March 12, 2009
Last year I stumbled across a book called “Look me in the Eye.” As a parent who spent years trying to get her son with Autism Spectrum Disorder (ASD) to do just that, the title intrigued me. The insights of author John Elder Robison were even more fascinating.
Robison was diagnosed with Asperger’s syndrome as an adult, after spending much of his lifetime not understanding why he was different from others. He described how as a child he was often scolded for not looking others in the eye when he spoke to them.
Since visual input is distracting, he explained, it is difficult for him to make eye contact when speaking to another. Reflecting his Aspergian perspective, he wrote, “I don’t understand why it is considered normal to stare at someone’s eyeballs.” When I set the book down, I had one wish. Someday, I would like to have that kind of insight into my son’s mind. From the time our son was diagnosed with ASD in 1993 until just recently, I endeavored to fix a condition that few understand. With each symptom that emerged, I embraced whatever solution seemed reasonable and affordable. When he couldn’t speak clearly or hold a conversation: speech therapy. When he couldn’t write legibly or tie his shoes: occupational therapy. When he couldn’t sit still or sleep, we put him on medication. When he was angry and anxious, we added another medication and took him to professionals to try to talk it out. When his GI tract raised havoc, we tried a succession of supplements. More than once, we walked to the precipice of chelation therapy, only to pull back. While he improved, he was still isolated and unhappy, preferring to bury himself in books and pass the time with his electronic companions – video games, DVDs, TV, and the Internet.
All that changed 18 months ago when, we learned of a school in New Hampshire for boys with high scholastic ability but social challenges that prevent them from flourishing in larger schools. Placing our faith in strangers we immediately trusted, we enrolled him in the school, which was the antithesis of everything he had experienced. The parade of professional appointments ended, as speech therapy and social skills training were replaced with unavoidable interactions in the dormitory, classroom, and dining room, as well as mandatory outdoor activities like hiking and snowshoeing on 1,700 acres of forest, fields and wetlands that host beavers, bobcats, birds and more.
Once he settled in, his headmaster encouraged us to stop his medications and supplements. His classmates’ parents assured us that they had done so, with remarkable results. Although we could not fathom how he could function without his medication, we took another leap of faith. Amazingly, his speech has never been clearer, his GI symptoms have subsided, he sleeps through the night, and he reports that he is more patient and focused than ever. He is learning to walk away from teasers and to apologize to those he offends.
Recently, we spent an unforgettable weekend with him at his school. Healthy, not quite happy, and admittedly “motivationally challenged,” our medication-free teen is beginning to perform academically. He is slowly abandoning his defensive posture and showing others the side of him we know and love. Without his electronic escapes, a talent and appreciation for art and writing has appeared.
Most exciting of all, like Robison, he is learning about himself and sharing his insight with others. He has read and absorbed many cultures’ versions of mythology. He frequently talks out loud to himself, an odd behavior to those who observe him, but in his mind, a creative process at work. He explained that when he does so, he is engaging in a dialogue with himself about things like mythology that constantly run through his brain — ideas born from his reading, his experiences with video games and his own imagination.
When he flaps his hands, it is because he is excited about the things that are going on in his brain – the movies in which he inserts himself, because they are more interesting than real life.
When it was time for the school Vaudeville show, our son stood before his peers and their parents, his faculty and staff, and shocked his proud parents by clearly reading a poem that shed further light into the workings of his mind.
The Magic Forest
By J.M. Sullivan
The magic forest, with trees so blue and sky so green,
Where yales and unicorns frolic freely
Where phoenixes and dragons and pegasi and griffens and
Hippogriffs and rocs fly,
Where jaberwocks and gerrymanders and basilisks slither,
Yes, the magic forest, where satyrs and fauns and centaurs meet in peace;
Where hippocampi, mermaids and krakens swim,
Where enets roam and leprechauns dance;
The magic forest, where Minotaurs graze,
Where big feet and abominable snowmen roam;
The magic forest, with fields of purple and streams of orange,
With corn of silver and potatoes of gold;
The magic forest, where you can fly.
Just believe what you want to believe.
The magic forest. It exists only in my imagination.
When the weekend ended and we shared our last tearful embrace, I whispered into our poet’s ear, “Maybe this special place is your magic forest.” His talents unleashed, I hope he will paint pictures or write a book and help the world to understand what I have longed to know — what goes on in his fascinating brain.