Tuesday, January 21, 2020

Frequently Asked Questions About Hyperlexia

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Answering the most commonly asked questions about hyperlexia.

Not many people know about hyperlexia, but when people do stumble upon it and find that it fits their child or even themselves, it's like a big light bulb moment.

Then the questions start coming in. How does it get diagnosed? What's next? What are the three types? How do I help support my hyperlexic child? What if my toddler is obsessed with letters, but not yet reading...is he still hyperlexic?

The list goes on and on.

So I thought I would finally tackle some of the most frequently asked questions about hyperlexia.

This list is a combination of:

  • Questions that I am personally asked about on a regular basis
  • Phrases that people type into Google and then end up on my blog (as sourced from stats in my Google Analytics and Google Search Console, if you really want to know)
  • Questions that I frequently see variations of in hyperlexia support groups

Consider this your crash course on hyperlexia...shall we dig in?

What is hyperlexia? Answering the most frequently asked questions about hyperlexia

What is hyperlexia?

Hyperlexia can best be described as a syndrome characterized by the following:

  • A precocious, self-taught ability to read words well above age level that's apparent before the age of five
  • Significant difficulty understanding and using verbal language
  • Significant difficulties with social interactions
Want to learn more? Read what is hyperlexia?

How common is hyperlexia? Is it rare?

Anywhere from about 5-10% of autistic children are believed to have hyperlexia as well, so it's relatively rare. Read more here

"Hyperlexia is still considered a rather rare phenomenon." - Grigorenko et al. (2003), Annotation: Hyperlexia: disability or superability?

What are the signs of hyperlexia?

The three key signs or traits of hyperlexia were summarized earlier as part of the definition:

  • Precocious ability to read
  • Difficulty processing spoken language
  • Unusual or abnormal social skills
However, there are lots of other traits of hyperlexia to consider. One, in particular to note, is the intense fascination with letters, numbers, maps, or visual patterns during the toddler and preschool years. As noted in Reading Too Soon, hyperlexic children begin to show their extraordinary ability to identify letters and numbers between 18 and 24 months of age. And they often begin to read words by three years of age.

It's important to note that this skill is not taught. These kids simply start reading on their own one day.

Learn more about the signs of hyperlexia here.

If a child has all the signs/traits of hyperlexia, but isn't reading, is it still hyperlexia?

The simple answer is no. This quote from Hyperlexia: Therapy That Works bests answers this question:

"Strictly speaking, these children are not hyperlexic because they are not reading. Some children who do not read at 2 or 3 years old may still develop reading decoding or sight-reading at 4 and 5 years old and may then be diagnosed with hyperlexia." - Adkins et al., Hyperlexia: Therapy That Works

Is hyperlexia a stand alone diagnosis?

No, it is not a stand alone diagnosis. It is often given as a label alongside another diagnosis, such as autism. Read more about the hyperlexia diagnosis here.

Is hyperlexia in the DSM?

It does not appear as an official diagnosis in psychiatric and psychological diagnostic manuals, such as the Diagnostic and Statistical Manual of Mental Disorders (DSM). I believe it's recognized as part of autism spectrum disorders though like a splinter skill or something.

What causes hyperlexia?

It's a neurological difference. A hyperlexic brain is simply different and learns in a different and unique way. If you want to dig into the neuroscience of hyperlexia, this fMRI case study is fascinating!

Is there a test for hyperlexia?

There isn't, but a psychologist by the name of Frederick Leonard was working on something called the Hyperlexia Profile Builder in 2018. He sent me a copy to look at and it looked interesting. I've tried to get in touch with him recently, but no luck. I'd love to see if he has done any further development on it.

Often, hyperlexia will be "diagnosed" during an autism assessment by a psychologist.

Kupperman et al. (1998) wrote about the diagnostic evaluation process for hyperlexic children. It might be worth reading to get a better idea of things that are considered when "diagnosing" hyperlexia.

What are some hyperlexia "symptoms" in toddlers?

I really dislike the term symptoms (mostly because it has negative connotations and seems to be paired with diseases, which hyperlexia is not). That's why I put it in quotations. Anyway, personal opinions aside...

There are a few common signs of hyperlexia that you can spot in toddlers, such as:

  • Can identify all letters before age 2
  • Intense fascination with letters, numbers, or similar
  • Echolalia
  • Lack of conversational skills
  • Shows an interest in books and written words
  • Builds letters out of other objects

Who can diagnose hyperlexia?

Often it's a psychologist during an autism assessment that diagnoses hyperlexia. Sometimes, however, it's a speech therapist who recognizes and identifies the hyperlexic child. But finding a professional who's even aware of hyperlexia can be difficult so you might have to be the one to first bring it up and ask for a referral to someone familiar with it. Read more here

I think my child might be hyperlexic. Now what?

Already convinced your child is hyperlexia? Here are the next steps you can take.

I'm an adult and I think I might be hyperlexic. What does hyperlexia in adulthood look like?

There aren't many resources on hyperlexia to begin with and most of the resources focus solely on hyperlexic children, like I do here. So I'm aware that there isn't much available to hyperlexic adults at the moment and I hope that will change in the future. One day I'd love to write more about it, but since I don't know much about hyperlexia in adulthood myself, I don't feel comfortable writing about it yet.

However, a good starting point would be to join an autistic-led community and connect with other hyperlexic adults (there are a surprisingly good number of them in some of these groups - I know because I've asked around!).

You might find these videos from hyperlexic adults interesting as well.

What are some resources for a hyperlexic adult?

Honestly, the best thing I can recommend for you are the following:

  • Learn more about hyperlexia with one of these books or by reading through some of the research
  • Search through the #ActuallyAutistic or #Hyperlexia hashtags on Instagram or even Twitter. I've been able to connect with a lot of hyperlexic adults that way, especially on Instagram (don't use Twitter much these days).

What is the difference between hyperlexia and autism? Or are they the same?

Hyperlexia and autism are not the same, although they do have lots of overlapping characteristics and traits and many people are diagnosed with both. The main difference between the two is the precocious self-taught ability to read. That is the hallmark of hyperlexia.

It's important to note that not all hyperlexic individuals are autistic and not all autistics are hyperlexic.

Does hyperlexia go away or fade?

No, it's a neurological difference. Once hyperlexic, always hyperlexic.

The intense fascinations of the early years, however, does lessen in intensity and the passion for letters and numbers may fade for some and/or evolve into other interests, which I'm guessing might be the reason this question is asked as often as it is.

Can hyperlexia be cured?

No, it's a brain difference not some disease needing to be cured.

How do you treat hyperlexia?

Hyperlexia isn't an illness or disease that needs treatment. Instead, hyperlexic children can benefit from certain types of therapies to address common struggles with speech and language, sensory integration, and fine motor skills, for instance. You can read about the hyperlexia therapy options here.

Are hyperlexic children gifted?

Yes many - if not all - hyperlexic children are indeed gifted. But I think this quote summarizes things best:

"Hyperlexic children are intelligent, often highly-gifted individuals. They have an intense curiosity and interest in learning. Older hyperlexic children may often be highly verbal and obviously academically gifted. These gifts at times may be so obvious that little attention is paid to the language difficulties of hyperlexia, or to the very nature of the hyperlexic learning style." - Charlotte Miller, Hyperlexia in Older Children (via Wayback Machine)

Is hyperlexia a disability?

Hyperlexia is a language comprehension disorder and can definitely be considered a reading disability. Think of it this way...dyslexia is essentially the opposite of hyperlexia. So if dyslexia is viewed as a disability, then so should hyperlexia.

"If dyslexia is viewed as disability, then hyperlexia (defined as a comprehension disorder) should also be viewed as a disability." - Grigorenko et al. (2003), Annotation: Hyperlexia: disability or superability?

However, these researchers, in the end, argue to interpret hyperlexia as a superability "rather than as a disability exhibited by a portion of the general population."

So I guess the answer is...it's complicated? Or are they just suggesting that hyperlexia is a savant or splinter skill? Which leads me to the next question...

Is hyperlexia a savant skill or "splinter skill"?

In the systematic review of hyperlexia from Ostrolenk et al. (2017), this question is touched upon. Specifically, it mentions:

"Fifty years after the term was first introduced, hyperlexia is often reported as one of the savant abilities in autism." - Ostrolenk et al. (2017), Hyperlexia: Systematic review, neurocognitive modelling, and outcome

This question is also addressed in Hyperlexia: Therapy That Works and says:

"A savant or splinter skill is an isolated ability that appears within individuals with developmental disabilities. Generally, these skills have no relationship to other aspects of the individual's functioning. Hyperlexia is not an isolated skill, but a tool which can be used to develop language, to modify behavior and to help the individual make sense of the world." - Adkins et al., Hyperlexia: Therapy That Works

Darold Treffert, an expert in savant syndrome, says:

"In this group [hyperlexia, type II] it is the hyperlexia that raises the 'savant syndrome' questions with some clinicians labeling the hyperlexia a 'splinter skill.'...However...the precocious reading ability can be a valuable tool for teaching language and social skills. As such, rather than being marginalized or trivialized as a 'splinter skill,' clinicians should embrace the hyperlexia and capitalize on its value as a treatment tool." - Darold Treffert, Distinguishing autistic-like behaviors from autistic disorder

He then adds:

"Hyperlexia can be a splinter skill in savant syndrome in a child with an underlying Autistic Spectrum Disorder, but it is not necessarily so." - Darold Treffert, Distinguishing autistic-like behaviors from autistic disorder

I really wish I could find a copy of the full article titled "Defining the savant syndrome" because it has a quote that intrigues me:

"For these reasons hyperlexia has an uncertain status as a savant skill." - Leon K. Miller (1993), Defining the savant syndrome

I really want to know what the reasons are! 

Regardless, hyperlexia is not a splinter skill. However, old literature and resources might refer to it as such so just something to be mindful of when reading through older resources.

What about IQ levels and hyperlexia?

Many hyperlexic children score poorly on intelligence tests usually due to the way in which questions are asked or due to their poor comprehension skills. There is obviously going to be a lot of variability in terms of IQ, but here are some interesting quotes regarding hyperlexia and IQ.

"Intelligence is not impaired by hyperlexia." - Susan Martins Miller, Reading Too Soon

"Intelligence was most frequently in the normal range when measured by non-verbal tests" - Ostrolenk et al. (2017), Hyperlexia: Systematic review, neurocognitive modelling, and outcome

How can I help improve my hyperlexic child's comprehension?

There are lots of different things you can do to help improve your child's comprehension. You can:

  • Label objects around the house
  • Use patterned language and scripts
  • Practice sequencing
  • Teach WH questions specifically (e.g., who questions are always answered with the name of a person)
  • Read books with speech bubbles
You can find tons of resources and printables to help with comprehension in the Comprehension Resources section of the blog.

What are the types of hyperlexia?

There are a few proposed theories of different types of hyperlexia. For instance, Rebecca Williamson Brown proposed two types (source):

  • Hyperlexia as a language disorder
  • Hyperlexia as a visual-spatial learning disorder
But perhaps the most well-known is Darold Treffert's proposed types of hyperlexia (source):

  • Type I: Bright, neurotypical children who learn to read early
  • Type II: Autistic kids who have hyperlexia as a "splinter skill"
  • Type III: Children who read early, but are not autistic, but show autistic-like symptoms
I personally do not put a lot of weight on subcategorizing hyperlexia. There are a lot of reasons why, which I won't get into here, but many parents find the classification helpful, which is why I am providing this information.

Other Resources You'll Love

Hyperlexia FAQs: what is hyperlexia? what are the types of hyperlexia? and other frequently asked questions about hyperlexia