I first heard the word autism in high school, probably around 1975 or so. When I became a psychologist (no, not specializing in autism) I came to understand it as a severe disorder that resulted in lives deeply and negatively impacted.
In 1995, my son Ben was diagnosed with autism so severe that when he turned 12, we placed him in a residential school because life at home was no longer viable. Whatever we imagined it would be like someday when our first son moved out, this wasn’t it. For us, finding the positive in autism is like looking for the bright side of cancer. There’s no way to sugar coat it. Autism has destroyed Ben’s life.
My wife and I are not “glass is half empty” parents who refuse to see Ben’s “differences” as something to be embraced. Of course we love Ben, enjoy Ben, do all we can for Ben. But his differences are huge deficits that make it impossible for him to live, unaided, in our world. We worry about every stage of his life, because Ben will need care, parental-level care, until it’s his turn to pass on. Few like to say it, but many parents harbor the desire–as anti-instinctual as it gets–to outlive our eternally childlike children. “Who will love them when we’re gone?” is the thought that keeps parents of autistics awake, at all ages. And there is nothing positive about it.
Asperger’s Syndrome
Around the time Ben was born, a new form of autism was identified on the spectrum of mental health called “Asperger’s syndrome,” more commonly termed Asperger’s Disorder these days. It’s used to describe certain high-functioning autistics. Aspies–a term used by many to describe those with Asperger’s Disorder–often think about the world and act in ways that most of us would not consider “normal.” Their different-ness may require special understanding and attention from us neuro-typicals, but many adult Aspies can live independent and fulfilling lives.
Something that distinguishes an Aspie from a more classically autistic person is they are aware of their own different-ness. They can express their thoughts and feelings about it – as opposed to someone like Ben, who has never created a sentence of his own. So while I have no proprietary interest in the term “autism,” I am growing weary of explaining the difference between “severe autism,” as I have come to describe Ben, and someone’s “autistic” nephew who will be graduating from Princeton next month.
A Modern Disorder
Since that first time I heard “autistic” 35 years ago, it has shifted from an obscure term (and a severe disorder) to a word with celebrity cachet, in large part because the numbers have exploded — from 1 in 10,000 diagnoses of autism, the statistic quoted to me in 1995 when we first entered the arena, to one in 110 currently. The wider breadth of behaviors now included in the diagnostic category accounts for some of that growth; as does the need for that diagnosis to qualify for various federally funded special education and therapy programs. But how much of the statistical mushroom cloud reflects those factors versus a true increase in autism is a major question, and federal funds for research and treatment have not kept up. What is available is spread among a wide variety of programs, so basic research into the causes and possible cures for severe autism suffers as a consequence.
Ben’s Way
I understand the extraordinary challenges Aspies face. But the lights that await them at the end of their tunnels can be blindingly bright compared to the bleakness facing the “classic” autism sufferer. And yes, they are sufferers, not because others won’t accept their different-ness, but because they are constricted by their own internal chains and plagued by obsessive anxieties and a minimal ability to express their pain, or pleasures.
Ben cannot articulate his opinions about autistics versus Aspies versus neuro-typicals, if he has them. Ben, now 16, has a hard time articulating a toothache, though his behavioral seizure (i.e. a tantrum) can indicate that something is causing agony. A productive and independent life is not in Ben’s future, nor most of the earlier generations diagnosed with classic autism.
As it is now defined, autism afflicts a range of people with IQs that stretch from mentally retarded to genius. Many need huge help simply ordering in a fast food restaurant; forget about getting a job in one. Others are graduating at the top of their college class. How does that make sense?
Aspies ARE Different
Aspies sometimes seem to me to take offense at being lumped in with the whole range of people with autism, and I can’t blame them. Lumping everyone with autism together makes it harder to discuss, harder to research, and certainly harder to cure –– especially when a sizable chunk of Aspies take offense at the idea that they even need or want a “cure.”
But if he could tell you, Ben would say he does want to be cured. And separating Aspies from Autistics might help that happen. Or at least, it would make it easier to talk about.
