Wednesday, June 08, 2016

"Diagnosing" Hyperlexia

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What is hyperlexia and who can diagnose hyperlexia? Tips for how parents can get their child diagnosed for hyperlexia.

One of the most frequent questions that I get asked about hyperlexia is regarding the diagnostic process. Who can diagnosis hyperlexia? How can I get the hyperlexia diagnosis? And so on. Important questions, yes, but it isn't that simple.

Because hyperlexia is currently not a standalone diagnosis.

That makes things tricky for parents like myself trying to get help for their child.

So I thought I would cover as much as I can about the "diagnostic" process regarding hyperlexia.

How is hyperlexia diagnosed? Tips for how parents can get their child diagnosed with hyperlexia

The "Diagnosis" of Hyperlexia

Hyperlexia is not a diagnosis by itself and, as such, does not appear as an official diagnosis in psychiatric and psychological diagnostic manuals. 

Instead, hyperlexia is a practical label. That means, the label of hyperlexia gives parents, professionals, and educators a better understanding of how the child thinks and learns. Having a label of hyperlexia also makes it easier to find, develop, and use strategies that will actually help your child.

Although there have been three types of hyperlexia proposed, most children will usually receive just the general label of hyperlexia. They will usually not be officially labeled as hyperlexia type I or type II or type III. Mostly because the research doesn't necessarily support these types yet as it is just a proposed theory. However, I find that most parents know which type their child fits into, if that is something that they find useful. For me, the type doesn't matter so much as the actual label of hyperlexia.

Often, hyperlexia is diagnosed alongside other diagnoses, which can further help determine which "type" of hyperlexia your child has. Hyperlexia is often diagnosed alongside an autism diagnosis. However, it can also be identified alongside other diagnoses such as pervasive development disorder or expressive language disorders (see more on page 3 here). But not every child with hyperlexia will have one of these other diagnoses.

Who Can "Diagnose" Hyperlexia?

In my experience from talking with other parents of hyperlexia children, they have received the hyperlexia label in one of three ways:

  • From a psychologist, usually during an autism evaluation
  • From a speech therapist, usually after the parent raises the possibility of hyperlexia
  • Self-diagnosed and confirmed by professionals
Since hyperlexia is not an official diagnosis, you will likely not receive a "diagnosis" on paper. However, many professionals will either introduce you to the label of hyperlexia or will confirm your suspicions. 

For us, we learned about our son's hyperlexia during his autism evaluation when the psychologist introduced us to the labels of hyperlexia and hypernumeracy to describe his skills and abilities regarding superior decoding of language and math. I am still so grateful to the psychologist for introducing us to hyperlexia and hypernumeracy because it certainly made everything so clear! We finally got the answer that we needed and were able to find appropriate strategies to help J succeed.

Quite a few speech pathologists that we have interacted with haven't heard of hyperlexia or know so little about it. So I don't think we would have been able to get my son identified as hyperlexic in this manner. Other parents have had varied experiences with this avenue.

However, had I been aware of hyperlexia when J was a toddler, I am positive that I would have self-diagnosed him with it and then raised my suspicions with professionals to confirm the "diagnosis." Many parents seem to find themselves in this position. They learn about hyperlexia, cry with relief, and push professionals to confirm their suspicions. 

To me, you know when your child has hyperlexia when you see pictures and videos of other kids with hyperlexia acting exactly like your child. I know that when I finally googled hyperlexia and watched some videos, looked at photos, and read about hyperlexia that I had finally found what J had. It was so clear that he was hyperlexic!

More Information on the Hyperlexia Label and its "Diagnosis"

The best resource that I have come across is this hyperlexia pamphlet from the Canadian Hyperlexia Association, which, unfortunately, does not exist anymore. For further information on the assessment and evaluation process for hyperlexia, carefully review pages 3-5.

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How is hyperlexia diagnosed? Tips for how parents can get their child diagnosed with hyperlexia
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