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A few years ago, I learned that I have a condition called hyperlexia. This condition is characterized by learning language “out of order” in childhood – in fact, almost in the same manner that an adult learns a foreign language. I was actually misdiagnosed in childhood, however – I was thought to have a different but related disorder, and I was considered “cured” by the end of second grade. I’d always had some quirks, though. I learned that these were some lingering effects from hyperlexia (whose most obvious symptoms fade once the child conquers language). In order to learn more about myself and others with hyperlexia, I decided to join an email list sponsored by a prominent hyperlexia website.
The hyperlexia e-mail list I joined consisted of mostly younger moms – women in their 20s and 30s who had recently discovered that their children’s eclectic mixes of gifts and disabilities were caused by this one mysterious condition. I gladly shared my experiences with hyperlexia, hoping that there were at least a few “lurkers” on the list that were adult hyperlexics and could share in my challenges. I did indeed meet some such people, which was a wonderful experience. But it wasn’t until I began receiving emails from other “listmoms” that I realized how much my stories were appreciated. These emails would generally read something like “Thank you so much for your insight and for sharing your experiences with hyperlexia. I am growing to understand my 3-year-old son much more clearly because of you.” It took a few months of these emails for it to fully sink in – I could actually make a difference in some people’s lives through my triumphs and challenges with hyperlexia. I jumped at the chance, because I knew that were I at the same stage as these parents – having just learned that my child suffered from a relatively rare language disorder – I would have loved to talk to someone who had been through it all before.
Awhile after I had begun posting at the hyperlexia list, I perused another forum board dedicated to hyperlexia. I noticed that there were quite a few teens who had posted there, wondering what this disorder was that they had just been diagnosed with. Although I had searched for an email list for hyperlexic teens, I hadn’t had any luck finding one. That was when I decided to start my own. This online support group for teens with hyperlexia and related disorders, which I founded in December 2001, has now welcomed about 30 members; and we always know that we can come to our fellow list members when we’re struggling with something or just want to vent about our shared “quirks.”
Although the world of hyperlexia is currently a very small one, it uplifts me to know that I have made a difference in it. Perhaps through my small contribution, combined with the contributions of others, hyperlexia will become more well-known and fewer children and teens will be misdiagnosed such as I was. I also hope that everyone can gain insight from my experience – and understand that even the seemingly smallest gestures can positively influence the lives of others.
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