Monday, July 25, 2011

Hyperlexia vs. autism

Priscilla Gillman's recently released book The Anti-Romantic Child raises anew for me the question of of autism subtypes. Here are some excerpts about Gilman's son Benj's development:

He recognized all the letters by about fourteen months (he loved to find the a, b, c, d on a J. Crew of Pottery Barn page), receited the alphabet with ease at sixteen months, read single words at twenty-two months, and began to read entire books fluently just after turning two...

Numbers were similarly fascinating to him. He could count from one to twenty by about fourteen months, and from one to one hundred shortly thereafter. He was able to tell time on our VCR counter by eighteen months. He learned hor to tell time digitally, and is we said "What time is it?" he would run up to the VCF, look at it, and proudly say, "Time is two fifteen," or "three thirty," or whatever. He would often grab started strangers' watches in the supermarket and greet visitors to our house with a friendly swipe at their watch.

...By studying [children's art books], Benj was able to recognize all shapes (not just tirangle, circle, square, but also hexagon, star, rhombus, and octagon) and colors (including orange, gray, and purple) at a little under two years old.

When he encountered a new person, he'd read the writing on their T-shirt, or call out the time on their watch, or find a letter of number in the shape of their jewelry... As a two year old, he wanted to spend most of his team reading, counting, or making long alphabet and number chains and spelling out words with his letter/number blocks. He'd cover the floor of our small apartment with these clocks, arranged in perfectly straight lines, with A or 1 at the front and Z or 20 at the end.

From about age two on, his obsession with letters and numbers dominated all of our outings...
And here is Benj, at around two and a half, visiting a preschool class:
He delightedly beat out the rhythm of the song they were singing and joined in perfectly on the chorus despite having never heard the song before... Everyone was watching him and he didn't notice at all.
The song ended and Benj--alone--clapped vigorously. Suddenly he strode forward purposefully toward the group. He walked right up to the group of kids, then pushed past a child on his way to... a huge hoop earring dangling from the ear of the teacher. Fasinated, he reached out to grab the earring and cried, "The letter O!"
This last episode is what spurs Gilman's worries. Re-examining his development, she realizes that:
Benj had never used gestures to express his desires and feelings: no waving, no pointing, no shaking his head no or nodding yes...
And, despite his on-target language development (single words just before one year; two-word phrases at two):
Most of Benj's spoken language was actually echolalia (repeating or echoing other people's language rather than creating spontaneous sentences).
With the echolalia comes pronoun reversal:
When he work up in the morning or from a nap and we went in to him, he'd say "Did you have a good sleep"? or "Are we getting up?" ... When he was done eating and/or wanted out of his high chair, he'd say "Are you done?" or "Do you want to get down?"
Googling phrases about early reading and trouble answering questions, Gilman soon find herself reading about a condition called hyperlexia, defined by the following core symptoms:
  • A precocious ability to read words, far above what would be expected at their chronological age or an intense fascination with letters or numbers
  • Significant difficulty understanding verbal language
  • Abnormal social skills, difficulty in socializing and interacting appropriately with people
Where, in all this, is autism? That Benj might be autistic, Gilman admits, is her deepest fear. And the Yale Child Study Center, evaluating Benj, allays it:
Benjamin did not "meet the diagnostic criteria for autistic spectrum disorder"--primarily because he was so "warm" and "related."
"Warmth" and "relatedness" do not appear in the official DSM-IV criteria for autism. Instead, we have (bold-faces are mine):
(A) qualitative impairment in social interaction, as manifested by at least two of the following:

1. marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction

2. failure to develop peer relationships appropriate to developmental level

3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people, (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)

4. lack of social or emotional reciprocity ( note: in the description, it gives the following as examples: not actively participating in simple social play or games, preferring solitary activities, or involving others in activities only as tools or "mechanical" aids )
(B) qualitative impairments in communication as manifested by at least one of the following:

1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)

2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others

3. stereotyped and repetitive use of language or idiosyncratic language

4. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

(C) restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least two of the following:

1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus

2. apparently inflexible adherence to specific, nonfunctional routines or rituals

3. stereotyped and repetitive motor mannerisms (e.g hand or finger flapping or twisting, or complex whole-body movements)

4. persistent preoccupation with parts of objects

(II) Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:

(A) social interaction

(B) language as used in social communication

(C) symbolic or imaginative play
As for "hyperlexia," it is nowhere to be found--at least in the DSM-IV. In the forthcoming DSM-V, of course, the same will be true of "Asperger's Syndrome." Eventually, perhaps, this will dampen the fear and desperation that is typically inspired by the alternative diagnosis of autism.

8 comments:

Anonymous said...

Hi, I just discovered your book and am devouring it; thank you. And through this post I've also now discovered Priscilla Gilman's book. I'm just confused about what you're saying in this post and was hoping you could clarify: are you saying Gilman is wrong for being concerned about autism in her son because hyperlexia does not appear in the DMV? You say that not having hyperlexia or Asperger's in the next DMV may "dampen" fears about autism; I'm confused about what you mean by this. Thanks.

Katharine Beals said...

Thanks, Anon! What I'm getting at is that Asperger's and Hyperlexia are somewhat problematic alternatives to the autism diagnosis (b/c of inconsistent application of fuzzy guidelines) that partly appeal because they don't carry the same sting. So one effect of only having "autistic spectrum" as an official DSM category is that, once it starts applying to a higher number higher functioning individuals, it will lose some of its inherent negative connotations--or, at least, gain some positive ones.

ChemProf said...

But if more and more "barely autistic" kids get grouped under the ASD label, doesn't that make the "tiny disability" issue even worse?
http://oilf.blogspot.com/2010/07/how-to-ensure-that-autism-is-tiny.html

Katharine Beals said...

Right, that would be the downside. Good point.

But the cherry picking issue also involves something somewhat independent to the degree of autism--namely, behavior. Some mildly autistic kids present large behavioral challenges, while other, more deeply autistic kids present fewer. For camps, social skills group, and schools, the behavioral issues are sometimes as, or more, important than the profundity of autism in determining who gets in.

ChemProf said...

Here's a bet for you -- while Asperger's goes away to be replaced by ASD, Sensory Processing Disorder is being added to the DSM. I'll bet a lot of these borderline cases wind up with SPD diagnoses, especially since most kids with mild autism/Asperger's have some kinds of sensory issues as well.

And yes, I'm displaying my own ASD by coming back to this one weeks later, but I was thinking about it today in reading another blog I read regularly, whose son has an SPD/ADD diagnosis, but she is sure he can't be ASD.

bhuvaneswari muthusamy said...
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bhuvaneswari muthusamy said...
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Anonymous said...

Hi,I'm going to buy your book now. My daughter has Hyperlexia. I could not find a suitable school program for her, so I home-school her. In one hand she is very smart,
on the other hand she has difficulties in comprehension, I have never heard of before. Every day it's like a new journey in to her brain. Every day we read a ton of books while I help her comprehend what's behind those words. We play together and love each other, we sing and dance.. She has a very interesting personality. She taught me a lot about life, love, patience, persistence and hard work. God bless her and other special kids like her.