Friday, October 26, 2007

Discovering Hyperlexia

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.


BetteJo said...

My son is 23 years old and was given the diagnosis of Hyperlexic when he was almost 3. There are autistic characteristics for sure, but it is different. Back then we didn't have the Internet and pretty much had to go by what the specialists told us - and it was a brand new diagnosis then. We got him into a speech and language program, an early childhood special ed program, and had him mainstreamed by kindergarten. Still - social skills has always been the biggest area of concern, and at 23 - he is awkward and people who don't know him would think he is rude in his interactions with them.
I was terrified when he was diagnosed but so much has been learned now. I'm sure you will do fine - truly. Good luck and take care~

Connor's mom said...

Our school psychologist just suggested to me that my six year old son might be Hyperlexic, and I have been an emotional mess all weekend & researching several websites to learn more. It is amazing how well he also fits into these descriptions. I've always known that he was different, and briefly suspected that he might have Asberger's (sp?), or high functioning autism. Our doctor assured me that Connor was gifted and just "sensitive the way bright children can be." To think of him as autistic is horrifying- confirming worst fears. But reading your blog has helped. Connor is ALOT like Ben. Thank you for going to the trouble of writing all this so people like me can feel some comfort.

Anonymous said...

Connor's mom, I can share almost similar experience as yours.
My daughter who is 6 now,has some the hyperlexic qualities .She said her ABC..s by 18months read by 2 1/2 yrs, sang almost 150 nursery rhymes/songs but she never could play and interact well with her peer.Her hands flapping when excited or happy , never trying to initiate or maintain conversation and failure to give eye contact while conversing was bothering us.But her pediatrician never sensed anything abnormal about her.Being a medical graduate I determined to figure out what was wrong.As I researched I realised she best fits into the hyperlexic category.I also realised that back in my childhood I too might have been hyperlexic.
Today my daughter does not flap her hands anymore,and remembers to give eye contact while conversing, and she is doing extremely well as a 1st grader.But making friends is still a problem.I guess she acts a bit awkward and silly while talking.Whenever I see she going steady with a group of friends I cross my fingers.Will wait and see.

Anonymous said...

Dear Minchka

Is your daughter better now? My daughter is 6-1/2 and I have only just realized that this is what she has - Hyperlexia. I had tested her for Autism and was given a NO. But I know she does not socialize or speak any language other than english but reads so fluently since she was 3. She started regressing at 18 mnths as mentioned here. Teachers love her as she is doing all her work as told however, I am dissapointed that she does not give eye contact with other kids and none of them want to be with her as she seems to be rude, which she is definitely NOT. It would be interesting to see how your daughter is doing now. Thank you and lots of well wishes, L

Anonymous said...

My son also has Hyperlexic characteristics as do I. In my mind Hyperlexia and Autism should be seperate. I also think this way about Aspergers. I absolutely hate the Spectrum. This should be totally done away with.
Doctors and teachers want to group all these kids together because they may have a some similiar characteristics, but they all learn differently. It all comes down to funding, and of course lack of research.
I so wish society and doctors would focus more on helping a person with their weaknesses than figuring out what label the next child gets. Working with a child and his strengths also helps with the other abilities he may be lacking.

Rebekah said...

Im obviously a little late to this discusssion, but I Googled hyperlexia and you came up. I can 100% relate to what you posted about learning a "name" for Ben's diagnosis. I have a son with Asperger's syndrome and he was not diagnosed until age 11, and all his life I had no idea what was wrong, just that something wasnt right, but had no idea about ASD's until I read a post like this one on a website describing Asperger's and it was like a light from heaven in one sense and OMG Autism?!?! in another.

Anyways, thats kind of besides the point. I just heard of hyperlexia this morning (thank God for Google and Amazon) because I was looking for Asperger's parenting books and came across a book on hyperlexia that also deals with ASD's and in some of the hyperlexia description I was like "uhm...that's not JJ, thats ME" and I had never even heard of such a term, but apparently when I started reading at around 2 (in 1979) there was no such thing as hyperlexia, so no one would have known anything...and when I started learning about Asperger's because of JJ, I thought "hmm...I do some of this, and so does my dad, do I have Asperger's too?" and just wondered but in my thirties with preteens, it doesnt make much difference anymore what they call it or what they can do for it other than where I can learn how to better communicate with people, and to make me feel more "ok" rather than a total oddball, because at least there are some other people out there like this too.

Im just glad you were able to get a diagnosis for Ben at an early age and that there are programs out there now for him so that he doesnt have to struggle in life hopefully as much as someone like me did. Just love him and never make him feel like he is less than anyone else because of his differences and when he does things that are embarrassing or strange, dont make a big deal out of it, that is the one thing that I didnt have from my mom that I wish I did (not trying to give you parenting advice, just kind of saying what to watch out for with your reactions to him...Im sure you are a wonderful parent or you wouldnt have gone to this much trouble to find help for him)

Anyways, good luck to you and Ben and thank you for posting this so its just one more person to add to the list of "Im not the only one"


Steve said...

We've been frustrated with our son who exhibits many of the same behaviors as all of the children in the original post and these responses. We just thought he was super bright when it came to reading (and his bike, hopped on barely 4 and pedaled away) We followed a link to Hyperlexia tonight and it is all that we've been reading about for the last 2-3 hours. We'll be poring over this blog in the next few weeks.

Christa said...

Hi Steve. I hope the blog will be useful as you look for ways to support your son. There's a new books that just came out called The Anti-Romantic Child, which is a memoir by a mother who is a Literature professor and has a hyperlexic son. I recommend it as another useful resource.

You're not alone! Feel free to reach out to me and other people you find writing online. Kitaiska Sandwich is another great blog by a mom with a hyperlexic son.


Vijaya said...

Its really such a relief to read from moms who have experienced these kind of things with their children. I know my son is different but don't know how and why? I always try to reach out for any resources that gives me more knowledge about his ' type'....I don't know what to call for it also as those names are my worst fears and nightmares. But whatever people are talking here makes more sense to me which means i am closer to finding some help for me and my son too...
Thanks a lot Christa for this blog and i like to be a part of it.

Disturbed mom

Lauren White said...

I am so glad you are writing about you and your son. I am a teacher and have been teaching a son who is Hyperlexic this year. From a teacher's point of view, I have learned so much and am loving every moment of it. Mom's I know you are all having a hard time with "labeling" your child. Just know that labels aren't everything. If you are in the right schools, it will only help your child. I promise. The child that I am working with who is Hyperlexic, I have been using it to my advantage, and it has made learning so much more fun for the both of us. I wish all of you the best. Keep up the good work!


Anonymous said...

Pragmatic language impairment

Unknown said...

My son CAEDEN IRIZARRY from lehigh acres florida.... had sort of a rough start with life he had been through so many times because of acid reflux and asthma. basically the first year of his life he spent in the hospital.. he has been seeing the same pediatrician since birth at lee physicians group pediatrics... he failed the mchat at age 2.... and the doctor started going into detail about kmy sons condition because we just thought maybe it was because he's been so sick that he was delayed ain talking and walking.. but he always enjoyed watching the television by himself and he was always so quick to learn words and paraphrase things... so when the doctor approached us with autism we didn't know how to take it and my family was like no no no no no he makes eye contact he's too happy of a baby he's too intelligent he's like a baby Einstein... okay this is what he does he jumps up and down watching TV he can read words he can write he didn't start talking full sentences until he was 3 now he talks sentences and he will answer the what questions and who question but I think it's because it's repetitive questions he's learned repetitive answers... a family member of mine told me oh you just want him to be disabled and that's not the case at all no parent wants their child to be disabled but I feel with the proper treatment that he can excel way far above average on a continuous basis... the doctor thinks he has (**asd***) but when I was reading I saw this hyper Lexia and I so think he fits almost everything and that other than the fact his speech is it getting worse it's starting to get better

Anonymous said...

Can anyone tell me at what age (or range) their child started speaking fluently? My 5-year old has hyperlexia with the accompanying language delays.