Hyperlexia

Discuss getting a diagnosis, educational help & electronic devices and apps for autism.

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hyperlexia awareness
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Hyperlexia

Postby hyperlexia awareness » Wed Jul 15, 2015 12:11 am

Hi, my name is Bernice La Porta. I am the co-creator of www.hyperlexia3.com and I'm hoping that you will take the time to look it over. In case you don't know, Hyperlexia is when a child teaches themselves to read before the age of five, sometimes has delays in verbal and receptive skills and may sometimes have autism their whole lives while others may not. This group, HL3,seem to "outgrow" the autistic characteristics, leading people to believe it isn't actually autism in those children.
However, the reason I'm writing here is because I am trying to spread the word, not only about HL3, but about all three types of HL. Hyperlexic children learn language through reading and they should not simply be placed on the never ending spectrum. We are fighting for HL to be a separate diagnosis, like dyslexia, which is still on the spectrum, but can be addressed in a more specific way for the child. I'm hoping that with everyone's help, we can see a change for these children. I can't tell you how many people have never heard of hyperlexia, never mind what it is actually is. This hinders these children's abilities to grow because schools aren't educated on it. Please help me help other families so they don't have to go through what I have and am still going through with my son. Thank you for your time. And if this sounds like your child and you need information, please contact me. :)
Bernice La Porta
www.hyperlexia3.com

Winnie
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Re: Hyperlexia

Postby Winnie » Wed Jul 15, 2015 10:51 am

Hi Bernice, welcome to the forum.

I was on a hyperlexia listserv 15 years ago after my son was diagnosed with autism, as he was obsessed with letters, numbers, shapes, and reading sight words early on. As with yours, the mission of the list administrator and most of the parents there was to have hyperlexia deemed a stand-alone diagnostic category. I eventually left the list due to the militant stance of these parents which focused on proving their children were not "one of those" kids with autism. Their position seemed a lot less knowledgeable about hyperlexia than it did ignorant about autism.

At the time, Kupperman, Camarata, and Sowell were often referred to as experts on the topic. However, I never did understand what special instructional methods were required for children with hyperlexia that would be different from those employed with other children presenting with similar language and social challenges.

Could you specify what you are "going through" in regard to a lack of services and what specialized instruction would be hyperlexia-specific? Just wondering what has changed in 15 years.

What I did notice on that list were a number of older hyperlexic children whose academic and social struggles increased as they progressed into upper elementary grades. The academic shift from "learn to read" to "read to learn," along with the increasing abstractness of the reading material, brought very noticeable comprehension challenges and necessary accommodations. This seemed to diminish any advantage of early reading.

Has anyone followed these children longitudinally? Or studied the specialized hyperlexia instruction you feel is needed?
Winnie
"Make it a powerful memory, the happiest you can remember."

BigLou
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Re: Hyperlexia

Postby BigLou » Wed Jul 15, 2015 11:07 am

Wow I was just doing some research and thought my child really fit this description. He is four years old and has been reading since the age of 3 with no help from us. Actually I tried to start teaching him using a program (Learn to read in 100 easy lessons) His attention was not there but he would always answer correctly. Then after about 4 lessons we went to pick him from day care one day when his teacher told us he enjoys reading when others are napping. She also said she heard him attempting to sound out more difficult words. Im really interested in whatever information you may have.

Santosg
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Re: Hyperlexia

Postby Santosg » Wed Jul 15, 2015 7:28 pm

Hi Bernice,

My son is hyperlexic. He'll be turning 3 soon. He taught himself to read at an early age but word recognition does not neccessarily translate into higher level comprehension as was pointed out by Winnie.

In regard to the classification that your website makes on autism, I think that Hyperlexia III is really just a gross misunderstanding of autism. You basically want to distinguish these children as distinct from other autistic children because: " Unlike children with ASD, however, they are often very outgoing and affectionate with family, even though reserved and distant with peers and would-be playmates. They do make eye contact and can be very interactive with persons close to them. " Basically you want to reinforce a stereotype of the typical autistic person as someone who is incapable of showing interest, affection, or bonding with family members. This is absolutely not true. Many autistic children are very able to show affection and do it with members of their family.

Even by your own definition, those categorized as Hyperlexia III still display : ".. unusual sensory sensitivity, echolalia, pronoun reversals, intense need for sameness and resistance to change, specific fears or phobias, have lining/stacking rituals, and/or strong visual and auditory memory. "

Now, if I'm being totally honest, I think the underlying need/motivation for all of these distinctions in a hope for a better outcome. "There may other autistic-like behaviors as well. But over time, they fade, and these children are then quite typical for their age. The prognosis for these children is excellent as they outgrow the “autism” they never had."

Essentially, you state that these children show all the signs of autism but don't have it. This is logically incoherent. It is also completely unhelpful. I think it is a way to shield people from accepting that their child has autism. 'He's not autistic, you see, he's hyperlexic III and he'll be perfectly alright in a few years.' I agree that reading is an indispensable way to help these children grow and develop their language skills. Hyperlexia is a benefit but it is also testament, particularly with children that are delayed in language, to underlying deficits.

By 2 and a half I could spell words out to my son and he'd tell me what the word was. But that by itself has not brought language or normal communication. I had a discussion with a pediatric neurologist who told me of a case of two Yale professors who came to see him. Their son was hyperlexic. He would read Shakespearean plays with ease. The doctor took out a children's book, had the boy read it, and then asked him a few simple questions on the story. He was unable to explain even the most obvious details of the story.

I think it is better to accept that in all likelihood these hyperlexic III children are simply autistic children with hyperlexia. As to outcomes that depends on many variables including early and intensive intervention. Sitting back, refusing services such as ABA, and assuring yourself that it can't be autism won't help anyone, particularly your child.

hyperlexia awareness
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Re: Hyperlexia

Postby hyperlexia awareness » Wed Jul 15, 2015 7:52 pm

Hello to both of you and thanks for inquiring. The reason I started this website was not to alienate or dissassociate myself from the autisitic community. It's not a matter of "if my son is autisic" it's a matter of my son needs to use his reading to learn how to speak. My son is hyperlexic, but on his IEP it just says autistic. THe problem with this is that not all autistic children learn through reading. HL children do. So it's not a matter of HL 1, 2 or 3. It's a matter of there are a group of children, who teach themselves to read, who comprehend what they are reading, just not the highest level that they are able to read. They also "outgrow" many of the characteristics that at first put them on the spectrum. I don't care about the autism diagnosis, but I do care that the medical community is not recognizing my son's hyperlexia.

When my son was 2, he could not repeat or understand "open the door" even though we would show him pictures and demonstrate it for him. Since he was reading, we decided to put a word strip next to the door and write "open the door." From that point on, he read it and said it. When my son doesn't understand something, he actually needs to read it, not just see it, to totally comprehend that. Not all autistic children are like this. My son, and other HL children, if they are HL, use their reading skills to learn. Not just visual, but reading. My son's school does not recognize the HL as important because many people, like here, don't believe it's a separate piece. People can have Asperger's, and OCD, dyslexia and so on fall on the spectrum, so why can't I get the diagnosis of HL so that my son is educated in the correct way.

It's not about separating myself from the autistic community. It's about getting my son and other HL children the "correct" help they need. If I put a book in front of a 2 year old child with autism, they most likely will not just start reading it and they aren't going to learn language that way. They will learn through visual means like pictures. My son learns from reading.

When I found Dr. Treffert, it wasn't about separating the three types, it was about finally understanding my son's problem. Although I had started to figure out ow to help him, it wasn't until I knew what HL was that I could really get the help he needed.

There was one point where I took all the book away. This is wrong. He needed the books. He needed the words.

So again I ask you, why shouldn't I be able to get a diagnosis of ASD WITH Hyperlexia so that my son gets the proper help??

hyperlexia awareness
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Re: Hyperlexia

Postby hyperlexia awareness » Wed Jul 15, 2015 7:57 pm

See, my son couldn't recite (repeat) any books. He was reading them and then translating them into the spoken language. HL 3 kids also do not have their language explosion until after 4. My son took off between 4 and 5. So again, even if we leave my son on the spectrum, that is fine. But the HL has to be addressed. For him, that's how he learns. Sometimes HL 2 children do not benefit as much from the reading, however, it still helps. My website is simply to help people understand what their child may have. It isn't fair for my son and other kids like my son not to have a fair diagnosis. So leave it on the spectrum, that's fine. But my son deserves to have the HL on there too.

hyperlexia awareness
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Re: Hyperlexia

Postby hyperlexia awareness » Wed Jul 15, 2015 8:00 pm

I also don't know where you think me saying that there are three types is telling people not to help their child. On the contrary, the whole point of the website is saying that HL should be recognized. Kupperman does not address the three types. She simply tells us how to teach the HL children. The problem is, some HL 2 children will not learn as effectively as HL3 children do with the reading.

Santosg
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Re: Hyperlexia

Postby Santosg » Wed Jul 15, 2015 9:30 pm

I now understand your point in a much clearer way. I did not say that were not encouraging children to help their child. I felt that you were putting too much emphasis on making hyperlexia distinct from autism. To quote again: "The prognosis for these children is excellent as they outgrow the “autism” they never had." Autism is a cluster of symptoms. You can certainly outgrow autism but that does not mean you never 'had it.' Either someone has a language delay or they don't. Equally, either someone has autism or they don't. But that does not mean it is a fixed situation without hope of improvement or remedy. Saying someone can outgrow autism makes sense. Saying someone can outgrow something and at the same time never have it makes no sense. I hope you see what specifically I find wrong, logically, with the statement.


There are two elements of your description that I found questionable. The first relates the description of HL3 as distinct by virtue of their ability to show affection for close family. Again, there are many autistic children that are non-verbal and highly affectionate. I don't doubt there are also children Aspergers who are hyperlexic but not at all affectionate as well as ones that are. In a sense it is personal to me, as I can remember a neighbor basically stating something like my son must not give a darn about anyone around him. This is not true and based on a very ugly stereotype of autistic people that is far too common.

The second issue is not really something that I found problematic, per se, but I see it from a different perspective. Children that are hyperlexic typically have average to above average IQs. Many of the positive outcomes that emerge from the hyperlexic cohort, in my mind, relate directly to their intelligence. They are able to learn how to operate in the world along neurotypical lines--and become neurotypical (or close to it)--because of having a higher intelligence that makes them better and faster learners. In this sense, hyperlexia is an indication of an underlying faculty as opposed to the 'cause' of their improved outcomes.

I would recommend putting a very strong emphasis on how different styles of learning are critical for distinct types of autism. I entirely agree with this approach. As I already stated my son is hyperlexic and reading has been something that he can both do naturally and has helped with articulation and labeling when trying to elicit spoken language.

Knowing more closely what you are trying to accomplish I really see its value. I think it might be worth revising the website slightly and focusing on the distinct needs of hyperlexics. As you stated, most interventions are based on visual cues and not words. There should be an equal recognition for 'word based' learners.

I think this is an important project and hope you keep it going.

Winnie
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Re: Hyperlexia

Postby Winnie » Wed Jul 15, 2015 9:43 pm

hyperlexia awareness wrote:There was one point where I took all the book away. This is wrong. He needed the books. He needed the words.

So again I ask you, why shouldn't I be able to get a diagnosis of ASD WITH Hyperlexia so that my son gets the proper help??


I think part of the difficulty you are having may be related to eligibility determination for an IEP. As per IDEA, a child must be found eligible under one of the 14 disability categories:

http://www.parentcenterhub.org/repository/categories/

Not a perfect system, but these categories are broad (rather than specific, like hyperlexia III). And FWIW, eligibility under the autism category is not the same as a medical diagnosis (google educational determination vs medical diagnosis).

Now, once your child is eligible for services under one of these categories, you, along with the IEP team, develop an IEP. It is at this point you individualize his education by writing in goals, related services, supplementary aids, program modifications, and accommodations.

So what, specifically, in terms of "proper help" (related services, supplementary aids, program modifications, and accommodations) would you like for him to receive? Maybe we can brainstorm some suggestions to help you write these into his IEP. Things like access to books, a written schedule, and written instructions certainly seem reasonable and should be easy to include.
Winnie
"Make it a powerful memory, the happiest you can remember."

hyperlexia awareness
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Re: Hyperlexia

Postby hyperlexia awareness » Wed Jul 15, 2015 11:36 pm

Thanks Winnie, I do appreciate the help. I have worked with the team to make sure they are doing right by him. The problem is, with an HL child, people don't know about the reading being so important. He needs things written for him sometimes to fully get something. Now, I'm not saying that all HL kids are alike. My guy does not have the sensory problems but he did have the echolaia for awhile but has long since stopped. HL, and based on research, more specifically HL3 kids follow a pattern. Many have receptive/expressive delays. They teach themselves to read before five, most of the time many of them by 2 and 3 with basic comprehension of what they are reading, they are late potty trainers,usually around three and four. They can spell and understand words years ahead of their age. They have a language explosion between four and five. THey become more social as language develops. Schools need to understand that. Now, I understand not all HL children will follow the exact path, but isn't that all issues?

If this was a physical ailment, like MS, some people will be lucky and live a long, healthy life. Others will get worse much more quickly and no one knows why. Some will respond to medicine and others won't. The same applies here. But just because you have people who won't respond to MS treatment doesn't mean you take away the diagnosis. An HL diagnosis, even if on the spectrum, will help schools to know how to address these issues. Some autistic kids will need visuals, but can't read. There are differences. Not everyone on the spectrum is the same and my son, along with other HL kids like him deserve the proper and most specific diagnosis out there.

If a teacher were to see my son's IEP without knowing about HL, what is having autism going to do for him? They need to know that he needs to read to understand. Not just visuals.

Winnie
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Re: Hyperlexia

Postby Winnie » Thu Jul 16, 2015 12:55 am

hyperlexia awareness wrote:Thanks Winnie, I do appreciate the help. I have worked with the team to make sure they are doing right by him. The problem is, with an HL child, people don't know about the reading being so important. He needs things written for him sometimes to fully get something. Now, I'm not saying that all HL kids are alike. My guy does not have the sensory problems but he did have the echolaia for awhile but has long since stopped. HL, and based on research, more specifically HL3 kids follow a pattern. Many have receptive/expressive delays. They teach themselves to read before five, most of the time many of them by 2 and 3 with basic comprehension of what they are reading, they are late potty trainers,usually around three and four. They can spell and understand words years ahead of their age. They have a language explosion between four and five. THey become more social as language develops. Schools need to understand that. Now, I understand not all HL children will follow the exact path, but isn't that all issues?
Could you provide the citations for research studies on the HL3 pattern you describe? I'm just wondering since that description/pattern wouldn't be uncommon in children with autism. I'm just trying to grasp the distinction you are describing.

hyperlexia awareness wrote:An HL diagnosis, even if on the spectrum, will help schools to know how to address these issues. Some autistic kids will need visuals, but can't read. There are differences. Not everyone on the spectrum is the same and my son, along with other HL kids like him deserve the proper and most specific diagnosis out there.

If a teacher were to see my son's IEP without knowing about HL, what is having autism going to do for him? They need to know that he needs to read to understand. Not just visuals.
Well, even seeing that a child with autism is eligible under the autism category doesn't tell a teacher much. The individual needs of children, even within the same disability category, can vary significantly. And just listing a diagnosis in an IEP doesn't mean the staff will know what to do with it.

But if you would like for his early reading to be described in his IEP, you (as an IEP team member) can contribute to this information to the Present Levels of Performance section (also known as PLAAFP, PLP, or PLOP). It can read as "(Child) has been diagnosed by (name/title of diagnosing professional) with hyperlexia." And then include a few details about how this impacts his instruction/education. Your observations can also be included in the PLP ("parent reports . . . ").

Along that line of thinking -- who diagnosed your son with Hyperlexia III? What are his scores in reading comprehension? Language comprehension? I'm wondering -- since the written word is a code for language, reading comprehension scores would probably not exceed language comprehension scores, even for a child who can decode more easily than his peers. Also -- the terms "language" and "speech" are often used interchangeably, but these are not the same.

I think in the educational planning process that considering his reading comprehension compared to his decoding ability, as well as his language comprehension, would be really important, probably more important than a specific label. Santos made a lot of good points about comprehension in his posts.

What specific related services, modifications, accommodations, etc, did you and the IEP team write into his IEP to address hyperlexia? If you want to modify his IEP at any point, you can call a meeting to do so (you do not have to wait until next year's IEP).
Winnie
"Make it a powerful memory, the happiest you can remember."

hyperlexia awareness
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Re: Hyperlexia

Postby hyperlexia awareness » Thu Jul 16, 2015 1:59 am

Labels become important when they use them narrowly. Have you ever encountered a HL child? One who taught themselves to read and then used the reading to speak?

hyperlexia awareness
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Re: Hyperlexia

Postby hyperlexia awareness » Thu Jul 16, 2015 2:19 am

All information in on my website. These are some of the ones on there:

http://eric.ed.gov/?id=ED421840
https://www.wisconsinmedicalsociety.org ... /6/281.pdf
http://www.csld.org/HyperlexiaFAQ.htm
http://ingoodhealthfdl.agnesian.com/201 ... ead-early/
http://www.amazon.com/Reading-Too-Soon- ... 0963792105

Plus I have spoken with Phyllis Kupperman who explained to me what I would and should expect to see from Frankie, like the language explosion.

The problem in this conversation lies in the fact that you don't have experience with an HL3 child. My son is HL3 and it bothers me that I have to argue and defend this to people who should be more open to the possibilities. Up until the 1960's, autism wasn't recognized as a medical condition and I'm sure there were people in my position who had to fight for their child. People seem to take offense to HL3, like we are trying to separate from autism. It's not about that. Keep it on the spectrum. But it should be labeled ASD with HL just like Aspergers and other LD's like dyslexia.

My fighting for this diagnosis has no bearing on anyone but for my son and the thousands of people out there in my position. I would never come on here and tell someone who knows their child that they are wrong and make them feel like they had to defend themselves! I would have thought that this forum would be more accepting.

Do you know that most people do not know what HL is? I mean HL by itself. How is that fair to my son?

Winnie
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Re: Hyperlexia

Postby Winnie » Thu Jul 16, 2015 2:32 am

hyperlexia awareness wrote:Labels become important when they use them narrowly. Have you ever encountered a HL child? One who taught themselves to read and then used the reading to speak?


Yes -- my son. Taught himself to read early and this seemingly led to some of his first words. One of a number past forum posts of mine on the topic:

http://www.autismweb.com/forum/viewtopic.php?p=206169#p206169

My son was just in love with shapes, letters, and numbers -- these were among his first words (and favorite objects to carry around -- puzzle piece of the week). This wasn't an area of instructional focus on our part, but it was an area of high interest for him and something motivating to use in teaching other skills. He was initially a sight-reader but later learned phonics/rules for decoding.

I think reading comprehension is difficult to determine at the single-word level -- matching a picture or object to a printed word is still sort of a matching task (lots of kids do this with logos, signs, etc, and this is how they learned the words to begin with).

Though I would expect reading comprehension to be commensurate with language comprehension (text is a code for language) -- and if a child processes visually better than auditorily (like a printed instruction), it is certainly worth exploring for communication purposes too.

Hey he won't have to spend much time studying for spelling tests in the future. Yay (a bonus)! :)



Would you mind addressing the questions I raised in my last post?
Winnie
"Make it a powerful memory, the happiest you can remember."

Winnie
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Re: Hyperlexia

Postby Winnie » Thu Jul 16, 2015 2:45 am

hyperlexia awareness wrote: My fighting for this diagnosis has no bearing on anyone but for my son and the thousands of people out there in my position. I would never come on here and tell someone who knows their child that they are wrong and make them feel like they had to defend themselves! I would have thought that this forum would be more accepting.

Do you know that most people do not know what HL is? I mean HL by itself. How is that fair to my son?

I'm trying to understand how you are being treated unfairly -- or how the lack of a stand-alone HL3 diagnosis is unfair to your son in terms of receiving appropriate educational instruction, services, and modifications. I've tried to suggest some ways you can have the district address his educational needs.

Unfortunately I'm having difficulty following your position, since you have not provided answers to relevant questions.

Even the Dr. Treffert you mentioned does not designate specialized treatment specific to HL3 (https://www.wisconsinmedicalsociety.org/professional/savant-syndrome/resources/articles/hyperlexia-reading-precociousness-or-savant-skill/):

As it turns out, even in the absence of a diagnosis of autism, “treatment” during that period of observation is the same—attention to sensory, social and behavioral symptoms of concern by formal speech and language or ABA interventions, for example, along with the “patience, love and attention” from caring and involved parents that both Sowell and I would recommend. In matters such as this, as in many other matters, love is a pretty good therapist too.

His reasons for avoiding an autism diagnosis (and evaluating for a HL diagnosis) are to prevent parental stress and pessimism:
While “autism” can be one of those causes in both delayed speech and hyperlexia, that diagnosis is sometimes applied prematurely or inappropriately in both conditions causing undo pessimism and unnecessary stress on the parents already concerned about particular behaviors.


???
Winnie
"Make it a powerful memory, the happiest you can remember."

Santosg
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Re: Hyperlexia

Postby Santosg » Thu Jul 16, 2015 8:58 am

Your stated goal is to give hyperlexia its own diagnostic label. Given that goal you should be ready and eager to answer questions about the validity and need of the development of a new medical and educational diagnosis. Hyperlexia is a strength and not a deficiency. There are children that are hyperlexic and neurotypical. As you state on your website, these children fall into the hyperlexia I cohort. In reality there are absolutely no distinctions that can be identified between hyperlexia II and hyperlexia III on your website. The only true and meaningful difference is that you assert that hyperlexia III children are affectionate and social towards family, unlike--according to you-- "true" ASD children, and will eventually outgrow the “autism they never had" (http://www.hyperlexia3.com/).

The distinctions that you make are not well founded and unsupported.


hyperlexia awareness wrote:The problem in this conversation lies in the fact that you don't have experience with an HL3 child.


Like Winnie I have a child who is hyperlexic.

hyperlexia awareness wrote: People seem to take offense to HL3, like we are trying to separate from autism. It's not about that. Keep it on the spectrum. But it should be labeled ASD with HL just like Aspergers and other LD's like dyslexia.


The only one actively trying to separate it from autism is YOU. Quite frankly I see this as your own psychological need to separate yourself from the autism label. It is clear that is really bothers you. You have stated two things on your website and on this forum: your child is HL III and that HL III children don't actually have autism. You might be able to spin the wheel and justify what you're doing but its very clear to anyone who notices that you've got a lot invested in making a very clear distinction between autism and hyperlexia. "You see, they say he's autistic but I know better. It is actually hyperlexia III. Very different." I imagine that comes up fairly regularly in your conversations.

As I stated in my previous post it is important to identify learning strategies for all children. That can be accomplished through the IEP or work with therapists.

I think it is really worth taking the time to examine your own defensiveness on this topic. You might find what I said harsh but I think it is the truth. You did not answer Winnie's questions and you just ignored any of the points that I made completely. Lastly, throwing around gross stereotypes like autistic children are not affectionate towards family is wrong, unhelpful, and serves no purpose beyond further separating your own child from the 'mass' of truly autistic children. Being in denial helps no one, particularly our children.

kulkulkan
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Re: Hyperlexia

Postby kulkulkan » Thu Jul 16, 2015 12:43 pm

All of the arbitrary diagnostic labels just means my child needs help. The real question isn't the precise label but how exactly can you help your child and this will be unique for each child given the child's strength and weaknesses. If we take all of the strengths, abilities and weaknesses in ASD or broader spectrum, one can likely come up with more than a thousand different permutations and to call one of these variations, HLIII or ASD843 is a bit nonsensical. Personally, I don't particularly care what is the diagnostic label as long as my child is getting the help that he needs.

Earlier this year, our ABA instructor goes to us "Hey, your son is hyperlexic" as he easily read a whole story that she was trying to get him to read. But he isn't - he had worked hard for a year in a Kumon reading program since he was 4 years old and he easily picked it up. He didn't teach himself how to read - we had to really encourage him to do so. Some kids struggle with reading, while others, like my son will likely struggle with comprehension (NT kids struggle with these as well). What is more practical and helpful are interventions and techniques such as Lindamood Bell's V&V (for comprehension), not more labels.

i14ng
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Re: Hyperlexia

Postby i14ng » Fri Jul 17, 2015 11:29 am

Glad to see this thread. I was an early reader and my son too, and also we meet the autism criteria. It isn't an either/or thing. But reading and intelligence are certainly a helpful strength for an autistic person.

As a kid who was labeled gifted but faced huge social challenges and misery, I'm an advocate for understanding that kids can both have social challenges, AND meet the autism criteria, AND have great strengths. Reading is one possible strength.

We emphasize my son's strengths more than his weaknesses, as he gets older especially. But we still have gotten a lot of helpful individual tutoring for him on the weaknesses, just to help him manage those. In the long run the strengths matter more, but he needs enough help with the weaknesses that they don't trip him up.

For us I think early reading is a manifestation of an anecdotal autism flavor you might call "analytical" or "intellectual" which is how Hans Asperger originally described autism ("Social adaptation has to proceed via the intellect"). This is not all autism by any means. A very different subjective account that I see a lot out there is apraxia-like (lack of voluntary motor control, extending to speech). There are also accounts such as Grandin's "thinking in pictures" and accounts that put sensory overload front-and-center. All of these are traits someone can have that somehow make it difficult to learn or use social/communication skills, but they lead to very different subjective experiences and learning styles.

To be clear, these distinctions are all anecdotal, autism research is awful and doesn't often look at this kind of stuff. That's where I agree that traits such as hyperlexia need attention - there should be a serious effort to unpack autism into some of the different underlying conditions and traits. But this has not been done for hyperlexia - in my post at http://intellectualizing.net/2013/09/24 ... liography/ I think I cover a large portion of the info on hyperlexia that's out there, and it's almost zero in the scheme of things. Very few research papers. Even autism itself, which has ten thousand times more research, is poorly-understood and has a weak basis as a diagnostic category (see http://intellectualizing.net/2013/12/17 ... omplexity/ ). There's been very little useful research that tries to unpack different learning styles and challenges within autism. A difficulty with advocating for hyperlexia is that there's just not much known about hyperlexia.

We've found it helpful to treat diagnostic categories as simply a bureaucratic hoop: the school and insurance company need to check that box to get funding. Then, forget about it and switch to measuring and thinking about the specific person. A great thing about thoughtful forms of ABA, for example, can be that it's highly individualized and in fact has nothing to do with diagnostic category - my son's ABA program would be exactly the same if he was labeled with nothing, labeled ADHD, labeled speech delayed, it just doesn't matter, because what they do is assess what he specifically needs to learn and they work on those things. An IEP should be the same way, ideally, though few of them are.

It is important to look at teaching methods. We use my son's reading to teach all the time, and subtitles on TV/movies have been huge for him I believe. Many with apraxia-flavored autism talk about how miserable ABA was for them, because they understood lessons but couldn't control their bodies to demonstrate understanding - but my son does not have that issue. We always have to look at the individual. Even within ABA there are many different teaching methods and reinforcers that can be used, and a good teacher will be adapting to the kid. Sadly there seem to be some very inflexible, lazy ABA providers out there who don't do this.

The autism diagnostic label has been confusing for the world, I think, because people take it as a unified disorder rather than as a trait or description, and thus they tend to think autistic people have more in common than they do.
(Here's a post on that: http://intellectualizing.net/2015/06/04 ... condition/ )
I don't know how many message board threads I've read where people get in a fight about what "autism" means because their personal experience of it is so different from another person's, and they don't realize how broad the autism category truly is.

A similar claim to HL3 that people sometimes make is that giftedness can make a kid autism-like but not autistic. This idea of autism-like but not autistic doesn't make sense because the only meaning of autistic is "meets the checklist in the DSM." There isn't a known "underlying" thing that results in that checklist, that you can "really" have or not. This is where Dr. Treffert is out of the mainstream; he's asserting that the DSM checklist is a sign of something deeper, and in the past people thought that and some still do, but the science doesn't back it up. Autism is the DSM checklist and the DSM checklist is autism. And nobody knows if the checklist is really "right," it's instead a pragmatic approximation of who would benefit from autism interventions. It has a pragmatic meaning, it isn't meaningless; but it isn't the whole truth either.

I do appreciate Dr. Treffert's hyperlexia typology as a set of anecdotal impressions from his long experience - a survey of some interesting points on the autism continuum. And I'm glad to have read many other parents' accounts of kids who sound a lot like my son. These impressions are very helpful.

We all have to try to figure out our kids and ourselves as best we can.
http://intellectualizing.net

Winnie
Posts: 4226
Joined: Sat Mar 18, 2006 2:48 pm

Re: Hyperlexia

Postby Winnie » Sat Jul 18, 2015 10:51 pm

Hi i14ng – very interesting post. I’ve done some reading on your blog and it is full of information and interesting insight too– I have much more to read.

i14ng wrote:We've found it helpful to treat diagnostic categories as simply a bureaucratic hoop: the school and insurance company need to check that box to get funding. Then, forget about it and switch to measuring and thinking about the specific person. A great thing about thoughtful forms of ABA, for example, can be that it's highly individualized and in fact has nothing to do with diagnostic category
I completely agree – I think this was the point Kulkukan was making as well. Eligibility under a diagnostic category is just really just an invitation to the IEP table. What matters to the child is the individualized instruction and supports that should be developed at the table, understood by the staff, and implemented appropriately. This is not necessarily easy for parents and requires continual advocacy and ongoing vigilance.

i14ng wrote:It is important to look at teaching methods. [. . .]We always have to look at the individual. Even within ABA there are many different teaching methods and reinforcers that can be used, and a good teacher will be adapting to the kid. Sadly there seem to be some very inflexible, lazy ABA providers out there who don't do this.
^That. What I cannot understand regarding the OP’s mission to make hyperlexia a stand-alone diagnosis is how this assures “proper help.” Waging war over the label is useless if the parent is unable to describe what “proper help” is and how these methods apply to their child. And as you pointed out, even securing an appropriate methodology does not assure appropriate or competent implementation.

i14ng wrote:This is where Dr. Treffert is out of the mainstream; he's asserting that the DSM checklist is a sign of something deeper, and in the past people thought that and some still do, but the science doesn't back it up.
I guess I question how helpful Dr. Treffert ‘s categories actually are on several levels. First, as Santos pointed out, he perpetuates the stereotype that children with autism do not show affection or make eye contact, which is not true. I fear that the take-away for some parents will be an expectation that their child will “outgrow autism they never had,” which as a statement about developmental trajectory, doesn’t make sense anyway. Since Dr. Treffert does not identify any specialized instruction that would result from the diagnosis, seeking a specialist to parse the hyperlexias seems rather pointless.

From your blog:
If you have a 5-year-old who reads like a 9-year-old but could use practice playing with other kids, how does it make sense to spend hours per day on reading but only 20 minutes on recess? It’s so far from appropriate, and no IEP could ever solve that.
This really speaks to an experience we had with a first-grade teacher. Because my son was able to manipulate numbers beyond a first-grade level, the teacher would assign him wildly inappropriate math worksheets in class. When he did not complete a worksheet, he was punished by sitting out of recess to complete the assignment. He needed play, social opportunities, and decompression at recess, not unnecessary 5th-grade brain teasers to be displayed on her wall at open house.

The administrative excuse was that she employed a constructivist methodology, though neither the teacher nor the admin was able to discuss constructivism knowledgeably or explain how her actions were appropriate under any circumstances for my son (or any other child). We resolved that particular issue, and also some others that arose – though the year felt like a battle from our advocacy position. I still consider that teacher and school year as damaging to his spirit and motivation.

i14ng wrote:We all have to try to figure out our kids and ourselves as best we can.
Yes, so true.
Winnie
"Make it a powerful memory, the happiest you can remember."

i14ng
Posts: 2
Joined: Fri Jul 17, 2015 10:22 am

Re: Hyperlexia

Postby i14ng » Mon Jul 27, 2015 8:58 am

Winnie, regarding your son's first-grade story, my mom often tells a story about me in first grade (though her story is over 30 years old so the autism label wasn't in the picture). The teacher would give me worksheets and I took a long, long time to complete them. She would then keep me in from recess. Mom had to explain to the teacher that I didn't like recess so I was doing the worksheets slowly on purpose - the attempted punishment was in fact a reward.
http://intellectualizing.net


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