A half hour ago an equal number of even noisier teen-aged students filled this gym and no teachers admonished them to stop making noise. Those “general” education students are labeled “typical” and this group of “District 75” education students is labeled “autistic.”
We don’t use labels like “retarded” any more, but phrases such as “he’s a District 75 kid” leave no doubt in anyone’s mind about a child’s future. Like so many New York City schools this one reflects the diverse ethnic melting pot of our city. Autism cuts across all class, cultural and ethnic groups. I wonder how it is possible to have a room full of children so segregated from their “typical” peers, more than three decades after the passage of the federal law, “Individuals with Disabilities Education Act,” (I.D.E.A.) which mandated that all children receive an education in the “least restrictive” environment. Especially when we know children with autism do better surrounded by “typical” peers who can teach them social skills more rapidly and effectively through play?
Autism is the new “diagnosis du jour,” knocking ADHD into second place. I have worked as an occupational therapist with students like these long enough to watch the epidemic unfold. I’ve read file cabinets full of research and spent countless hours teaching these children to write their names, tie their shoes, use the toilet, and most importantly, play with other children. I’ve studied the neurological underpinnings of traditional healing techniques at Harvard Divinity School and taught contemporary occupational therapy theory and techniques at universities.
Occasionally, I see children with autism diagnoses who could just as easily get a label of “quirky.” I see many, many more children who have earned their “autism” label justifiably. The current one in fifty statistic may be somewhat inflated, but it clearly and accurately reflects an epidemic.
The puzzle of autism fascinated researchers and clinicians even when it affected only a small percentage of the population. The epidemic has only increased our study and our knowledge. Though we may not have all the puzzle pieces, we have enough of them to know what works to “reverse” the effects of autism and how to slow down or even stop this epidemic.
So why do we engage in what Andrew Solomon in Far From the Tree calls “the slipshod brutality of giving up”?
Probably for the same reasons we cannot seem to make fuel efficient cars or grow our food without chemicals. Environmental toxins play a large role, both environmentally and also genetically, since parents pass along their own environmentally altered genes through epigenetics. We also know that these same environmental toxins play a part in the epidemics of childhood obesity and diabetes. We know food makes a difference, especially wholesome food, grown organically and prepared without sugar and other processed ingredients. In The Autism Revolution Martha Herbert, MD cites research that mirrors what Robert Lustig, MD documents in his book, Fat Chance: Beating the Obesity Epidemic.
We cannot find a “cure” because our attention gets diverted into sexy new drugs and candy coated cereals with “heart-healthy” and “gluten-free” labels. We have plenty of evidence, both anecdotally and through published research, on how to ameliorate and even reverse the effects of autism, and coincidentally ADHD, obesity and type 2 diabetes. The following very effective interventions require neither pharmaceuticals nor costly treatments: outdoor play; creative play; social play (i.e. games); and wholesome food. Last Child in the Woods by Richard Louv chronicles the importance of outdoor play and its role in children’s development. All over the US there are groups of parents, therapists and volunteers who use interactive play to improve children’s ability to communicate. Two of these treatment methods, Floortime and Son Rise, use play to build on an individual’s gifts, passions and strengths. In The Autism Revolution Dr. Herbert cites research to build a case for play, food and cleaning up the environment as strategies to prevent autism and reverse its effects.
If we know how to help children with autism why don’t we do it? Most likely because we find it difficult to make the kinds of sweeping changes we would need to see. No governmental agency wants to stop fracking, which clearly threatens our diminishing fresh water supply, let alone retool the automobile industry. Feeding children home-cooked meals and making safe playgrounds don’t support our struggling economy. In fact truly “curing” autism would have far wider and more devastating effects on our economy than Bernie Madoff or bursting the housing “bubble.” Nationally and globally we have made a collective economic decision to throw our children under the SUV.
Will eating organic foods and taking your child to the playground every day “cure” his or her autism? Probably not, because autism presents a multi-faceted and unique puzzle for every individual and every family. Helping children and adults with autism requires a myriad of conscious attention to details that can take 24 hours a day for life. Ask any parent of a child with autism about consciousness and detail.
Putting a whole lot of children with autism into a special school and teaching them how to sit quietly, fill out worksheets and tally up points for “good behavior” will do even less toward helping these people find meaningful ways to live in community and find some measure of happiness.
After recess, I provide occupational therapy to a slight fourteen year old boy who huddles over a map he draws from memory. I want this student, and every child I see, to find passions he can use to light a path to adult life. I ask this teenager what part of the city he’s drawing but I cannot hear his muttered response through the t-shirt he has pulled over his mouth and nose. I take out my phone and open a map application. I scroll around until if find the recognizable shoreline of Bay Ridge, Brooklyn.
Back in the mapmaker’s classroom, a sixteen year-old student, built like a Russian basketball player, works on choosing the correct picture from a selection of three small cards. The sixteen-year old likes to color but we cannot let him have crayons because he gets too excited covering every square millimeter of paper with color. Lately this young man becomes violent when people try to stop him or redirect him from coloring back to the tasks of sitting still with his hands folded, making no sounds and doing nothing more than looking out the window or choosing a card to please an adult.
As I watch the mapmaker pencil in streets, piers, parks and highways for Bay Ridge, the school psychologist stops by to tell me this teenager’s “colorer” classmate will soon go to a “residential setting.” I watch the mapmaker’s shoulders shiver as he listens. I ask, “Is it upsetting to hear us talk about your classmate in front of you?” He nods, yes.
What can I say to this middle school student? How much does he know about “residential settings,” and does he see this in his future? Does he dream another life for himself? Very few students escape from District 75. I envision the mapmaker in an office drawing maps with a beautiful selection of colored pens and markers – or maybe in Union Square selling his creations to people who want a hand drawn map to frame and put on the wall. I fashion this vision into a prayer.
When I travel around the US teaching parents and therapists how to get children to eat, I show a graph of autism’s growth from the 1990’s to 2010. The graph looks like the steep climb at the beginning of a really scary roller coaster ride. I mark off the points where we introduced genetically modified foods into our diet (just as the roller coaster takes off from the station) and the point where we took some mercury out of some of the vaccines (that point where the roller coaster jerks and connects to the gears that keep it climbing higher and steeper). I tell participants I’m not a statistician and I do not make any presumptions about cause and effect. Instead, as a Harvard educated theologian and an occupational therapist specializing in autism, I wonder, how many angels will it take for us to clean up the air, water and food supply? How many angels will it take for us to stop racing to the top and start eating together as families and making time for children to play?
Theologians love word problems with “angels” in them. Here’s what I believe based on a study of herd animals. When 51% of the animals looked at a water hole, the whole herd moved in that direction. When 51% of us have autism, or 51% of us love someone who has autism, then we will stop buying processed foods and start growing backyard “victory” gardens. We will begin sharing food with our neighbors and sharing gas in carpools. We will refuse to buy new cars, houses, appliances and clothes. Instead we will make music, art, child care and love. We will profoundly and radically change everything about the way we do business, education, health care, housing, and everyday human relationships; in a word, evolution.