Watching Daniel Bloom

Getting punched in the stomach – Hyperlexia Syndrome

Posted on: April 12, 2011

I don’t know why, but today, I just couldn’t shake the worries about Daniel. It’s like I’ve just mentally come to terms with the fact that we’re probably not dealing with epilepsy (which is a huge relief)…but as I start to put that diagnosis to rest I’m suddenly faced with a new dilemna. If he’s not struggling with developmental delays associated with epilepsy, then what is it?

The truth is, no matter how much hope I continue to have, and no matter how positive I am about things, I simply cannot shake the fact that deep down, I know there’s something different in the way Daniel deals with the world. Something more than just a later bloomer, something that isn’t going to magically disappear. And it’s up to me to advocate for him, turn every page and research every possibility to make sure that if he needs help, that he’s getting it.

So, today I did what I always do in moments like this – I started researching. Recently, I’ve come to terms with the fact that I know D could be diagnosed PDD-NOS (pervasive developmental disorder – not otherwise specified). This is basically a catch-all term for kids that have some autism-spectrum characteristics but not in exact manner required by the DSM to diagnose autism “as such”.  A lot of people think of it as “mild autism”, but that’s not actually acurate.

Anyway, Daniel simply has enough characteristics that I know you could come to that conclusion. Andrew doesn’t like me to say it, and I don’t really like thinking about it, but I know in my heart that it’s true.

Beyond the nagging PDD-NOS thoughts, it’s started to bother me recently how obsessed – and I really do mean obsessed – Daniel is with letters and numbers.  Every book we read is about the alphabet or numbers, and he has absolutely no interest in the pictures. But the letters? Oh those letters make him light up like the fourth of July. It’s actually been a positive sign for me- he learned all the letters of the alphabet and the sounds they make when he was just 2 1/2, well ahead of most of his peers. Uppercase, lowercase, it didn’t matter, and it didn’t matter what order they were in either. He just loves letters and the sounds they make. And I took that as a good sign that cognitively, he was developing in ways we simply didn’t know because of the language barriers.

More recently, he’s even started to seem to understand basic words – like C-A-T is cat. And he’s taken on a new love of numbers and counting.  Again, positive things, but I’ve started to feel like there’s something “not right” about his intense interest in letters and numbers. So, I googled “Autism + early reading” just to see if there was any kind of correlation. What I found made me feel like I’d been punched in the gut.

Hyperlexia is a syndrome that faces a lot of debate – I’ve read that some people say that people with this diagnosis fall at the top of the continuum of what would be considered high-functioning autism. I’ve also seen it described as separate subgroup of children with Pervasive Developmental Disorder. Finally, I’ve seen people argue that it should be treated as a distinct disorder. But however you want to “categorize” it, the characteristics describe Daniel. Here’s the basic description:

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. – CHECK
  • Significant difficulty in understanding verbal language – CHECK
  • Abnormal social skills, difficulty in socializing and interacting appropriately with people – CHECK

In addition, some children who are hyperlexic may exhibit the following characteristics:

  • Learn expressive language in a peculiar way, echo ro memorize the sentence structure without understanding the meaning (echolalia), reverse pronouns  – CHECK
  • Rarely initiates conversations –too early to really know – he “labels things” a lot but never starts a “conversation”
  • An intense need to keep routines, difficulty with transitions, ritualistic behavior – Oh Boy, CHECK
  • Auditory, olfactory and / or tactile sensitivity – CHECK – Realizing the fact that he doesn’t like his head touched, or really anything touched unless he initiates it…probably fits in the tactile sensitivity category
  • Self-stimulatory behavior – No
  • Specific, unusual fears – No (I think animals moving is a normal fear)
  • Normal development until 18-24 months, then a period of regression, followed by progression again – I feel this is a CHECK (at the time, we wrote it off as a “plateau” where we saw no progression for 6-8 months
  • strong auditory and visual memory – CHECK
  • Difficulty answering “Wh–” questions, such as “what,” “where,” “who,” and “why” – too early to really know but he can answer “who is that” to a photo of family members
  • Think in concrete and literal terms, difficulty with abstract concepts – too early to know
  • Listen selectively, appear to be deaf – CHECK

So, I made some calls and I now have a new focus. Maybe, just maybe, I’m wrong about this. But I really don’t think so.

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3 Responses to "Getting punched in the stomach – Hyperlexia Syndrome"

HI,
My Son was diagnosed with PDD-NOS as well (he is 2 1/2 yrs old) – we realized he has Hyperlexia (Very Intense fascination for numbers and alphabets – and at 2 1/2 – he can read sentences – but does not understand them)- as i was able to check all the points you have mentioned above – except for my son is socially interactive with others and regression (Or maybe we were not keen enough to observe regression)
I see that your post is almost 6 months old. How is Daniel doing? Hope he is progressing as you would want him to.
If you have time and patience – please share some information with us on how to deal with Hylerlexia (PDD-NOS) so we can help my son.

Thank You.

Hi Raghul…thank you for reading and posting. With Daniel, while he certainly still enjoys letters and numbers (a lot), it never evolved into true hyperlexia and he is not fixated the way he used to be. As with seemingly everything, he is a bit of an edge case. The best advice I can give you though is to follow the Yahoo hyperlexia group, follow Priscilla Gillman on Facebook (and read her book, the anti-romantic child), and consider reading “Reading too soon”. The group is probably the best though – lots and lots of supportive parents who have many years behind them in dealing with hyperlexia (http://health.groups.yahoo.com/group/Hyperlex/ – if you reach out with a question, you will get lots of responses). I’ll send you an email too but I thought I’d post here since you commented :).

Thanks for the inputs – trying to get in touch with other parents with similar symptoms through the therapist – hope luck shows up…

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