We have often reflected in this column about the remarkable qualities that emerge in everyone when people of all abilities — including people with developmental conditions like autism, Down syndrome, cerebral palsy, and so on — engage fully with each other. Why is this, and how does it work?
Driving home from a conference recently I listened to an interview that offered intriguing insight into this question. Paul Collins and Jennifer Elder are the thoughtful parents of a child with autism and authors of several books on their experience. Through their own research and reflection, they have come to see autism not just as a spectrum of disability, but rather as part of the broader spectrum of human experience. Autism, after all, is not just about some quality or capacity that is missing in their child, but a situation developmental psychologists call “cognitive scatter” in which some capacities are delayed while others are amplified.
For Paul and Jennifer, autism is about a child who lives mostly in his own world (the word “autism” itself is derived from the Greek word for self) but possesses an extraordinary aptitude for logic and ability to focus. They have come to realize that these qualities, which present themselves so dramatically in their child, are quite common in their own extended families and in society at large. It’s just that in their child certain traits are “over-expressed” resulting in, for example, a remarkable ability to focus on things that interest him but difficulty understanding the experiences of others and in particular the emotions felt by other people.
The Center for Disease Control estimates that nearly 1 in 110 children exhibit characteristics common to the autism spectrum with 30 percent exhibiting extraordinary capabilities that far exceed those of the rest of the population. Many people with autism possess a natural understanding of music, have perfect pitch, are able to play a tune perfectly after hearing it once, are fascinated with bus and train systems, and excel in professions that require an advanced “systematizing tendency” like software, mathematics, and engineering.
Yet despite their brilliance in the realm of systems and logic, they are perplexed by the complexity of fellow human beings with their illogical and unpredictable emotions. Like Dr. Spock in Star Trek, people with autism often have one foot in each world — the world of abstract logic on the one hand, and the messy world of human experience and emotion on the other.
I was particularly moved by Paul’s recollection of the day they received the diagnosis. When they entered the doctor’s office their son was simply himself, the child they had always known and loved, with all the many qualities that make him who he is. But the diagnosis felt like something that “happened to” their child, a transformative event that made him somehow seem different when they left the doctor’s office — an autistic child. Yet the qualities that make him autistic are qualities that most of us have at one level or another and can in fact be extremely useful. It is when these qualities are deemed to be “over-expressed” that we apply the label with all of its consequences.
Disability in this sense is not about what is missing but about what is abundant, even too abundant. Autism in particular involves an overabundance of one defining quality of the human species, the capacity for abstract logic. Many species are social, but only humans are capable of abstract logic. But what does overabundance of this most human of traits really mean — especially when the capacity to be social is under-expressed?
Paul and Jennifer remind us that different families experience autism differently and that there can be profound difficulties including frustration, overstimulation, depression, becoming physically difficult to manage, distress, and so on — difficulties that led previous generations to institutionalize their autistic children. But medical technology increasingly enables mitigation of the most difficult challenges, so that Paul and Jennifer can say they have a “happy and healthy autistic child,” a combination of words not often heard from previous generations.
To think of autism as the over-expression of a key human attribute strikes me as profoundly paradoxical. One the one hand, it helps explain why diversity and inclusion so often evoke the best in everyone. What classroom, workplace, or community would not benefit from such an overabundance, a turbo-charged injection of what it means to be human? On the other hand, we know life can be extraordinarily difficult for families experiencing autism. No one I know would ever consciously choose this path. What do you think? What is your experience? Share your story at inside@nwcenter.org.
Tom Everill is President & CEO of Northwest Center.
