Very early on, I knew something was different about how Ben was developing language. I knew that it wasn’t typical for most of a child’s language to consist of repeating and reciting. I knew that most two year olds make observations, and answer and ask questions, even if not articulately.
He had always been more interested in books than most toys, and when we went to birthday or social events he would always find the bookshelf, sit down with his back to the room and disappear into a book. At a petting zoo we frequented, he ignored the animals, preferring to study an alphabet display that decorated the fence.
Well-intentioned friends – aware of how an entire industry exists to sell products and services by generating parent hysteria – suggested that I not worry. All children develop in their own way. Our pediatrician, whom we rarely see given Ben’s spotless health record, didn’t seem too concerned.
One day I posted a question to a local parent’s network describing Ben and asking for advice or similar situations. I got a lot of responses and most of them suggested that I have him evaluated for autism.
The A Word.
I was dismissive, defensive and hurt. He was affectionate, bonded with people, was happy, silly, playful – not autistic.
I had my first parent-teacher conference at his preschool a few months before he turned three. She was concerned about how he was isolating himself on the playground, how he hurled himself on the floor rather than sit in circle time, and would sometimes throw tantrums to resist instructions. “Maybe he needs some special help,” she suggested.
Beyond that observation, the staff at this Montessori preschool weren’t able to provide many ideas or suggestions for what I should do and sent me home only with a brochure listing resources in our area for children with special needs.
After much research, many phone calls and a long waiting period, we had an assessment with an Early Intervention program within the Oakland Unified School District. At this point, Ben was three and was starting to read, but still could not carry on a conversation.
A speech pathologist and a child psychiatrist came to our house, observed Ben and asked lots of questions. Ben was in no mood. He ignored them, resisted engaging, and to be honest, acted pretty darn autistic.
The speech pathologist furrowed her brow when she watched him and looked puzzled and concerned. As a mom, this is not an expression you want to see on someone’s face when they look at your kid.
She explained to us, very carefully and delicately, that Ben had language, but not social pragmatic language. This meant that he wasn’t using language to engage others or express feelings. She went on describing this as if it had never occurred to us that Ben might have a problem with language, as if she was giving us some very bad news as gently as she could.
I wanted to say, “Duh.”
Instead I told her that we understood; that’s why we’re all here. We're looking for help.
While she and the psychologist worked up a report and a recommendation, they contacted us several more times to ask clarifying questions. Apparently Ben did not really fit in any of the pre-defined categories and they were a bit stymied about the diagnosis and educational placement.
One of these calls was from the psychologist, who asked us, “Have you ever heard of Hyperlexia?” She had been doing her own research and thought this condition might describe Ben. No sooner had we hung up the phone when we Googled the word. We came upon the American Hyperlexia Association web site.
Here’s what it said:
Hyperlexia is defined as:
• A precocious ability to read words, far above what would be expected at their chronological age or an intense fascination with letters or numbers.
• Significant difficulty in understanding verbal language
• Abnormal social skills, difficulty in socializing and interacting appropriately with people
In addition, some children who are Hyperlexic may exhibit the following characteristics:
• Learn expressive language in a peculiar way, echo or memorize the sentence structure without understanding the meaning (echolalia),
• Reverse pronouns
• Rarely initiates conversations
• An intense need to keep routines, difficulty with transitions, ritualistic behavior
• Auditory, olfactory and / or tactile sensitivity
• Self-stimulatory behavior
• Specific, unusual fears
• Normal development until 18-24 months, then regression
• Strong auditory and visual memory
• Difficulty answering "Wh--" questions, such as "what," "where," "who," and "why"
• Think in concrete and literal terms, difficulty with abstract concepts
• Listen selectively, appear to be deaf
With the exception of sensory sensitivity and fears, this described Ben precisely.
There’s a profound feeling of relief when you can put a name on an experience or a phenomenon. It gives you the feeling that someone smarter than you has observed it, described it, thought about it, and might even know what to do.
But most of all, calling Ben hyperlexic helped me strike an emotionally-satisfying semantic bargain: I could talk around The A Word rather than having to use it.
It looks like autism, it’s on the autism spectrum, he has autism-like behaviors. But it’s Hyperlexia, which is different, partly because the term suggests an extraordinary ability rather than a disorder.
So when the assessment report and recommendations came back to us, the checkmark in the autism box didn’t seem quite so scary. Truth be told, I would not have cared if they called Ben a ham sandwich or a potted plant or Alan Greenspan as long as it made him eligible for services (and at no cost to us).
Since then, I’ve started feeling strangely comfortable with the idea that Ben is on the autism spectrum because I’m starting to understand just how vast the spectrum is.
Besides, when I’m in a conversation with a stranger or casual acquaintance, I find that explaining Hyperlexia requires more time than the average person is willing to politely endure before they give you that look that says, “Too much information.”
So I say what I never thought I’d be comfortable saying – that Ben has autism. And semantic bargains aside, I’m finding that it feels just fine.