Hyperlexia-Lite

I thought it would be helpful to post info about hyperlexia, which means reading real real early, and what it means for Luca (and all of us who love him.) I hope I don't take anyone off guard. And for the record, I'd call him hyperlexic-lite as most who know him and evaluate him dismiss any issues; and since he doesn't have the typical autistic-like symptoms. But Frank and I and his therapists who've known him for 2 years still know better. I can't seem to make this article an active link... if anyone can help, I'll repost a MUCH shorter version. And when our Luca blog is up, we'll post such info there. xoxo

WHAT IS HYPERLEXIA?
"The long-term prognosis for children with hyperlexia is very good. "
By Julie Whaley

Gordon's favorite activity as a young child was spinning. He liked to spin things, and he liked to spin himself. We never went anywhere without a tote bag full of baby food jar lids. If he could spin the lids, he could happily occupy himself pretty well anywhere, as long as it wasn't too noisy.

He seemed intelligent. By the age of eighteen months, he had mastered any toy that required him to fit shapes into matching spaces, and he could identify every letter of the alphabet, upper and lower case. Gordon loved books, and we spent a lot of time sharing them together. I don't know why this caught my attention, but I noticed that when I would read to him, he seemed to be looking at the words and not the pictures.

As a two-year-old, he could say what seemed like an appropriate number of words for his age, but he was not beginning to put words together in any functional way. Even by the time he started preschool at age four, he could not answer a yes or no question, or tell you his name if you asked him. He really wouldn't answer any direct question. It seemed like he knew a lot of things. We just couldn't get him to talk.

I'll never forget a time when he was about four and a half, and we were on a hotel elevator, and a man stepped in after us and said hello to Gordon. He was already in speech therapy at this time, and he had learned that if someone says, "Hi, Gordon, how are you?" he should respond with, "I'm fine, thanks, how are you." We practiced the phrase. It was an easy one to work on, because it was very predictable; the same words every time. Yet Gordon thought it was equally appropriate to greet someone by barking like a dog. I held my breath as I waited to see how he would respond to this man in the elevator. Luckily, he chose to use words.

At his fifth birthday party, while he absolutely resisted being the center of attention (even to open his presents, which should have been a happy thing), he astounded everyone by reading aloud each birthday card as he pulled them off his packages. He could read anything you put in front of him. Still, he couldn't use words to express his own ideas. He sometimes echoed phrases he had heard in his favorite videos. Sometimes he even used those phrases somewhat appropriately, saying an angry line when he was angry. But his own words didn't come easily. Even to make a simple request, he progressed from saying only, "Juice!" to "Juice, please" (as we worked on manners) to "Want something to drink juice please."

DEVELOPMENTAL CUES
Gordon has hyperlexia. The more I learn about hyperlexia, the more I realize that his language acquisition was typical of children with hyperlexia, as were his interests and strengths. He was (and still is) very good at recognizing patterns; he's a visual learner. He liked routines. He loved "Wheel of Fortune" for its letters and spinning wheel and predictability. When he did start talking, he consistently mixed up pronouns. He still takes things very literally. Most children learn how to talk on their own, simply by being surrounded by spoken language. Then, after they've been talking for a while, someone very deliberately teaches them how to read. Children with hyperlexia are just the opposite. They learn how to read simply by being surrounded by printed words. We don't really know how. Then, after they've been reading for a while, someone has to very deliberately work with them on how to communicate verbally.

Children with hyperlexia have a constellation of symptoms that includes precocious reading skills--far above what would be expected at their chronological ages--accompanied by significant problems in language learning or social skills, or both. Many of these children, such as Gordon, are considered to have developmental disabilities. Gordon had difficulty with auditory processing and sensory integration, was overly sensitive to sound and touch, and struggled with fine motor skills. Children with hyperlexia may be diagnosed as having autism, Asperger's Syndrome or PDD NOS; behavior disorder; language disorder; learning disabled or gifted.

PRECOCIOUS READING ABILITY
Perhaps the most important symptom of hyperlexia is the precocious ability to decode printed words. This skill is not taught by parents. Usually when the child is between eighteen months and two years of age, parents are amazed by the child's ability to name letters and numbers. By three years, the children see printed words and read them, sometimes before they have really learned to talk. Some read sight words while others are able to phonetically decode any word at a very young age. For too long, the precocious reading ability has been dismissed as rote learning, a splinter skill or a savant idiosyncrasy. Because comprehension lags behind the ability to sight-read and decode words, the reading is frequently disregarded as unimportant. But it is vitally important! Once hyperlexia is identified in children with developmental disabilities, their reading ability can be used to help develop weak areas.

LANGUAGE & LEARNING DISORDERS [This is very Luca.]
Another important symptom is the language learning disorder evidenced by these children. Of those children who talk (some children with hyperlexia are nonverbal), many show this language pattern:
· √ Early speech and language attempts are echolalic (both immediate and delayed)
· √ Good auditory memory for rotely learned songs, the alphabet and numbers, as well as good visual memory
· √ Comprehension of single words (mainly nouns) is better than comprehension of sentences
· √ Learning language in chunks and transferring whole phrases into appropriate places (Gestalt processing)
· √ Marked abnormalities in form or content of speech, including stereotyped and repetitive speech, pronominal reversals, and idiosyncratic use of words or phrases
· √ Marked impairment in the ability to initiate or sustain a conversation, despite adequate speech.


SOCIAL & INTERPERSONAL DEVELOPMENT [This isn't so much Luca, though noises, large groups and ignoring peers at times are or were Luca things]
Another constellation of symptoms, some of which may be related to deficits in language comprehension, also are frequent in this group of children. These are associated with social relatedness, pragmatic and behavioral issues, and may be associated with nonverbal learning disability:
· Non-compliant behaviors
· Ritualistic behaviors
· Self-stimulatory behaviors (such as hand-flapping or spinning)
· Extreme need for sameness
· Difficulty with transitions
· √ Sensory sensitivities [a little]
· Tantrum behaviors
· General anxiety/specific unusual fears
· √ Difficulty in groups [overwhelmed since infancy]
· √ Difficulty in socializing with peers [just not always interested]
· √ Sensitivity to loud machine noises [not anymore]
· Impaired ability to make peer friendships.

As language comprehension and expression get better, behavioral symptoms often subside. Indeed, some children with hyperlexia who look quite autistic when they are two to three years old show less severe symptoms when their language skills improve. As their caregivers and teachers learn strategies to make them understand what is wanted or expected, these children become less anxious, more compliant and more related.

HOW DO WE INTERVENE?
The first intervention many children with hyperlexia receive is speech and language therapy. This should be the core around which all other interventions are wrapped. It's almost like children with hyperlexia learn their first language in the same way that adults learn a second language. A sound educational program using the child's strengths and interests to help with areas of weakness is vital to success. Teachers who are open-minded, willing to adapt classroom curriculum, and creatively solve problems are best suited to deal with the unique challenge of teaching a child with hyperlexia. When Gordon was in preschool, he was terrified of "Mr. Mouth," a game that involves a battery-operated frog head that rotates slowly, lifts up and snaps shut. His teachers were determined to help him overcome this fear and enjoy the game with his classmates. Knowing that Gordon liked "Wheel of Fortune," they removed the top of Mr. Mouth's head and attached a hand-made cardboard wheel with numbered spaces. They were successful in getting Gordon to flick the game's plastic flies at the rotating wheel. After he was comfortable with that, they were able to replace the noisier snapping head with wiggly eyes, and engage Gordon in flicking flies into its mouth alongside the other children.

Social skills training should be incorporated into speech and language therapy and part of the educational program. Unstructured settings such as recess are usually problematic for children with hyperlexia. Role-playing, writing scripts and rules of conversation are just some ways we can use their strengths to develop social skills. Sensory integration therapy can help the sensory processing deficit most children with hyperlexia have. Sensory integration therapy is available through specially trained occupational therapists who administer a test to identify problems with the tactile, vestibular or propreceptive systems or with motor planning. Many schools do not have the facilities or equipment to fully implement sensory integration therapy (such as suspended equipment), but some interventions can and should be incorporated into each school day. Sensory inputs that are organizing and calming for the child, such as propreceptive (lifting heavy books or push-ups against a wall), are important for the child to deal with transitions and other stresses. I have heard of children who had specific break times during the school day to walk around a bit, swing on a swing, jump on a mini-trampoline, or some other calming activity. Gordon has permission to carry an "emergency" piece of gum, to chew on when things become stressful for him.

The long-term prognosis for children with hyperlexia is very good. The early reading of these children provides a tool to communicate with them and teach them other skills, including language. Identifying them as having hyperlexia allows us to understand their learning style and develop appropriate remediation strategies. Children like Gordon, who obtained early intervention that used their reading strengths and incorporated social skills, are successfully mainstreamed in grade school with little or no special education services. Early identification and intervention clearly is instrumental in their success.

Parents and teachers who meet Gordon now, at age ten, can hardly believe it when I describe what he was like as a toddler. I do not think he is or ever will be "cured." While he has made great progress, he is still different. He still has hyperlexia. But that is not necessarily a bad thing. With his unique way of perceiving the world, he often floors me with the observations he makes. While many of his peers shy away from him because he sometimes appears odd, I recently overheard a comment from one of his kinder female classmates who said, "I really like Gordon. He's so different." That he is. And it makes me proud.