My son was born in the midst of a blistering hot week in late July of 1988. Born 3 months early, at five pounds, and dropping to four within a day, I could just about fit him in the palm of my hand. It would be Thanksgiving before he came home from the hospital. Complications followed surgeries and surgeries followed complications; those were dark, blurry months, but by his second birthday his medical team gave him the green light. To them, medically all was well.
But being good, and justifiably concerned, parents, we called upon the team from Early Intervention who, after several months of observation and various therapies, deemed him free from further services around the turn of his second year. Two clean slates gave us a palpable sense of relief as he moved though his not-too-terrible twos. He was vocal and funny, his energy was endless and he was alert and curious as could be. And then, at around two-and-a-half, the lights seemingly went out from behind those bright blue eyes. The little boy we knew had vanished almost overnight. We watched him retreat into the far-away world of his complex mind, a place where he has lived ever since.
In the summer heat of 1988, Autism was just as far away from our collective thinking as global warming, and the term, Asperger’s Syndrome, hadn’t been embraced yet. There were no other parents like us, the schools were totally unprepared for his arrival, and without warning or fanfare our world began to get smaller, too. There were no play dates or birthday parties, and playground time was spent wandering the perimeter, alone and off in is his own world. One wise educator described Charlie’s experience as that of a riding the bow wave that pushes ahead of an enormous ship, and yes, there he was at the very start of what has become a tremendous series of waves following behind. It wasn’t until his middle threes when a psychologist from Holderness, New Hampshire took one look at Charlie and said, “Asperger’s”. We had a lot to learn. We studied the Federal Special Education Case Law book, stuck yellow notes on hundreds of relevant pages, and the fight began. To their credit, the specialists and teachers did everything they could to help this bright and beautiful little boy, but the fact remains that they simply didn’t know what to do.
When I was in college in the early 1970s, a friend who was studying early childhood education brought a little boy who was Autistic to the apartment for an evening. Shortly into his time with us he melted down, exhibiting a series of unhinged actions which, ironically, I would come to understand many years later. In an instant, this angelic child was screaming, rocking, and banging his head against the wall, all for no apparent (at least to us) reason. My friend quickly gathered him up and carried him outside, and then I imagine he was returned to the safety of the place where he lived. It was that stark definition of Autism that filled my thoughts when Charlie’s diagnosis began to take shape in the early 1990s. Attempting to help him, psychiatrists experimented by pushing medicine after medicine on him, sometimes several at once, and often with dire effects, until at last he exited puberty and settled into the calm, kind, and accommodating young man he is today.
Throughout Charlie’s 27 years there have been professionals who brought their evolving wisdom to his case, some more effectively than others, but all with pure intention. Much like a teaching hospital where young medical students learn by practice to become doctors, so it was with him. Now, with famous books, and famous people, and movies and television shows depicting people on the spectrum, the world of those with Autism is a less lonely and more understanding place. Except, of course, for him.
By the time I was his age I had found a career, traveled the world, driven cars in traffic for a decade, and had girlfriends. None of these have come to him. Yes, he has graduated from college, found a good job, and lives on his own in a lovely condo. He has also mastered the vast compendium of knowledge about film, but has not yet found a way to share that love with the wider world. It is the purest of folly, of course, to make any such comparison between any father and a son, both for his sake and mine.
Charlie is still riding the fresh crest of that huge frothy bow wave of Autism. And as is always true of pioneers, the way forward is never clear.