an annotated, selected hyperlexia bibliography

We have much to learn about “subtypes” or “patterns” within autism. The DSM-5 just scrapped the most famous subtype, Asperger’s Syndrome, due to lack of evidence.

Nonetheless, anyone trying to understand themselves or a loved one will scour books and the Internet for anecdotal data that clicks. We all want to read about people who resonate with our own experiences. No matter where someone is on the spectrum, they’ll be able to find others who are remarkably similar, and still others they have little in common with.

People use the term hyperlexia for one of the less-well-known anecdotal subtypes, and I think I’ve found most of the materials on this subject. I thought I’d make a list of some favorites.

I should say, we’ve found generic “high-functioning” autism and Asperger’s resources more useful overall. Still, hyperlexia resources add extra ideas.

The very best resource may be paying attention to our son and what he’s doing today.

Background

The word hyperlexia is overloaded. In speech therapy it can refer to readers who are excellent at decoding but poor at comprehension (a sort of “reverse dyslexia”). But it can also refer to any precocious reader, to autistics who learn to read precociously, or to autistics who learn to read but have a lot of trouble with most other skills. There’s no “official” definition of hyperlexia (there’s no equivalent to the DSM criteria for autism).

My son and I both learned to read at age 2. For us, I believe reading is one example of a general love of learning information; not just any information, but structured information. For example, if you have things which go in a certain order, or can be placed in categories, those things are much more interesting to memorize. Letters, words, and numbers are at the top of the list. My son also loves street names and driving routes, for example.

He and I both like to explore alternative ways of organizing the same information. So for example, putting letters in reverse order, or sorting them into the three Handwriting Without Tears categories, or listing all the routes that could be taken to drive from point A to point B.

That’s what hyperlexia means to us. I don’t believe it is that different from the prototypical Asperger’s/HFA autistic, but it seems possible that there’s a little extra in common between kids who find letters fascinating at an early age.

From what my mother says, I was a more Aspie-prototypical “little professor” kid, while my son learned language in a different way that one hyperlexia source describes as “foreign language phrasebook” and another as “context-appropriate delayed echolalia.” He seemed to be brute-force rote-memorizing his way through language, treating every sentence as its own vocabulary word (while the more typical language development path catches on to syntax more quickly). On one formal language assessment, he had a gap between grammar (below average) and lexicon (above average). Over time his language has improved.

My son likes to learn and play with structured information. As far as I can tell it isn’t an anxiety response or otherwise something to pathologize. He finds it fun and interesting.

We’ve used this to teach. For example, he didn’t like to work on handwriting until he discovered that Handwriting Without Tears put the letters in three categories and gave him numbered steps to write each letter.

Bibliography

Phyllis Kupperman’s presentation. This may be the most comprehensive starting point. Phyllis Kupperman at the Center for Speech and Language Disorders in Chicago has seen many hyperlexic children. She has a continuing education presentation at linguisystems with lots of background, references to hyperlexia-related research, and her own observations. To read this presentation you have to pretend to be a speech therapist and sign up on the site (it’s free).

The Center for Speech and Language Disorders, Phyllis Kupperman’s practice, has some hyperlexia information online and a bibliography.

The Hyperlex discussion group has a lot of great people along with some useful info in the “Files” area. See the group here.

Priscilla Gilman’s book and writing. Ms. Gilman has a lovely memoir, The Anti-Romantic Child, about her son who has hyperlexia and autism. She wrote an abbreviated version of her story in this Newsweek article. She also wrote about the value of her son’s reading in the New York Times. Her work was meaningful to us because her account of her son was the first time we “recognized” a child very much like ours.

Reading Too Soon by Susan Miller. This out-of-print book has a lot of great detail. Keep in mind that much conventional wisdom about autism has changed over the last 20 years. Ms. Miller describes the “foreign language phrasebook” style of speech, and makes this observation:

Language and behavior can be taught very specifically. It is important to understand that hyperlexic children will not “pick up” from the culture around them the way most children do. Given a demonstration or visual model, however, these children can use their strong memories to their advantage.

I believe this is the same point as Hans Asperger’s in 1944: that the children he described did not learn “instinctively” and rather fell back on “the intellect.” (As you can see from the name of this blog, I value this observation as a way to describe myself and my son. Though at the same time, I haven’t found a characterization of what explicit/implicit intellect/instinct might mean in a scientifically-observable sense.)

Drawing a Blank: Improving Comprehension for Readers on the Autism Spectrum by Emily Iland — at last, a book in print! This one is specifically about strategies for readers who struggle with comprehension. As a parent of a child with autism, be aware that dyslexia (where the hard part is DECODING) is a MUCH more common reading disability than hyperlexia and autism (where the hard part is COMPREHENSION). The task of decoding may be very autism-friendly, at least for certain kinds of autism. Because dyslexia is more common, many educational materials and teacher instincts are backward for hyperlexics.

Drawing a Blank has a few pages of discussion about hyperlexia and possibly-associated traits. (Update: Emily Iland kindly commented over here that the whole book is really about hyperlexia.)

Hyperlexia III: Separating ‘Autistic-like’ Behaviors from Autistic Disorder; Assessing Children who Read Early or Speak Late by Darold Treffert. One of the most commonly-referenced hyperlexia articles online, I found this one both fascinating and frustrating, so I’ll write a bit more about it. (For some reason, direct links to the article don’t work; you should be able to find it for free by searching the web for the title. Dr. Treffert also wrote a shortened version for Scientific American.)

Dr. Treffert argues that early reading may be simple precocity (“hyperlexia I”); a “splinter skill” amidst autism (“hyperlexia II”); or an autism-like developmental pathway he calls “hyperlexia III,” in which autistic traits fade over time.

This article attempts to distinguish autism-like from autism, an exercise that I have a lot of trouble buying into. To me, it’s also problematic to describe any skill as a splinter skill, something Priscilla Gilman gets at. Skills are skills, especially when they’re as powerful as reading.

Dr. Treffert does not suggest doing nothing in the case of hyperlexia III. He suggests seeking intervention as for autism: “Speech and language therapy, occupational therapy, and ABA to address the areas of speech and comprehension, sensory issues, social isolation and ritualistic behaviors, for example, can all help with the autistic-like symptoms, just as they do in those children with actual autistic disorder.”

My view, which seems to be shared by our local medical community, is that anyone who has autistic-like symptoms and needs those kinds of interventions has autism. (And from a practical perspective, if a person needs those interventions, they had better be diagnosed with autism or they will not get adequate help — barring wealthy benefactors.)

On the Internet, I’ve seen more than one parent grasp at the “hyperlexia I, II, III” categories in order to escape the dreaded word “autism.” Please remember that simply avoiding the word does not change a person, while appropriate help may well do so. Children may be precocious readers, gifted, introverted, and have significant difficulty in areas such as social interaction and motor skills, as I did.

For the smartest kids, earlier intervention may well be the best, because they may be the most self-aware when older, and very responsive to early help. Parents’ fear of autism doesn’t do these kids a service. (See also this book and this book, but most importantly remember to see a dimensional person, don’t get hung up on categories. Don’t imbue the word “autism” with too much power; as you can see from Dr. Treffert’s paper among others, the experts don’t even agree on what it means.)

My mother read Dr. Treffert’s article and felt that I was a good fit for “hyperlexia I” while my son was a good fit for “hyperlexia III.” But I was also a good fit for Asperger’s Syndrome and was socially incompetent throughout school, with repercussions into adulthood. The key trait Dr. Treffert notes for “hyperlexia III” is “affection,” but plenty of kids with autism are both affectionate and have autistic traits that stick around long-term (look no further than Priscilla Gilman’s son, or our son so far, for examples).

I very much appreciated Dr. Treffert’s attempt to unpack some different developmental patterns and the characteristics he had seen in his career. I also appreciated knowing my son was not alone (the “hyperlexia III” description does fit him well).

At the same time, I think it’s more mainstream (and likely more useful in practice) to look at hyperlexia and affectionate/attention-seeking behaviors as “good signs” within autism, rather than indicators of a not-currently-recognized condition distinct from autism. For now, autism is a family of autism-like conditions, and nobody really knows how to break them apart.

It’s safe to guess that hyperlexia I, II, III are points on a spectrum rather than discrete entities, too.

Hyperlexia in Children with Autism Spectrum Disorders, Tina Newman et al. PDF document here.  Some interesting findings: that decoding-with-poor comprehension exists; and that hyperlexic autistics had strong nonword reading (were decoding, not sight-reading). On a more personal note, the paper mentions that “Two families reported that their young children would pull them around parking lots to read all the numbers and letters on the license plates,” an experience we remember well (our son did this often from age 2-3 or so).

This paper also has a lot of good references to trace if you’d like to start reading scientific papers related to autism and hyperlexia, though many are not available online. One notable piece of prior research cited,  from Fisher et al., found that hyperlexia was a strong indicator of positive outcomes in autism (note that this may be an alternative way to interpret Dr. Treffert’s “Hyperlexia III”).

A Descriptive Study of Hyperlexia in a Clinically Referred Sample of Children With Developmental Delays, Elena Grigorenko et al. On Springer here, though I think I found it as a free download someplace I can’t find right now. Two findings in this paper were that all of the hyperlexics among the 80 children studied were diagnosed with autism; and that hyperlexia was not associated with IQ (it was not more characteristic of the high-IQ children than the other children).

Incidentally, all these hyperlexia papers are great examples of more useful autism research. Scientifically, early reading by itself is almost certainly a red herring, in that there won’t be an “early reading” neurology. Rather, either some neurologies are more likely to learn to read early, or learning to read early affects development in important ways, or both. But it’s great to see researchers digging in to the autisms and looking for meaningful distinctions.

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One thought on “an annotated, selected hyperlexia bibliography

  1. Pingback: Book: “Rethinking Autism: Variation and Complexity” | Intellectualizing

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