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#162384 - 07/17/13 09:09 AM Hyperlexia
josiejo Offline
Junior Member

Registered: 01/07/08
Posts: 15
Did anyone else see this recent blog post?
scientific american http://blogs.scientificamerican.com/mind...stein-syndrome/

Type 3 describes my DS very well. I'd be interested in others' thoughts.

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#162388 - 07/17/13 09:45 AM Re: Hyperlexia [Re: josiejo]
amylou Offline
Member

Registered: 01/01/10
Posts: 202
Thanks so much for sharing this. My dd is now 13.5yo, and hyperlexia was a consideration when she was younger. She had an intense interest in reading from a very early age and had it mastered by about 25 months old. She also had some personality quirks which could make one wonder about autism. We had one friend who tried to stage an intervention to make us get dd evaluated for autism when she was 2yo. We didn't agree, and since our pediatrician sided with us, we blew off the friend (Awkward!!). But we were told back then that hyperlexia=autism so I am so glad to see they are now distinguishing different types of hyperlexia, some without autism, because "hyperlexic" is a great description of my book-obsessed dd when she was 2yo.

Dd now has a lovely, outgoing personality and no one tells us she's autistic any more. She is still an obsessive and lightening fast reader - books are a complete joy in her life (except when asked to analyze one to death by an English teacher). I am sooo glad we never let anyone try to diagnose her love of books as a disorder....

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#162391 - 07/17/13 10:08 AM Re: Hyperlexia [Re: josiejo]
maisey Offline
Junior Member

Registered: 03/26/13
Posts: 28
Hi. This is only my second post. I have been dealing with this for 2+ year. You can go read my first post to get an idea of my 5 year old. One month ago my son had the VB - map from a very good BCBA. I needed help in the area of avoidance issues when age appropriate demands were being placed upon him. He showed reading and comprehension at the middle of 3rd.grade levels. I ended up only needing 25 hours of VB to address avoidance issues to help him when he goes to mainstream kindy. This is a child who the school district tried to place in a self contained class of only 5 nonverbal autistic children. 2 years later the talk is all about how to keep him challenged in K and gifted testing once settled into school year.

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#162394 - 07/17/13 10:54 AM Re: Hyperlexia [Re: josiejo]
josiejo Offline
Junior Member

Registered: 01/07/08
Posts: 15
Thanks for the responses - I had never heard the term until I read the blog last week. When my son (now 10) was 4 our pediatrician suggested we make an appt with a psychologist. The psychologist didn't diagnose anything specifically, for which I'm thankful since most of the behavioral/social challenges resolved themselves. But. I know that ASD had been suspected and it has continued to be hinted at by some who know him. He read early (2.5 - 3) and with good comprehension (probably at about a 3rd grade level by kindergarten, though he wasn't really interested in the stories (fiction) that were written for his reading level - they were all about social dynamics of mid-elementary school. He was much happier with nonfiction until he was about 7 or 8 yrs old. He's still not the most socially adept kid in the world and likely will never be, but he has friends now and likes to be around other kids. It just took him until about first or second grade for his desire fror friends to kick in.
I do wonder how many early readers who are "just" very gifted kids and who have some degree of social awkwardness (especially as little kids because they just aren't interested in what their same-age peers are interested in) are being diagnosed (erroneously) as on the spectrum. I know there are certainly early readers who have other issues that legitamately place them on the spectrum, but there was a siginficant amount of worry generated for us.

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#162399 - 07/17/13 12:23 PM Re: Hyperlexia [Re: josiejo]
HowlerKarma Offline
Member

Registered: 02/05/11
Posts: 4570
Yes, us as well-- though anyone who observed DD when she wasn't nervous immediately discarded the notion within seconds.

It was just so clear that she was NOT on the spectrum, in spite of many, many, MANY little indicators in common. She had astonishing sensory sensitivity, toe-walked VERY late, didn't speak much until she was about 3 (and even then not much in front of adult strangers), had immersive/obsessive interests, was 'stubborn' and potentially sensory-seeking with her resistance to discipine, etc.

She had reading-readiness indicators at a really early age-- probably about 18 months? But she wasn't autodidactic, so it didn't happen until we specifically explained how to decode when she was about 4.5 or so. Still, I'd categorically call her hyperlexic given how fast she took off and never looked back-- and given her apparent obsession with literature of all kinds. We (truly) have had to the put the brakes on her reading so that she will attend to her other basic needs. Many times, in fact.
_________________________
Schrödinger's cat walks into a bar. And doesn't.

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#162400 - 07/17/13 12:24 PM Re: Hyperlexia [Re: josiejo]
DeeDee Offline
Member

Registered: 04/16/10
Posts: 2142
According to our family's professionals, a true hyperlexic doesn't comprehend-- they process text almost compulsively, and have a great sense of symbol-to-sound, but can't tell you what the meaning is. This should distinguish an early (or very early) reader from a hyperlexic.

It is also possible to be a very early, gifted reader (=not hyperlexic) and yet autistic (there's one in my family).

The types given in that blog post seems loose to me, and more motivated by "exonerating" possible autistics from the diagnosis than by state of the art diagnostic practices.

Our family's experience is to beware of people saying "he can't be autistic, he's just gifted," because that statement often masks real and treatable issues.

YMMV,
DeeDee

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#162401 - 07/17/13 12:39 PM Re: Hyperlexia [Re: DeeDee]
polarbear Offline
Member

Registered: 09/29/11
Posts: 2465
Originally Posted By: DeeDee
According to our family's professionals, a true hyperlexic doesn't comprehend-- they process text almost compulsively, and have a great sense of symbol-to-sound, but can't tell you what the meaning is. This should distinguish an early (or very early) reader from a hyperlexic.


That's my understanding of the true definition of hyperlexic too - and ita with the remainder of DeeDee's post too smile

polarbear

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#162403 - 07/17/13 01:35 PM Re: Hyperlexia [Re: josiejo]
HowlerKarma Offline
Member

Registered: 02/05/11
Posts: 4570
Ahhhh-- I did not know that. Thanks, DeeDee; I just learned something that had always puzzled me.
_________________________
Schrödinger's cat walks into a bar. And doesn't.

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#162404 - 07/17/13 01:41 PM Re: Hyperlexia [Re: josiejo]
rhp Offline
New Member

Registered: 07/17/13
Posts: 1
Our son was reading early in his second year and sounds exactly like the "hyperlexia III" in this article - including being very affectionate and attention-seeking. But he also scores well into the autism range on multiple autism diagnostic assessments, with two different diagnostic teams saying he has "clear," though not severe, autism.

Needless to say, during the diagnostic process we took a lot of interest in the academic paper that Dr. Treffert wrote, which his blog post summarizes.

Here are some of my current thoughts.

First, the "true" meaning of Dr. Treffert's article may have to do with competing ideas around the definition of autism itself. Recent research seems to support the idea that the "autism spectrum" is really a human spectrum which shades into average with no bright line (that is, the distribution of "autistic traits" is not bimodal). There was also a recent study of "optimal outcome" - that some children with autistic traits don't turn out to be meaningfully disabled when they are older.

Autism appears to be more like IQ, which comes in degrees, than it is like a syndrome that one has or does not have.

Dr. Treffert's article seems to imply that autism is more of a bright-line thing, rather than a set of normally-distributed dimensional traits. He seems to interpret "optimal outcome" as "never really had autism" rather than "coped well with autism."

But not all experts - or even the majority - seem to accept this premise. I don't think the two highly-qualified diagnostic teams who assessed our son necessarily knew what he meant when he suggested getting experts to distinguish autistic-like from autistic. Their approach was more that if it quacks like a duck, it is a duck.

Based on the paper, when he says kids turned out to be fine, there's no real way to tell whether they turned out to be completely typical on autistic traits (distributed around the 50th percentile) or whether they just moved from the 99th percentile (which is about where these traits become diagnosable as autism) to say the 97th percentile.

If you think of autism as a normally distributed trait, then a child might move from 99th percentile (diagnosable) to 97th (still a little different, but not meeting diagnostic criteria) over time. Does this mean they never had autism in any sense? Does it mean autism-related information and interventions no longer apply in any way?

In the paper this scientific american post is based on, Dr. Treffert actually says that the hyperlexia III kids should receive the same kind of help as kids with autism, while waiting to see if the autism-like troubles go away. So his distinction between kinds of hyperlexia doesn't seem actionable, for now. It doesn't change what he suggests one do with a preschooler who has autistic traits.

I also discovered a number of experts calling it a "myth" that autistic children cannot be affectionate... while Dr. Treffert suggests that affectionate tendencies may be the way to distinguish hyperlexia II and III (autism vs. not). Again, the paper seems to relate to a different take on the definition of autism itself.

The statistical power of a study of "hyperlexia III" would be much stronger if it looked at dimensional measures rather than simply autism-or-not-autism. Though this anecdote-and-case-study-based paper is interesting, it is really only a hint at a study worth doing, not a study in itself. A full study should measure autistic traits dimensionally at say age of diagnosis and then some years later.

One also has to remember that intelligence, and early reading, are powerful coping tools for an autistic person. In the words of Hans Asperger, "Normal children acquire the necessary social habits without being consciously aware of them, they learn instinctively. It is these instinctive relations that are disturbed in autistic children. Social adaptation has to proceed via the intellect."

When relying on the intellect, the power of the intellect matters. An autistic child who is able to read has a huge leg up, because they can communicate and acquire knowledge despite likely difficulty with verbal language.

Writing is a much more autism-friendly language format than conversation and gives an autistic child an accommodating way to learn language - we've seen this with our son. A smart, early-reading child with the same degree of autism as an average-IQ non-reading child may have far fewer visible problems.

(To be clear, this is just my speculation, but I have read at least some research that traits such as affectionateness and learning to read improve prognosis and also improve responsiveness to intervention.)

The effective severity of autism - degree of disability - has a lot to do with traits other than autism itself. Intelligence or other compensating strengths, for example.

When I was a child I was also an early reader (age 2), just like my son, and I am a perfectly happy and successful adult who would never claim disability. However, I have to admit that I have never really had close friends and struggled in my youth because of it, and that reading about autism (of the HFA/Aspie variety) is like reading about my own childhood. Moreover on assessments such as Simon Baron-Cohen's (systemizing, reading the mind in the eyes, cognitive empathy) I score at the "HFA adult" average. So there are measurable autistic traits here, quite possibly diagnosable, but I'm also just fine. Those things are not mutually exclusive.

I think it's possible for a kid to be just fine in all important senses, but still need some extra help paying attention to and relating to peers. Autism is not a yes-or-no question where kids are either badly disabled or not.

Even a person with almost-autism (say 95th percentile on autistic-like traits) could probably stand some extra tutoring in the area of peer interaction, just as a kid on the 95th percentile of trouble with reading could probably use some extra tutoring on reading.

Did I turn out fine without a diagnosis of autism? Sure. Would I have benefited from some of the extra help our son is getting? I really think so, that's why we're getting it for him.

For purposes of qualifying for accommodations or disability payments, society wants to put people in the "broken" or "not broken" buckets, and some professionals may still want to define autism as "disabled enough to fail at daily living."

But for purposes of understanding ourselves and our children, and for research purposes, it's much more useful to recognize shades of gray - and that understanding of autistic traits may tell us useful things, even when they are not disabling.

"Twice exceptional" people - autism paired with visual, analytical, or verbal talents - may in fact have a kind of superpower. Their other talents can compensate for the autism, while the autism gives them advantages such as intense focus and independent thinking.

If we realize that autism is dimensional, then we won't think it's such a big deal what side of the diagnostic line they are on. Think about IQ; nothing magic happens when go from 71 IQ to 69, or 129 IQ to 131. There's not a bright line there.

Anyway. I think the best way to understand Dr. Treffert's post is to think of the three types of hyperlexia as points on a spectrum. I'm sure you can find people who fall everywhere in between those points.

Sorry for a long post, I have just put a lot of thought into Dr. Treffert's paper.

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#162407 - 07/17/13 01:55 PM Re: Hyperlexia [Re: josiejo]
22B Offline
Member

Registered: 02/10/13
Posts: 1228
This definitely fits our DS7. He taught himself to read by age 2.75, but had virtually no speech until age 3.5, when he blossomed into full sentences. His behavior was highly `atypical'. For a while we were taking a fair bit of heat from pediatricians, and anyone else with an opinion, to submit him for Autism evaluation.

We refused.

We did a lot of reading, and knew about Hyperlexia (which didn't seem to fit because he seemed to comprehend) and Einstein Syndrome (which fit perfectly).

We were warned that if you miss the window for early treatment, you could have permanently missed the opportunity the `treat' some aspects of your child's `autism'. But we had the opposite fear, that if we submitted him for evaluation, (mis)diagnosis, and `treatment', our son could be damaged by the trauma of being subjected to intense but unneeded `treatment', as well as the stigma and prejudice from the (mis)diagnosis, and a label that could never be removed.

Once he was talking fluently, the suspicions of `autism' faded away. His behavior was still pretty wild (though he's mellowed now). He is thoughtful and empathic, though socially awkward. He is exceptionally good at mathematics, though not an avid reader, preferring non-fiction to fiction.

It is late talking, rather than early reading, that really bring on suspicions of `autism'. But DSM-5 no longer has delayed speech as an indicator of Autism, so maybe delayed speech won't trigger such suspicions so much in the future.

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