Recently, 60 Minutes did a moving segment called, "Apps for Autism." In it, they demonstrated the impact that the iPad has had for many people with autism who are unable speak. The segment demonstrated clearly how new tools and information can lead to breakthroughs that parents and professionals might previously never have expected.
I was particularly impacted by the section in which they show a young man named Nuno interacting with the iPad. At 10, Nuno doesn't speak, and was previously thought to have "the IQ and attention span of a toddler." Yet, once the iPad is placed in front of him, he demonstrates a vocabulary and understanding that belies this assumption. And, we learn in an interview with his teacher that while exploring music on the iPad, they discovered a surprising fact: Nuno is a connoisseur of opera.
Nuno's case is a demonstration of what many parents and people on the spectrum have said for many years — that current diagnostic tests and techniques underestimate the capabilities of those on the autism spectrum. Some experts are now beginning to agree. In many cases, it's not a question of whether autistic people have intelligence, it's a question how they can communicate their intelligence.
When I write about my experiences living on the spectrum, I spend a lot of time thinking about the trajectory my life has taken, and tracing the source of the accomplishments in my life. Why is it, I wonder sometimes, that I'm better able to "fake normality" than others? (Of course whether all would want to do so is another story.) What abilities was I able to develop, that others have not? And why have I have developed them?
When I look at my social successes, for example, much of my success is predicated on the awareness of body language. But, body language is something those of us on the spectrum are supposed to have problems understanding — so how do I explain that? How did I build those skills?
I trace that back to a summer afternoon when I was about 11 years old. That afternoon, my mother and I had visited a local used bookstore — a weekly ritual. In the doorway, my mother turned to me. "You may choose ONE book to buy," she said, and sent me off to browse.
She did the same. When she was done, she called to me from the checkout. I snatched the book I had been perusing from the shelf, and trotted to the counter. "Did you find the book you want?" She asked. In answer, I slapped the big tome down on the counter.
Perplexed, she picked it up and looked at it. "Are you sure that this is the book you want?" She asked, as she took in the big block letters across the front. What did her grade schooler want with someone's cast off Psychology textbook?
"Yes," I responded immediately. Undoubtedly sensing a bit of Aspergian fixation in my voice and manner, she shrugged and added it to the purchases she had laid on the counter. She wasn't one to withhold knowledge and learning. If it was what I wanted, why not?
I was antsy and anxious all the way home...I wanted to continue my reading. When my mother opened the door, I raced through it and up the stairs to my room. Flopping down on my stomach in a sunny spot on the carpet, I opened the book and began flipping through it.
I skipped the spots about babies and child development...I liked babies. It was when they got older, when they talked, that I began to have problems. As I flipped through a subsequent chapter a phrase stopped me cold — "body language." Ah, now this was interesting. You mean you could tell what a person was thinking or feeling, just by looking at looking at their body and facial expressions?! For a kid that loved puzzles and secret codes, I thought this was coolest thing I had ever heard.
As I read, I found myself reliving and reassessing incidents from the past...and suddenly they made sense. I thought of an experience I'd had a few years earlier, in Second Grade. The class was lined up to go out for recess, when our teacher was unexpectedly called out to the hall, leaving us temporarily unsupervised. A couple of my classmates decided to take the opportunity to start roughhousing.
Standing quietly in line, I was suddenly slammed from behind. Now, there was something warm and weird against my cheek. Rough. In front of my eyes was a strange tableau that reminded me of the nature close-ups that were a staple of the Science magazines I liked. Green, with odd little swirly structures that looked a little like spores. I turned my head a little. I felt the scratchiness against my cheek, and watched the tableau shift. I began to realize that something was different about my body, too. I didn't seem to be upright.
I was slammed backward again, as a roar sounded in front of me. "Would you get the hell off me! I'm not your damn father!" the boy in front of me bellowed. I stumbled and caught my balance, then looked around me. A wide space had opened around me, and I was off to the side, like a pariah. The room was utterly silent, and all the kids were staring.
I was humiliated...I knew I'd somehow done something wrong — but what? I was mystified by the boy's behavior. It violated every rule that I'd been taught. If you didn't like something a person was doing, I'd been taught, you asked them nicely to stop. If they didn't, then you would repeat the request more forcefully. If that didn't work, you'd escalate to an adult. Yelling and swearing — that was an absolute last resort. There was something I was missing here.
Now, reading this book, I had my answer. It described a concept called "personal space"...a buffer zone around each person that others were not meant to cross. Doing so would, at minimum, make the person uncomfortable...or provoke hostility. So that was it! I'd violated the boy's personal space and had been too slow in correcting the problem. It didn't take the sting out of the memory, but it gave me comfort to at least understand what had caused the altercation.
What I learned from this book, was the first step in learning to simulate neurotypical body language. If I had not picked up that book, I believe I'd be in a very different place today. Getting a sense of what I didn't know went a long way in correcting the misunderstandings that I encountered so often (like that with my second grade classmate). You have to understand a gap, before you can fill it. All too often, in people like me, this awareness comes late in life.
So much of the dialog around autism and Asperger's is structured around deficits — what I call the "can'ts." Within that framework, it can be too easy to underestimate the capabilities of those on the spectrum. But, there are ways to bridge the gaps. Ways to adapt. We just have to find those ways.
As a society, we can't afford to write off the intelligence and abilities of autistic people. As I learned from my stepmother's friends in the wider disability community, one of the best ways to do this is to ask questions that presume competence. "How" questions — like "How can they communicate?" Or, "How can we teach them social skills?" These are the questions that lead to actionable answers.
When you interact with autistic people, what questions are you asking? "Can" questions or "how" questions?
Gina Gallagher: Mother Doesn't Always Know Best. "I'm ashamed to say "I've underestimated my daughter much of her young life. The gravity of this hit me recently, when my beloved mother passed away. Given Katie's close relationship with my mother, I was sure Katie would be devastated and unable to function. But once again, my daughter surprised me. She's not only managed her own sadness and grief, but also stood by me to help me manage mine...How could I have underestimated this child?"
Autistic Girl Expresses Profound Intelligence "But then one day, three years ago, when Carly was 11, she was working with two of her therapists when she started to feel sick. Unable to communicate what she needed, she ran to a computer and began to type for the first time.
First she typed the word "H-U-R-T" and then "H-E-L-P" and then she threw up. Her therapists were shocked: They had never specifically taught her those words, and they wondered where she had learned them.
Carly's typing showed them that there was a lot more going on inside her head than they had thought. For the first time she was able to communicate independently."
The Hidden Potential of Autistic Kids "Researchers have long considered the majority of those affected by autism to be mentally retarded. Although the numbers cited vary, they generally fall between 70 to 80 percent of the affected population. But when Meredyth Edelson, a researcher at Willamette University, went looking for the source of those statistics, she was surprised that she could not find anything conclusive. Many of the conclusions were based on intelligence tests that tend to overestimate disability in autistic people. "Our knowledge is based on pretty bad data," she says."
Body Language and Personal Space
Personal Space Etiquette
NPR: The Elevator Effect
Lynne Soraya is the nom de plume for a writer with Asperger's Syndrome.