The road to Hannah’s mind opened a few days before her 13th birthday.
Her parents, therapists, nutritionists and teachers had spent years preparing the way. They had moved mountains to improve her sense of balance, her sensory perception and her overall health. They sent in truckloads of occupational and physical therapy and emotional support. But it wasn’t until the fall of 2005 that traffic finally began to flow in the other direction. Hannah, whose speech was limited to snatches of songs, echoed dialogue and unintelligible utterances, is profoundly autistic, and doctors thought she was most likely retarded. But on that October day, after she was introduced to the use of a specialized computer keyboard, Hannah proved them wrong. “Is there anything you’d like to say, Hannah” asked Marilyn Chadwick, director of training at the Facilitated Communication Institute at Syracuse University. With Chadwick helping to stabilize her right wrist and her mother watching, a girl thought to be incapable of learning to read or write slowly typed, “I love Mom.” A year and a half later, Hannah sits with her tutor at a small computer desk in her suburban home outside New York City. Facilitated communication is controversial , but it has clearly turned Hannah’s life around. Since her breakthrough, she no longer spends much of her day watching Sesame Street and Blue’s Clues. Instead, she is working her way through high school biology, algebra and ancient history. “It became obvious fairly quickly that she already knew a lot besides how to read,” says her tutor, Tonette Jacob. During the silent years, it seems, Hannah was soaking up vast storehouses of information. The girl without language had an extensive vocabulary, a sense of humor and some unusual gifts. One day, when Jacob presented her with a page of 30 or so math problems, Hannah took one look, then typed all 30 answers. Stunned, Jacob asked, “Do you have a photographic memory” Hannah typed “Yes.” Like many people with autism, Hannah is so acutely sensitive to sound that she’ll catch every word of a conversation occurring elsewhere in the house, which may account for much of her knowledge. She is also hypersensitive to visual input. Gazing directly at things is difficult, so she often relies on her almost preternatural peripheral vision. Hannah’s newfound ability to communicate has enabled her intellect to flower, but it also has a dark side: she has become painfully aware of her own autism. Of this, she writes, “Reality hurts.” More than 60 years after autism was first described by American psychiatrist Leo Kanner, there are still more questions than answers about this complex disorder. Its causes are still uncertain, as are the reasons for the rapidly rising incidence of autism in the U.S., Japan, England, Denmark and France. But slowly, steadily, many myths about autism are falling away, as scientists get a better picture of what’s going on in the bodies and brains of people with autism and as more of those who are profoundly affected, like Hannah, are able to give voice to their experience. Among the surprises: • Autism is almost certainly, like cancer, many diseases with many distinct causes. It’s well known that there’s a wide range in the severity of symptoms — from profound disability to milder forms like Asperger syndrome, in which intellectual ability is generally high but social awareness is low. Indeed, doctors now prefer the term Autistic Spectrum Disorders . But scientists suspect there are also distinct subtypes, including an early-onset type and a regressive type that can strike as late as age 2. • Once thought to be mainly a disease of the cerebellum — a region in the back of the brain that integrates sensory and motor activity, autism is increasingly seen as a pervasive problem with the way the brain is wired. The distribution of white matter, the nerve fibers that link diverse parts of the brain, is abnormal, but it’s not clear how much is the cause and how much the result of autism. Read “New Clues to Autism’s Cause.”
See six tips for traveling with an autistic child.
