Apraxia and Hyperlexia: A Tale of Two Boys

Non-Verbal Communication

Dyslexia“Well, he doesn’t look autistic to me.”  That’s a line I’ve often heard through the years, usually from other parents of children with autism.  My son has been evaluated, diagnosed and re-diagnosed many times, always with the same result: Autism Spectrum Disorder.

Two Boys On The Spectrum
Even in the autism community, many do not understand that autism is a spectrum and that each case is different.  There are so many possible symptoms of autism that opposite symptoms, such as extreme stranger anxiety and over-friendliness with strangers, may indicate autism.

To illustrate this point, I like to tell the story of my son Louie and his preschool buddy Kevin, who both had autistic symptoms from birth and were identified as having “behavior consistent with Autism Spectrum Disorder” at the age of 18 months.  The boys had different histories and responded to different treatments.  No one used the word “high-functioning” to describe them when they were little, but both are now successfully mainstreamed in general education classes with aides.

Kevin
Kevin was the perfect baby.  He breastfed and slept well.  He didn’t cry.  His mother returned to work after her maternity leave, and her baby made an easy transition to day care.  His proud grandfather wrote a poem about Kevin’s peaceful, meditative state.  He became the embodiment of joy and harmony in his family.

As he approached his first birthday, everyone anxiously waited to hear him speak, but he didn’t speak.  He was passive.  His parents and grandparents came to the realization that Kevin wasn’t actually interacting with them, he was tolerating them.  When Kevin was 18 months old, a visit to a developmental pediatrician confirmed that Kevin had  apraxia of speech and was probably on the autism spectrum.

What is Apraxia?
Childhood Apraxia of Speech (CAS) is a disorder that affects oral-motor planning.  A child with this disorder has difficulty coordinating facial, mouth and neck muscles to form speech, and may also have difficulty with fine motor skills such as writing.  Non-speech movements such as eating are usually not affected by this disorder.  According to the Cincinnati Children’s Hospital, although there may be no problem with the muscles in and around the mouth, communication from the brain to the muscles is incomplete.  Therefore, it is a neurological disorder.

Kevin’s parents researched therapy options and concluded that a home-based program in Applied Behavioral Analysis (ABA) and Applied Verbal Behavior (AVB) would be the best way to get Kevin interacting with another person.  It was a huge undertaking for parents who had no background in this field, but they created a calm, fruitful learning environment for their son.  They also enrolled Kevin in a public preschool program for students with autism which provided one hour of individualized therapy and 2.5 hours of group therapy and activities four times per week.  Kevin began to communicate gradually at first, but his pace of learning increased with each week.

Louie
My son Louie was an angel from the moment he was born… if you believe that real angels don’t eat or sleep and are always on a mission.  Breastfeeding was not possible for him, and bottle-feeding was difficult.  He was wide awake for most of the day and night, either very happy or screaming in terror – there wasn’t much in between those two extremes.  He was highly sensitive to sound and light, and he suffered separation anxiety from birth, stranger anxiety starting at 11 weeks and social anxiety by the time he was 6 months old.

If you can imagine what a hyperactive newborn looks like, then you can imagine my Louie.  His waking hours were filled with repetition and self-stimulation.  By the time he was 2 months old, he gestured to be held upright in my lap so that he could practice standing, stretching and lunging.  He was walking at 8 months, running at 9 months and doing full body pull-ups on the windowsill at 10 months.

I lost 60 pounds (all of the pregnancy weight plus some extra) in his first year, and I couldn’t return to work or finish my Ph.D. program because of Louie’s need for constant attention and care.  When Louie was a year old he started teaching himself to read.  He had a good vocabulary, because he memorized phrases from his favorite books.  He even taught himself phonics so that he could read new words correctly.  One time we were in a store and I had him sitting in the cart.  He tried to jump out of the cart, shouting, “Garlic!”  I caught him and turned to see what he was reaching for – there was a store display of a new brand of garlic crackers that I had never seen before.  I don’t think he knew what garlic was, but he wanted it!

My husband and I knew very well that this was not typical behavior for a baby, but we were repeatedly assured that we were just having a hard time adjusting to parenthood.  We were surprised when over the course of a few days, first a developmental psychologist, then his pediatrician finally suggested the possibility of autism in our verbal, literate, turbo-charged toddler.

What Is Hyperlexia?
Hyperlexia is the spontaneous ability to read at an early age, often – but not always – associated with autism.  Children with hyperlexia are fascinated by letters or numbers, and their ability to “decode” words or phrases or even math equations is far greater than their ability to comprehend what they read.

Susan Martins Miller in her book Reading Too Soon writes, “Children with characteristics of hyperlexia tend to have strong memories for what they see and hear…His strong memory lets him store and retrieve chunks or phrases-or even whole conversations.  The system breaks down when these chunks must be dissected and rearranged to form original thoughts.  This is a challenge for hyperlexic kids.”

Childhood hyperlexia is usually accompanied by delayed social or conversational skills, repetitive behavior, severe anxiety and unusual phobias.  Paradoxically, children with hyperlexia often have impaired language ability, including those like Louie who are perfectly capable of producing speech.

Because of Louie’s severe anxiety and phobias, he was unable to work with a therapist until he was 3 years old.  We decided against behavior-based therapies for several reasons.  First, behavior-based therapy does not address the cause for anxiety, which was his predominant obstacle.  Second, he needed to learn flexibility and adaptibility – he had already mastered many of the scripts and skills taught in behavior-based therapy.  Third, he needed community-based activities to develop social skills, social language and emotional regulation .

Play therapy answered all of these needs.  When Louie’s anxiety was reduced to a manageable level, we were able to transition him into the same public preschool program where Kevin was enrolled.

Holding HandsHelping Each Other
Louie and Kevin quickly became friends at preschool, which surprised both me and Kevin’s mother.  Louie liked Kevin because he was relatively quiet and helped Louie feel calm.  Kevin liked to watch what Louie was doing, because Louie was always doing something interesting.

In many ways their personalities and abilities complemented each other, even though they shared the same primary medical diagnosis.  Louie was able to learn classroom behavior and work habits from his friend.  Kevin learned new ways to express himself.  They seemed to understand each other intuitively: when Louie was feeling anxious about being separated from me at school, I saw him reach out for Kevin’s hand, and away they went down the hall to gym class.

They didn’t look autistic to me.

Karen

Written on 2012/01/26 by:

Karen

Karen Wang is a Friendship Circle parent. You may have seen her sneaking into the volunteer lounge for ice cream or being pushed into the cheese pit by laughing children. She is a contributing author to the anthology "My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids With Disabilities"
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  • Shannon

    Thank you for this. Beautiful written. I am sharing with some friends. I have two sons of my own. One is apraxic and one is hyperlexic so I can relate. They are both on the autism spectrum.