Counting Triumphs, Ctd

Andrew Sullivan —  Apr 13 2011 @ 9:02am

A reader writes:

The Dish has been an important part of my life for a long time now, but I've never been so personally touched by it than when I read the post on Ms. Gilman's piece about her struggles with her son's hyperlexia. Ever since my brother was diagnosed with hyperlexia almost a year ago (he's going to be five years old in May), dealing with his condition has been a crushingly lonely experience.

Since hyperlexia was classified comparatively recently (1967, according to the Wikipedia article), there is very little literature online, there are very few specialists, there are very few case studies, and, worst of all, there is very little awareness.

There is a lot of emotional support out there for most families with special-needs children – be it Down Syndrome or Asperger's – but when it comes to hyperlexia, almost no one has heard of it. Many, including myself, assume at first that it must be the opposite of dyslexia, which sounds like it must be a good thing! My brother is hyperlexic! But once I learned that hyperlexia is actually a form of autism, and that my brother would never lead a normal life, and that all of my hopes and dreams for him would never come to be, and that he would never be able to have the kind of childhood that I had, and that he would always have difficulty making friends and relating to his peers, I felt a kind of pain I didn't even realize I was capable of experiencing. I cried. I broke things. I questioned my faith. My anger and my grief at the unfairness of it all was unbearable.

Why couldn't I be the autistic son and he be the Ivy League-educated son? I have done plenty in my life to the deserve the loneliness, the frustration, and the isolation that my little brother has been condemned with, whereas he hasn't done anything to deserve that.

Like Ms. Gilman, I came to view every aspect of his personality as nothing more than a symptom. No words can really describe the kind of anguish I felt when I learned that what I once viewed as endearing are really just manifestations of his disorder: his perfect recitations of entire episodes of Thomas the Tank Engine, his use of dialogues from Thomas to express himself (like screaming "I'm over-heated!" during a tantrum), his instant mastery of the Ipad (he knows how to use it better than I do), his memorization of roads and routes (he knows his way around town better than my sister, who'll be driving next year), his precocious reading ability (there are few words he is incapable of reading or spelling), and his obsession with numbers (he can count to 100 – forwards and backwards – in three different languages).

But again, the most painful part about this was the fact that I had so few people to turn to; I had to deal with the pain on my own. For a while, my parents even forbade me from telling others about his condition, lest he be stigmatized as the autistic kid (not realizing that this only further alienated people, who simply could not sympathize with or understand his bizarre manner of speaking and behaving). That's why it seemed almost like divine providence when I came across a post about something so relevant to my own life on THE DISH! It truly felt like a beacon of light had shown through in a cavern of darkness. Ms. Gilman's article was so touching because it mirrored by exact experience. And most important of all, by relating how she coped with her son's problems – by resetting her expectations – I too have been given some hope.