Wednesday, January 06, 2021

Understanding the Hyperlexia "Diagnosis"

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What you need to know about the hyperlexia diagnosis, as well as information on how to get your child identified as hyperlexic.

One of the most frequent questions that I get asked about hyperlexia is regarding the diagnostic process. Who can diagnosis hyperlexia? How can you 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 so you can better understand how to go about getting your child identified as hyperlexic.

What you need to know about the hyperlexia "diagnosis" and getting your child identified as hyperlexic

Important Points About Identifying the Hyperlexic Child

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.

Since it isn't a standalone diagnosis, the label of hyperlexia is often given alongside another diagnosis. Hyperlexia is often identified alongside an autism diagnosis, in particular. However, it can also be identified alongside other diagnoses such as pervasive development disorder or expressive language disorders (see more on page 3 here). 

It's important to note that not every hyperlexic child will be autistic, just like not every autistic child will be hyperlexic. However, it has been found that 84% of hyperlexic individuals are either autistic or have several autistic features (source). So there's a good chance that your child will be both hyperlexic and autistic.

What About the 3 Types of Hyperlexia?

Many parents ask how they can get a hyperlexia 3 diagnosis.

Although there have been three types of hyperlexia proposed, most hyperlexic children will just be identified as hyperlexic. Don't expect to receive a diagnosis of hyperlexia type I, II, or III.

There are a couple of reasons for this. 

One, the research doesn't necessarily support these three types. They are, after all, just one proposed theory.

Two, most professionals don't even know about hyperlexia, let alone the three types of hyperlexia. Hard to "diagnose" something you don't know exists, right?

Finally, there is a lot of disagreement on how to best describe and define hyperlexia. As a result, not all experts agree on the three types and instead "argue that the term hyperlexia be reserved to describe only those individuals who (a) demonstrate a reading comprehension deficit in the absence of deficits in decoding skills and (b) have been diagnosed with ASD." (Robertson, 2019

Kupperman (1998) also notes that "the diagnosis of hyperlexia does not apply to children who are precocious in reading but who do not exhibit a significant language disorder." (source)

For me, the type doesn't matter. Instead, knowing the term hyperlexia applies to my child is all that matters. It gives me the information I need to best understand my kid and better support their needs. 

I encourage you not to dwell too much on the type and instead focus on the fact that your child is hyperlexic regardless. 

Who Can Identify Hyperlexia?

Your best bet for getting your child identified as hyperlexic is to find a professional who is knowledgeable about hyperlexia. But that's easier said than done, I know.

However, if you can't find someone knowledgeable about hyperlexia, look for someone who is knowledgeable about autism. They're more likely to have heard of and/or have experience with hyperlexia. After all, hyperlexia is quite common in autistic populations (anywhere from 5-10% of autistics are said to be hyperlexic).

In my experience from talking with other parents of hyperlexic children, their child has been identified as hyperlexic in one of four ways:

  • From a psychologist, usually during an autism evaluation
  • From a neurologist
  • 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 my son succeed.

Quite a few speech therapists 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, have a major aha moment, and push professionals to confirm their suspicions. 

Just a quick note to any adults who are discovering that they themselves might be hyperlexic or even to parents who can't find a professional knowledgeable about hyperlexia. Self diagnosis is totally valid, even without the professional confirmation.

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!

What you need to know about the hyperlexia "diagnosis" and getting your child identified as 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.

If you'd like to learn more about what kinds of assessments are involved in identifying hyperlexia, please read more about how to diagnose hyperlexia here.

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