When Babies Read

A Practical Guide to Helping Young Children with Hyperlexia, Asperger Syndrome and High-Functioning Autism

Audra Jensen

• Publisher: Jessica Kingsley Publishers
• Year: 2005
• Print ISBN: 9781843108030
• eBook ISBN: 9781846422492
• Topic: Education
• Subtopic: Inclusive Education

Audra Jensen' son began reading when he was only two years old. She shares her experiences - both the challenges and joys - of raising a child with autism and hyperlexia - an early and obsessive interest in the written word associated with social deficits and significant difficulty in understanding verbal language.

The author stresses the importance of diagnosis of the condition for successful implementation of effective teaching strategies and encouragement of more typical childhood development. As well as useful advice, this guide provides a comprehensive reading curriculum specially designed for young, challenged children to help promote their reading ability.

With practical suggestions on how to modify teaching and therapy programmes to suit a child's individual learning style, this practical guide will prove invaluable for parents of children with autism and hyperlexia.

Chapter 1

Something about Him

“There’s just something about him.” It’s a phrase I became accustomed to hearing from the time he was small. And there truly is—just something about him.

He would sit and look at books for hours. He would turn the pages so gently. He would look at the words on the page more than the pictures. He was only a year old. He could identify many letters of the alphabet. He didn’t smile or laugh much—only when he was rough-housing or playing with his letters. He appeared almost deaf—not responding to his name.

Then he was 18 months old. He could line up the alphabet from beginning to end. He could identify all the letters on sight. He could sing the alphabet song—backwards, no less. Numbers began to matter to him. He could count a large number of objects. He didn’t seem interested in other children. There was no child-like anxiety of strangers. He began to have violent tantrums for no obvious reason.

At two, he spontaneously began to read. He was obsessed with it. He wanted to line up plastic letters all day long. He had never called me Mommy or used any other word consistently. His days continued to be flooded with tantrums and rituals. People were furniture. Indulging his obsessions of letters and numbers was often the only thing that made him happy. That, and reading. More and more reading.

It was a few months after his second birthday that we sought expert help. He was given a diagnosis of autism and hyperlexia. I knew from that first day that we would fight it in the same way we would if he were diagnosed with leukemia. We would fight and work and battle the “cancer” in his brain. We could see that the autism was taking over. It was eating up all the normal, happy elements of his personality. The more time went on, the more he fixated on his obsessions and the less he interacted with people. He needed to regain a developmental balance. Yes, we had to fight this.

By the time he was two-and-a-half, we had a full program running for him. Half the day was spent in an early childhood special education program. The other half of the day he had speech therapy or occupational therapy or home tutoring. He worked from the time he woke up until the time he went to bed.

The first few months were hard. He was a fighter. He spent most of his time screaming and resisting any intervention. We persisted. For good behavior or compliance, he was awarded with a letter sticker or stamp. We sang the alphabet song. We wrestled around. We expected a lot out of him, and he began to respond.

As he began to settle down and make progress, we began to use these unusual skills that he possessed more and more to teach him additional skills. He was still not using any language to communicate anything, so that was our first goal.

Isaak was attached to his sippy cup. He would regularly go to the kitchen and whine. I had unsuccessfully tried to get him to say the word drink and had even tried to get him to simply point to the fridge. He didn’t understand any of that. I usually just gave him a drink and patted him on the head.

Isaak could read the word drink and I knew it was the one thing which he desired above all else. One day, I waited for that familiar whine. I was in the kitchen, at the refrigerator, index card in hand that said drink.

“You want a drink? Drink. Say drink.” Whine, cry. “Say drink.” I handed him the card. More crying. He looked at the card.

“Drink,” he read, and then he started crying again. I saw no light bulb. I immediately handed him the drink. Then, it clicked. He didn’t say anything, of course, but I could see it in his face and in his demeanor. I can only imagine him thinking, “The words actually mean something.” This was more than labeling. This was communicating.

I made a set of index cards with common words he would need throughout the day. Words like sit down, stand up, sing, read, night-night, bye-bye, and eat were in the set. I laminated them and put them together on a metal ring. I called it the Read-and-Comply game. When playgroup was going to song time, I’d have him flip to the sing card and then prompt him to go to the song circle. Sit down would be next, and I would have him read it and then sit down. Snack time would elicit the eat card and bedtime, night-night. It wasn’t a difficult concept, but for a two-year-old with no communication skills, only reading abilities, it was a rather peculiar thing to be teaching. Isaak learned his first communication words through that little card book. That would take us into a whole new, unconventional way to teach him language.

Soon it was time to teach him to use simple sentences. I had an index card that said “I want” on it. When he started whining for something, I’d hand him that card and he’d read, “I want” and then finish it with “banana” or “drink” or “book.” He was making his first sentences. I’d show him a picture of someone doing an action and I’d hand him the prompt, “______ is _______” and he’d fill in “Boy is swinging.” He was using sentences for the first time in his three years.

After I started working with him, I began to see that I could have expectations of him. In fact, the more I expected, the faster he progressed. He was still protesting much of the time in therapy, but he was also making rapid progress when he worked.

Isaak continued to make great gains, but he had so much catching up to do that, at times, it seemed like it would never be over. Even though he was now using language, he was only chunking (using phrases taught to him in chunks) and not generating his own language. We began to teach him sentence structure for that—what parts of speech are and how they work together to form different sentences. We basically gave him grammar lessons generally taught in late grade school. Sometime around his fourth birthday, he began to generate his own language. It took another year or two of hard work to begin sounding like his typical peers, but it did happen. By seven, his language work was mainly pragmatic, teaching him to understand the subtle intricacies of language; but to the untrained ear, he sounded normal.

A similar progression happened with his other struggling areas of development like social skills and behavior. Skills needed to be broken down into small bits and taught to him with visual aids and rewards. After some time, the skills became a natural part of him. His ability to learn was just remarkable.

As of this writing, Isaak is almost eight years old. He has had a wonderful year in school. He is in a gifted multi-age class requiring minimal support. Mathematically, he can out-think most secondary students. Most people cannot pick him out of a crowd. His language can be a little pedantic and stilted at times. His social skills have blossomed beautifully, but he may seem aloof at times. His behavior has improved dramatically, even though he still shows the occasional frustration. We still work with him every day, teaching him to master advanced language and social skills, but we have high hopes for him. He will always have autism, but he is being taught the tools needed to function completely independently in society. Only those closest to him will need to know his struggles.

The term hyperlexia was coined in 1967 (Silberberg and Silberberg 1967) to describe children with unusually advanced reading skills that stood in contrast to language and social difficulties. Even though this term has existed for nearly 40 years, few parents and fewer professionals are aware of it. Parents of these children find themselves wandering aimlessly trying to find an explanation to their children’s paradoxical personality. Most of these children have a pervasive developmental disorder (such as autism or Asperger Syndrome), but because their children appear so bright (as evidenced in early reading abilities), parents and professionals are confused, and the children often do not get the help they require in a timely manner.

Hyperlexia almost always coexists with an autism spectrum disorder, but it can often mask the autism because the child is so intelligent. How could the child have autism if he can read so young? I have heard parents say, “He doesn’t talk, but he knows his letters and numbers” as if reciting the alphabet counts as a form of communication. It is confusing.

There are also a number of children who have been diagnosed with autism who may be showing early signs of being able to read. However, with so much effort on overcoming the autism symptoms, they miss a window of opportunity to teach them to read and thus be able to have that skill in their arsenal.

For young children, learning to read is not only an important skill in society, it is vital. This skill is invaluable for children struggling to learn the simplest facets of language and social expectations. Their ability to read opens up a world of opportunity.

Additionally, being equipped to modify a particular child’s program to his specific interests and needs is essential. It’s like a puzzle. Each child has his own picture, with unique pieces that fit together until the picture is complete. What a remarkable journey!

Chapter 2

The Walking Paradox

As a parent of a child with hyperlexia, I realized early on that my son was a walking paradox. In public, strangers often were in awe of his abilities. “How old is he? How did he learn to read so young? Did he do that math himself? How did he learn all that geography?” Even as they were astonished, I would think to myself, “That may be remarkable, but I can’t carry on a conversation with him, he has no concept of friendship, and he has so many odd behaviors.” At other times, when he was acting out or when his behavior was obviously different from other kids, I wanted to prod him to perform—to show off his remarkable skills—perhaps in the hope that it would hide his deficits.

Raising a child with hyperlexia is a constant struggle. You might think life would be easier if your child were simply gifted, or solely autistic, or merely learning disabled. At least then there might be a place in society where he could more easily conform. Instead, he might have a touch of giftedness, a dash of autism, and a hint of spiritedness; and he fits comfortably nowhere. You will probably have to forge a new trail. You will have to educate yourself so that you can educate those around you. All children are truly unique—there is no doubt about that—but your child with hyperlexia may be uncommonly unique.

Definitions

Hyperlexia

Hyperlexia is a complex disorder that, in most cases, coexists with another condition—a pervasive developmental disorder (such as autism or Asperger Syndrome) or a learning or language disability that is readily apparent. Hyperlexia’s trademark is an early and intense fascination with the written word. It is not merely early reading, however. A child may read unusually early, have some social oddities, and yet it may only mean that he is a bright, precocious child. Some children do prefer books to social contact, and that is not necessarily an indication of a disorder. Some children receive an autism spectrum diagnosis, and, although accurate, it does not offer enough information and direction to meet the child’s unique needs. Some children never receive a diagnosis or direction, and parents are left to try to figure things out on their own.

The American Hyperlexia Association (AHA) has an extensive collection of information on the disorder. From their literature (AHA 2003) comes the following information.

Hyperlexia is a syndrome observed in children who have the following characteristics:

•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 with hyperlexia 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 initiate conversations

•have 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.

Dr. Darold A. Treffert, M.D. is an expert on savant and related syndromes. He defines hyperlexia as, “[A] combination of precocious reading skills accompanied by significant problems with learning and language, and impaired social skills” (Treffert 2002).

A research article published by the Journal of Child Psychology and Psychiatry and Alli...

Table of contents

• Cover
• Half Title
• Of Related Interest
• Title Page
• Copyright
• Contents
• Foreword by Peter S.Jensen MD
• Preface
• Acknowledgements
• 1 Something about Him
• 2 The Walking Paradox
• 3 The Case for Teaching Reading
• 4 Teaching Babies to Read
• 5 Line of Attack
• 6 Learning Early Social Expectations
• 7 Navigating the School System
• 8 Customizing Behavior Therapy
• 9 Customizing Language Therapy
• 10 Theory of Mind
• 11 Ten Commandments
• Appendix A: Special Education Law in the United States
• Appendix B: Some Useful Organizations in the UK
• Appendix C: Glossary and Diagnostic Criteria
• References
• Subject Index
• Author Index