Hyperlexia and the Radical Concept of Autistic Advantage

reading-kid-1I am many kinds of weird, but the first label I remember is “bookworm.” My parents discovered I was a really easy kid to mind after I could sit up on my own; just put a big book or catalog in the floor and I would sit for hours turning the pages and staring at them.

I learned speech by intense observation and repeating whole adult-sounding paragraphs cribbed from newscasters and TV commercials. I was initially behind my peers in reading, but went through a mental expansion between first and second grades that suddenly landed me in “gifted and talented” special education. They tested my verbal IQ in second grade. After three questions, the lady switched to the adult version of the test which I also blew away. I went from barely grade level at the beginning of first grade to college level reading by fourth grade. Meanwhile, my physical and social development were stunted and I didn’t feel human.

This is a typical tale of a certain type of atypical child – the hyperlexic who becomes academically gifted but socially isolated. Hyperlexia is “a syndrome characterized by a child’s precocious ability to read. It was initially identified by Norman E. Silberberg and Margaret C. Silberberg (1967), who defined it as the precocious ability to read words without prior training in learning to read, typically before the age of 5. They indicated that children with hyperlexia have a significantly higher word-decoding ability than their reading comprehension levels.[1] Children with hyperlexia also present with an intense fascination for written material at a very early age.” – Wikipedia

Most of the sparse material I found on hyperlexia is dedicated to imposing a system of subtypes with the sole purpose of divorcing it from autism. As the hilariously-named Darold Treffert, MD, puts forth in a lengthy article with no scientific merit, there are three subtypes:

Type I: Regular-ass smart kids who begin reading early but whose peers eventually catch up.  “This form of “hyperlexia” is not a disorder; it does not require treatment. These children, usually very bright, go on to have very typical, successful lives.”

Type II: Hyperlexics who exhibit “a savant-like ‘splinter skill’ associated with the autism.”  These are the ones who are in trouble, folks. But, first can I say that there’s no reason to call something autistic kids tend to excel in a splinter skill. It’s just a skill that need not be splintered away from the diseased tree that is the pathological autistic child according to Darold. He concedes, “However, the precocious reading ability can itself be a valuable treatment tool for teaching language and social skills and should not be marginalized or disregarded as unimportant or frivolous.” Then Darold shows his true colors by saying, “Unfortunately, as I will point out, some clinicians and other specialists hold that when precocious reading ability is present, and when coupled with comprehension, language and social difficulties, it is always part of an autistic spectrum disorder. I do not subscribe to that view.”

Type III: Early, obsessive readers who show lots of autistic traits, but then eventually “outgrow” the autistic traits which “fade over time.” The Type III description is too amazing to not include in full:

The hyperlexia is coupled with an intense fascination with letters or numbers. Yet in spite of the intense preoccupation and ability with words, there are, correspondingly, significant problems in understanding verbal language. Comprehension of that which is masterfully read is often poor, and thinking is concrete and literal. There is difficulty with, and paucity of, abstract thinking. There may be some behaviors and symptoms commonly associated with autism spectrum disorders as well including echolalia (repeating rather than initiating conversation), pronoun reversals, intense need to keep routines (obsession with sameness), auditory or other sensory hypersensitivity, specific intense fears, strong auditory & visual memory, and selective listening with the appearance of suspected deafness. In this group of children these latter “autistic” traits and behaviors are only “autistic-like” however, mirroring those seen in autistic disorder itself.

But totally not autistic because “in contrast to those in Autistic Disorder, these ‘autistic-like’ symptoms fade over time as the child ‘outgrows’ his or her ‘autism’ as some parents have described that transition. I call this group Hyperlexia III.” Darold the Great wraps up his theory by telling us exactly why it’s necessary:

The purpose of this posting is to describe these different types of hyperlexia and to point out the necessity for careful differential diagnosis among them because of differing treatment and outcome implications, along with alleviating some of the unnecessary distress and worry in parents when a diagnosis of Autistic Disorder is applied prematurely and in error to some children who read early.

And this is from 2011. But drivel like this is still used to perpetuate fear of having a child with a different neurotype. Here’s an example of a Warrior Mom, PhD, nearly begging for a different diagnosis to be created for her hyperlexic child who is actually autistic.

It’s pretty clear that Type III Hyperlexics are also neurodiverse, but this points out how flawed the analysis of clinical blowhards can be, blatant bias against autism aside. Many avid autistic readers are exactly the ones who used reading as a skill to blend in and overachieve so as to be included in society and win love. We learned how to interact with people by reading fiction and reading has been shown to teach better empathy. Apparent lack of cognitive empathy has long been a poor litmus test for autism and reading can help a kid figure out how regular people interact and what they expect.

I used reading and intelligence to learn to mask autistic traits, but the problems, like anxiety and social confusion, never got addressed.

I think it’s impossible for many people to understand that a medical condition can confer both difficulties AND advantages, that a person can see their autism as both disability AND privilege. It’s part of why the whole thing is so weird: Our cognitive profiles have high peaks and some low valleys which is why it is characterized by some as “spiky.” Hard things are easy; easy things are hard.

So can some kids just be really good at reading and not be autistic? Sure thing! But probably not if there is a genuine “intense fascination with written material from a young age.” And not just the words on the pages, but a deep affinity for books as objects of comfort and refuge. I’m that chick that reads at the bar. My house is infected with random stacks of the things. Just seeing them lined up calms me and I go on vacation to famous bookstores.

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I know a young autistic boy who is minimally verbal but talking more every day because he is teaching himself to speak through reading. He loves books and flipping the pages as a stim. He already knows how to read and is only around 4. His favorite word is “books.”

I know an autistic man who takes a textbook full of algorithms to dinner with his wife.

 

One last myth to explode here: Hyperlexic autistic kids are great at “decoding” words and vocabulary but reading comprehension is poor or non-existent. FALSE

I was reading C.S. Lewis’s Prince Caspian in early second grade during class. My teacher called me up to her desk and made me read some of it out loud to her, because she wanted to see if I was really that advanced. I was terrified and thought I was in trouble. I managed to stumble through a few paragraphs when she stopped me and asked me if I could summarize what I’d just read. I couldn’t.

I couldn’t because I was trying too hard to to read aloud on the spot to think about what I was reading. I felt pressured and scrutinized (I was), so I couldn’t communicate what I understood anyway. A lot of the words were new (and British), but I was obsessed with knowing how to read everything. I pushed myself to read beyond my ability and my ability quickly caught up. I never understood why teachers and parents would freak out about me reading far above my grade level even when the material was appropriate.

I credit my verbal IQ and obsession with books with my psychological survival as an autistic person. (I credit my physical survival with being middle-class and white.) While autism made other aspects of my existence difficult, reading and learning made me surprisingly resilient and able to think my way out of despair. I would be lost to myself without the ability to read and put my frightening experiences into context, to learn about my phobias, and escape from the angst of being alive.

So just let kids read and don’t call it a damn disorder!

 

 

Why Temple Grandin bums me out

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At least I got a good seat

A week or two ago I went to Knoxville for a free opportunity to see the Grand Grandin Vizier of American autism. (Played by Clare Danes, of course. It seems obligatory to mention the award-winning TV movie about her). I had seen her lectures on YouTube and read her many contributions in books about Asperger’s and girls OR Asperger’s and employment. We have the same ideas about the types of jobs that would be nice for us to have if there were more of them.

I was so excited to get out of town for a day and find out what new things she had to tell us about ourselves. The place was packed. The overflow was 500 strong, but because I was there early I got to see her in the flesh.

By the end of the Q&A, I was livid. It took me a minute to figure out why though.

First of all, Ms. Grandin just gave the same stock presentation about “thinking in pictures” and showing her upgrades to a cattle death machine and her functional MRI pictures. Then she berated boys who are into video games as she typically does.

Nothing new.

Secondly, the Q&A was a bit haphazard and perhaps not the best format for someone with her auditory processing difficulties. As far as I can tell she has never directly or satisfactorily answered an audience question. She would mis-hear the querent and then go off on an unrelated tangent she knew more about. Adorably, one little boy, the first one, came up to the microphone and asked her if she likes bugs. He never got an answer even after he asked a second time. Perhaps they need to give her written questions from the audience beforehand.

When non-autistic Americans think of adult autism they think of Temple Grandin and that’s a problem.

But that was merely annoying and not the thing that set me off. I watched person after person go to the microphone in front of her to ask their boring questions that she never answered. Several of the querents were little boys conspicuously dressed like Young Sheldons who had good questions, only one of which I can now recall.

The very last little Sheldon came up and asked (I’m paraphrasing), “How did you deal with peer bullying?” in a professorial and exact tone that I instantly recognized. She said something like, “I was OK in elementary school, but was sent away for high school after lashing out at other students in public school to a school for troubled smart kids.”

Interesting, but not helpful.

This little Sheldon thought so as well. He said something else with a lot of vocabulary words about being into math or something in his tiny, incongruous adult voice. The audience once again laughed, good natured-ly, at way he spoke. He looked around frantically at the laughing people, and it was then my temper reared up and I got this terrifying deja vu.

While the adults in the room thought he was a treasure of a little Aspie child and very entertaining, he didn’t know why everyone in that big room was laughing at him.

I recognized his voice as my own as a child, and the reaction of the adults as one that puzzled and confused me at that age too. I gathered from his question that he was beginning to have the increased difficulties with the other kids that I experienced around age eight. I got really into 19th century adventure literature like Melville, Poe, London, and Hawthorne in the 4th grade. When I spoke I used the same archaic vocabulary and prosody as a syphilitic Nantucket whaler. Adults thought it was adorkable and precocious, but my classmates DID NOT LIKE IT AT ALL.

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Not a good look for a little girl

I wasn’t into trains, or math, or, OK I was into dinosaurs big-time, but I was very verbal and into reading is what I’m trying to say. There seems to be this expectation that Aspie boys should go into manly STEM subjects and girls, well, should shut the fuck up if we exist at all. Not one spectrum woman or girl got to ask a question, which I thought was odd considering here we had a rare opportunity to ask an autistic woman to answer questions about her life experience. Ms. Grandin has never spoken much about how being female has affected her socially or occupationally or personally.

Grandin’s experience is not typical for a person with Asperger’s or autism both in the amount of assistance she received back then and how successful she was at her job.

(TONS of autistic females were there I must point out. The organizers preferred to trot out Young Sheldons and professionals whose questions were beyond her. I think she might not be as smart as we give her credit for. Forgive my blasphemy.)

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I cried the whole drive home. It seems like the most urgent issues facing autistic people, especially females, are not being addressed in favor of turning an androgynous autistic woman, who is nothing like the vast majority of Aspies, into a national mascot for our community. When non-autistic Americans think of adult autism they think of Temple Grandin and that’s a problem.

Temple Grandin does not have Asperger’s Syndrome. She is on a different part of the spectrum and had speech and intellectual delays which put her out of the running for Aspie. These delays also led to her being identified and helped rather early. Apparently there were still schools for poor farm kids to go to who were smart and unruly. Not so now.

Not all of us “think in pictures.” Some of us think in words and patterns.

Grandin’s experience is not typical for a person with Asperger’s or autism both in the amount of assistance she received back then and how successful she was at her job. Her symptoms were more severe and led to her being identified when someone with no speech delay or learning disabilities would be tragically missed. I’m glad she got help and was able to make it so cattle are calmer when being led into mechanized death, but her story gives the impression that autistic people are generally being identified in time and getting proper interventions, AND WE ARE NOT.

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Yes

Nearly everyone with Asperger’s from her generation, and a great deal of other autistics besides, were never identified or accommodated so that they could be successful. There are entire lost generations of failed and misdiagnosed autistics who still desperately need help.

There’s also the fact that if you are an autistic person with great verbal talent, you are kind of screwed. As I have explained, I’m not particularly high-functioning in my day-to-day, but I am articulate, intellectual, and able-bodied. I need some temporary disability benefits, but will never receive any help because of how I present as being more capable than I am.

In fact, I convinced myself for years that I couldn’t be autistic because I could understand humor and sarcasm and metaphor.  Turns out you can have a brilliant sense of humor and not be literal all the time and also have great difficulty with autistic symptoms. Reading (particularly hyperlexia) goes a long way to overcoming these deficits and many female and male Aspies are missed because we are so verbally talented. Reading helps us figure out subtext in some situations where it would be harder for us and allows us to learn better cognitive empathy and conversational skills than some others on the spectrum who have different talents.

Not all of us “think in pictures.” Some of us think in word patterns. Educators and clinicians would do us all a favor to learn this.