten teacher was my Mr. Carlock. I remember her as a woman with boundless energy and creativity, and a thick accent. Days in her classroom revolved around activities and creativity. We did things and we made things...tangible things that are parents could use and I could play with: Candles, napkin holders, music boxes, and toys we called “Clip-Clops” (but other people call a Jacob's Ladder).
The ambitiousness of the projects that we undertook, made it absolutely obvious at the outset that she presumed capability in us beyond what many other adults would. That carried through to how she treated me. While she was the one who first identified to my parents that emotionally I wasn't as “mature” as my peers…and was the one who made the determination that I wasn't yet ready to move on to first grade, she never lost sight of my abilities, and she never let me lose sight of them either.
While delivering the news to my parents that I would need to repeat the grade, her focus throughout was on my capabilities. During the conversation, she emphasized to my parents over and over the things that I could do, especially if properly supported. She knew that I was sensitive and could very well take the news badly, so she worked closely with my parents to present the news in a way that wouldn't discourage, would make me feel special and minimize the stigma and judgment I experienced from other kids.
Her plan began before my first year ended. She and her teaching assistant staged a drawing. The “winner” of the drawing “got” to become her special assistant for the next year. Then, she made sure it happened. She knew I would struggle with change — and she took it as her calling to come along with me in my journey. For some teachers, it would have been easier to let me be another teacher’s problem, but she was committed helping me be the best I could be. She wasn't willing to trust that to another teacher.
What happened next was strongly brought to mind when I was watching the Al Jazeera broadcast, when Dr. Felice Orlich discussed the results of a recent study they had done at Seattle Children’s hospital which showed the great efficacy of peer mentoring for those autism spectrum — how it helped students to be included, to feel less lonely, to be better protected from bullying, and have more friends. The results that she described were no mystery to me, because I had witnessed it firsthand in my kindergarten classroom, with a twist.
My teacher knew that I liked to share the things I knew, and that I socialize best when provided a structure to do so — when I had a task to perform and a purpose for the communication. She used that trait. By positioning me as her “assistant” rather than a kid who was struggling, she turned my prior knowledge of the classroom into a benefit, something I could use to help the other kids. Instead of my peers mentoring me, she set me up to mentor my peers. In the process, they came to see me as a valuable member of the class — someone who helped them when they needed it. Meanwhile, I learned to become more comfortable with interacting with other kids. Looking back years later I can appreciate the ingenuity of her approach, and I'm grateful for it beyond anything I can say.
I can't help but wonder, looking back on this experience, how different Shannon Rosa’s son, Leo, would've been treated if his teacher had been more like mine. A person who insisted on inclusion and went to great lengths to make it happen and who did not allow differences and challenges to block her view of the capabilities and value inside every child. I like to think this experience would have been different.
It was only years later, I would learn that my teacher, a gifted artist, had been offered the chance to apprentice with a famous artist but turned the opportunity down in order to take up teaching. When she did, she did so in the public school system, although I’m sure that she could have been paid much more if she worked in an exclusive private school. And I found out that, not surprisingly, that prior to joining the public school system, she had co-founded a school for children with autism and neurological differences.
In his book, The Power of Neurodiversity, Dr. Thomas Armstrong imagines how things would look if a culture looked at flowers in the same way our culture currently deals with differences between people. Instead of being seen as flowers who each have their own specific beauty, they are divided: Roses are “normal,” sunflowers have “hugism,” bluets have a “growing disability,” and calla lilies have “Petal Deficit Disorder.” My teacher also used flowers in a similar metaphor – she saw each child as a bud with infinite potential who, with the right support and nurturing, would become our own unique, but beautiful flowers. Again, I’m not surprised at the similarity.
As I go over my path in life, I go back over and over again to this period in my life, and I ask myself: Would I be where I am today without this woman in my life? I really don’t think I would. I’ve had a lot of teachers – some more effective than others. Those who did not honor my differences, who held as their goal the idea that I should be more more “normal,” more “indistinguishable from my peers,” were not the ones who made the difference. In fact, it was the opposite – their approach harmed me, in many ways.
When I look at those teachers who were most impactful in my life, like my kindergarten teacher, they were the ones who treated me with compassion and acceptance. Teaching me to work withmy differences instead of against them made a massive difference in how I approach life, how I value myself, and how far I’ve been able to get in life. That is why I believe in acceptance.
Because it works.
My first book, Living Independently on the Autism Spectrum, will be available in stores in June 2013. It is currently available for pre-order at many major retailers, including Amazon and Barnes and Noble.