Can we talk about hyperlexia? - Mothering Forums

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#1 of 21 Old 05-25-2007, 12:21 PM - Thread Starter
 
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Today - probably because I'm in full on procrastination mode - I'm obsessing about what is really going on with my DS. His dx is PDD-NOS, but we all know that this gives no real information. I've come back to the idea that he might be hyperlexic a few times. I also know there's some debate as to whether hyperlexia is part of the autistic spectrum disorders, stands alone as its own PDD, or is sometimes one or the other. In many ways, I don't really care - I just want to know what's going on so I can both help him best and prepare us all best for the future. Is my son hyperlexic, or are these just typical strengths of HFA?:

Starting soon after he turned 3 he began
- sight reading about 20 words
- spelling about 20 words (I can say, e.g., "F-R-O-G. What does that spell?" And he tells me the right answer.)
- wrote his name once (never again though)
- is fascinated with all things alphabet and numbers
- counts to 199

Other things about him that make him him:

He has one odd specific phobia, which is, while he LIVES for all things musical, you cannot sing a song he knows well if it's out of context and NEVER can you sing the ABC song unless it's already playing on a CD he knows well. I have taken him out of grocery stores crying his sad little eyes out (not mad, more like devastated) because another child in there happened to be singing the ABC song.

He has normal eye contact and emotion sharing, and is becoming very social the more language he develops, but he doesn't really know what to do socially to connect. He's always been very affectionate and gentle.

Really his main trouble is almost solely with communication/language. His comprehension is still pretty bad at times. He understands a lot more than he used to. Lots of times lately I see him looking at me a little embarrassed when I'm talking about him to someone else (I have to stop that! I'm so used to assuming he doesn't understand - bad mama). But sometimes I can say something so simple, like "Put this on top of the TV" and he gets upset because he doesn't know what I want him to do. He knows all those words, but can't put them together to make meaning out of it, I guess. He has mostly learned language by rote and in chunks, but in the past few months he's begun doing more and more spontaneous language.

His motor skills are on par with his age. He doesn't have excessive behavioral issues.

He flaps his arms when excited.

He eats almost nothing (this is a rigidity as opposed to a sensory issue).

Anyone with hyperlexia expertise want to give me their thoughts about hyperlexia/my son/anything along these lines?
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#2 of 21 Old 05-25-2007, 12:58 PM
 
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I'm not an expert but wanted to chime in as I've done a lot of reading on hyperlexia over the past few months. While we were going through the diagnostic stage with my son (Asperger's) my mom told me that when I was 3.5 she figured out I could read because I was reading all the road signs and billboards we'd pass (I remember obsessing about counting how many letters were on the signs too).

From what you wrote it really sounds like he could be hyperlexic. His ability to read, love of numbers, but problems with communications and social skills are hallmark signs from everything I've read. There are a lot of commonalities between hyperlexia and PDDs but I don't know how well-versed doctors are on hyperlexia.

So of course I've typed all this and it's nothing you didn't already know hehe. I just wanted to agree with you - hopefully someone else will have more concrete information to share.
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#3 of 21 Old 05-25-2007, 01:18 PM - Thread Starter
 
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Melissa, thanks! It helps to hear any opinions, even if they're no further along than my own

So do you think you're hyperlexic? Or was this giftedness?
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#4 of 21 Old 05-25-2007, 01:23 PM
 
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I think in my case the early reading was probably just a result of being gifted. I was given a full psychoeducational workup prior to starting kindergarten and my mom tells me that academically I was OK to start in 2nd grade but emotionally I was immature (yeah, I was 4 hehe) so we didn't skip any grades.
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#5 of 21 Old 05-25-2007, 01:26 PM
 
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I don't know much because it's not a factor with DS, but a friend is an expert and she pointed me to the book "when babies read" , and hyperlexia.org

I've seen the book, it gives lots of practical advice about how to turn the love of words into a strength to learn spoken language, social behavior, etc.

http://www.amazon.com/When-Babies-Re...4592918&sr=8-1

Berkeley mom of 3 and President of Tender Cargo Baby Gear
and The Nurture Center Store and Resource Center 3399 Mt Diablo Bl Lafayette CA 888-998-BABY
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#6 of 21 Old 05-25-2007, 05:13 PM
 
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Bede is hyperlexic. His first 'words' were the letters of the alphabet and their sounds, and he could read at about a 1st gr level by about 30mo.

I was an early reader but also an early talker. (I think I am on the edge of Asperger's now, def. would have been dxed it as a child)

My kids are too crazy for me to type right now but I will try to come back to this later.

Oh, his 'official dx' is autism, mild-moderate.
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#7 of 21 Old 05-25-2007, 10:44 PM
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DS1 is hyperlexic, I suspect that I am, too. DS1's dx is autism spectrum disorder and mental retardation. I wrote one of the reviews for that book on Amazon; I think it's a pretty good book.

DS1 taught himself the alphabet, numbers and about 100 sight words before he was 2...we thought his desire to learn was one of the most charming parts of his personality. We are now in the difficult position of having a child who is advanced academically but far behind in listening comprehension, emotional development and social skills. He can't go to a gifted class, he no longer needs the autism program, the special ed class helps him emotionally but not academically (the school's team is working on a special academic plan for him next year), homeschooling does not satisfy his social needs/interests. He also has severe anxiety and attention issues, but only two of his phobias remain from his toddler years (barking dogs and singing numbers).

"Isn't life a series of images that change as they repeat themselves?" - Andy Warhol
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#8 of 21 Old 05-26-2007, 12:34 AM
 
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Just the other side of it...we were told our son was hyperlexic. He wasn't. He was gifted and an early reader. He has other special needs, but it was really inaccurate to diagnose him as hyperlexic and we heard that many more times than gifted. So, tread carefully with that diagnosis.
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#9 of 21 Old 05-26-2007, 04:02 AM
 
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Originally Posted by Roar View Post
Just the other side of it...we were told our son was hyperlexic. He wasn't. He was gifted and an early reader. He has other special needs, but it was really inaccurate to diagnose him as hyperlexic and we heard that many more times than gifted. So, tread carefully with that diagnosis.
What *is* the difference, precisely? I get testy about this subject as I learned to read when I was barely 2 (among other unusual characteristics) and it bugs me to think about all the things that made me "quirky" then being pathologized now.
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#10 of 21 Old 05-26-2007, 12:30 PM - Thread Starter
 
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Originally Posted by Roar View Post
Just the other side of it...we were told our son was hyperlexic. He wasn't. He was gifted and an early reader. He has other special needs, but it was really inaccurate to diagnose him as hyperlexic and we heard that many more times than gifted. So, tread carefully with that diagnosis.
This is very interesting to me too because I'm unconvinced about just about ANYTHING people tell me concerning my son. It seems to me the differences between hyperlexia, giftedness w/quirks, and HFA with precocious reading is very tricky.
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#11 of 21 Old 05-26-2007, 06:53 PM
 
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Originally Posted by BelgianSheepDog View Post
What *is* the difference, precisely? I get testy about this subject as I learned to read when I was barely 2 (among other unusual characteristics) and it bugs me to think about all the things that made me "quirky" then being pathologized now.
The difference is supposed to be that kids with hyperlexia have real problems with comprehension and communication. That is tricky though because it isn't uncommon for some gifted readers to have a significant gap between decoding and comprehension. So, you can have the three year old who can decode Newsweek. They may be able to read it fluently but not understand any of thwa they are reading. But, that doesn't mean the kid is hyperlexic. Our son may have appeared hyperlexic because he's introverted/shy/socially awkward and could read better than he could speak. So, if asked comprehension questions as a preschooler he may well have appeared not to have comprehension problems. We can say though as he's older his decoding was greater than his comprehension but both were years beyond his chronological age.

And, yes, I'm bothered by quirks being turned into pathologies. A good book on this topic. http://www.amazon.com/Misdiagnosis-D.../dp/0910707677
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#12 of 21 Old 05-26-2007, 10:28 PM
 
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Hyperlexia

The main characteristics of hyperlexia are an above normal ability to read coupled with a below normal ability to understand spoken language. Many of the social difficulties seen in hyperlexic individuals are similar to those found in autism. Often, hyperlexic children will learn to speak only by rote memory and heavy repetition. They may also have difficulty learning the rules of language from examples or from trial and error.

Some people assert that hyperlexia is autism, whereas others assert hyperlexia is a completely different condition.

Hyperlexia Symptoms

• A precocious ability to read words far above what would be expected at a child's age
• Child may appear gifted in some areas and extremely deficient in others
• Significant difficulty in understanding verbal language
• Difficulty in socializing and interacting appropriately with people
• Abnormal and awkward social skills
• Specific or unusual fears
• Fixation with letters or numbers
• Echolalia (Repetition or echoing of a word or phrase just spoken by another person)
• Memorization of sentence structures without understanding the meaning
• An intense need to keep routines, difficulty with transitions, ritualistic behavior

Additional Symptoms:
• Normal development until 18-24 months, then regression
• Listens selectively / appears to be deaf
• Strong auditory and visual memory
• Self-stimulatory behavior (hand flapping, rocking, jumping up and down)
• Think in concrete and literal terms, difficulty with abstract concepts
• Auditory, olfactory and / or tactile sensitivity
• Difficulty answering "Wh--" questions, such as "what," "where," "who," and "why"



i displayed symptoms of this or aspergers when i was a child, i dont remember not reading and have memories from about two years old. i do remember spelling consumers distributing (my favorite catalog as a child) to my parents and flooring them as they did not know i could read. i was placed in gifted class in school. my vocabulary AND comprehension were above testing ability, and my iq was high enough for mensa. i would rather read than anything else, and have problems still to this day with social situations, anxiety, and some ocd issues. speaking can be issue as well, the words are in my head but i have such a hard time getting them out properly- stammering- pauses and searching for words
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#13 of 21 Old 05-27-2007, 09:05 PM - Thread Starter
 
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Originally Posted by dianamerrell View Post
Hyperlexia

The main characteristics of hyperlexia are an above normal ability to read coupled with a below normal ability to understand spoken language. Many of the social difficulties seen in hyperlexic individuals are similar to those found in autism. Often, hyperlexic children will learn to speak only by rote memory and heavy repetition. They may also have difficulty learning the rules of language from examples or from trial and error.

Some people assert that hyperlexia is autism, whereas others assert hyperlexia is a completely different condition.

Hyperlexia Symptoms

• A precocious ability to read words far above what would be expected at a child's age
• Child may appear gifted in some areas and extremely deficient in others
• Significant difficulty in understanding verbal language
• Difficulty in socializing and interacting appropriately with people
• Abnormal and awkward social skills
• Specific or unusual fears
• Fixation with letters or numbers
• Echolalia (Repetition or echoing of a word or phrase just spoken by another person)
• Memorization of sentence structures without understanding the meaning
• An intense need to keep routines, difficulty with transitions, ritualistic behavior

Additional Symptoms:
• Normal development until 18-24 months, then regression
• Listens selectively / appears to be deaf
• Strong auditory and visual memory
• Self-stimulatory behavior (hand flapping, rocking, jumping up and down)
• Think in concrete and literal terms, difficulty with abstract concepts
• Auditory, olfactory and / or tactile sensitivity
• Difficulty answering "Wh--" questions, such as "what," "where," "who," and "why"
I read these symptoms online and in the one book I have (Reading Too Soon). But, like with everything with my son, I just don't know what to believe. Then again, my son has every one of the inital list of symptoms, except perhaps that he is not tied to routines and his echolalia has been remediating somewhat. As for additional symptoms, he at times listens selectively, hand flaps when excited, and has difficulty answering wh- questions. But I wonder if the amount he reads (meaning, he only sight reads and spells a bunch of words that I'm guessing he memorized elsewhere - he doesn't do it phonically) is enough to call it hyperlexia...

Those of you who do have children with hyperlexia, I read that at 4 1/2-5 the language finally comes more easily and things begin to change. Was this true for your child?
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#14 of 21 Old 05-27-2007, 11:31 PM
 
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My DS hasn't been diagnosed with hyperlexia but I've read about it and for a while now have thought of him as hyperlexic. I first thought this when he was around 2 1/2 as he was not only extremely interested in anything regarding letters and numbers, but was also very gifted with it as well. Including writing the complete alphabet, knowing the sounds of all the letters, counting very well, etc.

He also has every single characteristic/symptom from the list above, even the additional ones. He will be 5 in August and over the last 6 months or so I have definitely seen a difference with his language. He's still delayed, yes, but he's definitely developing at a faster rate than previously.

His official diagnosis is autism - mild.

What I don't know, though, is if he did get this diagnosis would it benefit him any. So far all of his teachers have recognized his interest/ability with letters and numbers and they have used it to help him learn other things. I'm also happy that next year, in Kindergarten, he will be in a mixed K, 1st and 2nd grade special education class (about 10 kids total). we've spoken with the teacher who immediately recognized his academic ability and she has the freedom to group him with the 1st and/or 2nd graders in the academic lessons so he will be challenged rather than bored and not stimulated. This is great (though I haven't thought about what it will be like in the following year or two when he IS in 2nd grade and is beyond his class academically...)
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#15 of 21 Old 05-27-2007, 11:35 PM
 
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My concern about this list: How would it be possible to distinguish between a child who is autistic and gifted and a child who is autistic and hyperlexic? Is every child who is on the autistic spectrum who shows early reading skills to be considered hyperlexic?
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#16 of 21 Old 05-28-2007, 01:28 AM
 
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i am not sure about that one, i do not even know if hyperlexia is fully recognized by medical community. the symptoms do cross over eachother, and i have wondered it all dx'd cases of autism spectrum are actually that or if criteria has widened with no other name to call such symptoms. so much more research needs to be done!
i think no matter what the most important thing for the child is acceptance.:
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#17 of 21 Old 05-28-2007, 02:20 AM
 
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I've wondered about the difference too. So many of these labels seem so subjective to me and like maybe they aren't separate entities. With that list, I don't really see anything to indicate how "hyperlexia" would be different and unique from a child considered to be on the autism spectrum who happened to be reading early.

DD is an early reader and I've been surprised to encounter so-called therapists that consider her reading ability to be a bad thing. It's actually been a great help; our speech therapist has used DD's interest in words and reading to design games that have boosted her language ability and increased her social interest.
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#18 of 21 Old 05-28-2007, 02:40 AM
 
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This has been an interesting discussion for me to follow...when we first decided there was something not quite right with DD, the closest description I could find onlilne was hyperlexia...but now it's clear it's not that. She is just advanced with letters and words - but she's not reading independently yet at 3.5 (although she can read *some* words which seems to be ahead of most of her peers).

Anyway, it was interesting to see your list of your son's delays and that he was dx'd PDD. My DD has more delays in more areas but she is NOT PDD...I wonder if that's just a difference in different states? Her "official" diagnosis is an auditory processing disorder, sensory integration disorder and "at-risk" for ADHD. Anyway, she is clearly VERY interested in letter and numbers and books...but not hyperlexic.

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Originally Posted by krissi View Post
. It's actually been a great help; our speech therapist has used DD's interest in words and reading to design games that have boosted her language ability and increased her social interest.
I totally agree with this. My DD's teacher at her special needs preschool uses the written word *all* the time with her to motivate her. She made a point of mentioning it to me. So if your son is *loving* words, whether he is hyperlexic or not, I would definitely make sure the folks who are working with him use writing to help him learn language....

I'll keep reading to see what others say about hyperlexia....
peace,
robyn
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#19 of 21 Old 05-28-2007, 10:39 AM - Thread Starter
 
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Originally Posted by hippymomma69 View Post

Anyway, it was interesting to see your list of your son's delays and that he was dx'd PDD. My DD has more delays in more areas but she is NOT PDD...I wonder if that's just a difference in different states? Her "official" diagnosis is an auditory processing disorder, sensory integration disorder and "at-risk" for ADHD. Anyway, she is clearly VERY interested in letter and numbers and books...but not hyperlexic.
Hi Robyn, I'm always interested to hear about your daughter for similar reasons. I believe it's also possible that my son has an auditory processing disorder and this is really his main challenge. Like I keep saying, I'm just so completely unconvinced of anything concerning a dx for him. Where I live (and have lived - I moved from OR to MA, and now we're going back to OR) PDDs are definitely the dx du jour, and PDD-NOS basically means he has developmental delays in more than one area (i.e., communication and social, although it seems unlikely to me that he'd be delayed in communication and then on track in social), and he has some other autistic-like symptoms, but we don't know what it is. I'll accept that because it's just the truth, but I'm wary of the tremendous width of the autistic spectrum, and I think many many practitioners will look for and then find evidence of what they're most familiar with (i.e., ASDs) and pronounce it as such rather than think outside the proverbial box.

I too am uncertain about the cross-overs between hyperlexia and ASD.
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#20 of 21 Old 05-28-2007, 11:47 AM
 
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I'm wary of the tremendous width of the autistic spectrum, and I think many many practitioners will look for and then find evidence of what they're most familiar with (i.e., ASDs) and pronounce it as such rather than think outside the proverbial box.
This is definitely true and I'm starting to think this way also. As I've posted before, DD was initially diagnosed with ASD but I now doubt the diagnosis. Her delays are in language comprehension and peer interaction, but I really think the latter is the consequence of the former. I don't see how she could possibly have normal peer interaction with the expressive and receptive language impairments she has, especially since there are motor problems too so she can't even do something like go out and play catch with another child (and I think she would want to if she could).

But that is enough to meet the criteria for PDD nonetheless. Because the criteria are so broad, you can probably diagnose any child with any language processing issue as having PDD, and then that prevents looking at the real issue sometimes. I am starting to just accept that maybe there just isn't an appropriate label out there for every child.
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#21 of 21 Old 07-05-2014, 11:15 AM
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(oops - posted this without realizing the thread was really old. sorry about that. leaving it in case it's useful to someone someday.)

My suggestion is to let needed services drive the diagnosis rather than vice versa. If you feel speech is the main issue focus on getting some help related to that.

Our primary concern was not knowing how to interact with other kids (though our son was interested/affectionate with adults) so we went with autism dx for that and found a combination BCBA / SLP who has been very helpful.

Here is my blog post on hyperlexia resources: http://intellectualizing.net/2013/09...-bibliography/

None of these labels will tell you anything about your child, they will just give you services and maybe help find stories about similar kids.

autism as currently diagnosed is a trait not a whole syndrome; the underlying "condition" could just be a very analytical mind or a variety of syndromes which affect social skills, some of which are pretty scary. All autism means in practice as currently diagnosed is "had a social delay as a young child" - it isn't even a given that the social delay persists when older.

hyperlexia doesn't even have an official definition, but what's in common between ways various books and papers have defined it is "precocious decoding." Whether there's accompanying autism or comprehension delay or whatever is all undefined/variable. Just have to look at how the paper or book you're reading says they define it.

So all these labels say about a kid is the tautological thing. autism is defined as social delay and it tells you a kid was at one point socially delayed. hyperlexia is defined as precocious decoding and it tells you there was precocious decoding. everything else is variable. Have to do an individual assessment.

Last edited by rhp; 07-05-2014 at 03:00 PM. Reason: realized thread was ancient, added apology.
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