Hyperlexia

[LavenderPeach]

Does anyone have any info on Hyperlexia? I've looked at a few websites but thought I would come to my Dis friends to see if anyone had any experience with this or any insight. DS3 hasn't been officially diagnosed with this but he fits the description. He began spelling words with plastic letters when he was around 2. He is delayed with his speech and he wasn't talking at all at that time. He started out spelling words like cat and dog and very quickly progressed to big words like elephant, and circle. He's 3.5 now and will spell words verbally as well as with plastic letters (he can't write yet) and he pretty much spells every word he knows including words like toothpaste and celebrate (a word he saw at disneyland). He knows how to read and will often point out words to me when we are out and tell me what it says. At least 75% of our conversations all day revolve around letters, numbers and spelling because he is so focused on those things. He is able to talk now but he is still quite delayed and doesn't know how to say a lot of things and also isn't always able to say them very clearly. He seems to have a lot of "book smarts" in that he knows letters, colors, shapes, etc but is behind socially. I thought maybe he was autistic, which maybe he is, i don't know, but he doesn't fit the "classic" signs for autism. I know Hyperlexia is sometimes considered to be part of the spectrum though.

Does anyone have any advice on what things we can do to help DS or does anyone know of any hyperlexia experts? DS has quite an extensive medical history so he's already getting speech therapy and we will be restarting OT and PT soon. He's in a little pre-school class twice a week for kids with speech problems. He also gets feeding therapy (he has a g-tube) and he has a whole collection of doctors including a nuerologist. Right now I'm working on getting him in to see a developmental psychologist. Any other people we should talk to about this?

Thanks for any help!

 

[KirstenB]

I'm sorry I don't know anything firsthand about hyperlexia. Our dd has ASD, and I can remember reading a little about it, and the spectrum.

It sounds like you've really done a great job of drilling down to areas where he needs therapy, and have pursued all of them.

Not to be dense, but is there a downside to the hyperlexia? I'm inclined to view it as a gift. Are you concerned because it takes up a lot of his attention? Are you trying to broaden his interests?

The only suggestion I can offer is based on my own experience. There's an author, Dr. Stanley Greenspan, who has written several books on developmental delays. I noticed when I Googled him, that he also teaches at a large university, but more importantly, he offers long distance classes, regarding autism you can take over the Internet. I'm thinking about enrolling in his class.

I'm not suggesting he'd be a good fit for you, but rather maybe there's a similar distance learning program for hyperlexia.

I just tried to google hyperlexia, and I came up with a website called aithelps.com. It looks like they help with auditory processing. I just skimmed it, but they have resources listed too, like books etc.

Anyway, I wish I could help firsthand.

 

[LavenderPeach]

Thanks for your response Kirsten! I will look at that website you mentioned and see what it says. I've looked at a few websites but you know how it can be overwhelming looking at all that stuff sometimes so that's why i thought I would ask here too to see if there was any guidance for a good place to look.

I know hyperlexia sounds like a good thing with the early reading and all but there are definite down sides. I'm just learning about it but I guess kids with hyperlexia have a hard time with reading comprehension. So they can read the words but don't always understand what they mean which can lead to problems in school. They may need to be taught things in a different way in order to understand it. They can also have social problems (like "regular" autism). There are language problems like repetitive speech and talking in whole phrases that were taught and not arranging the words to make their own sentence. I know my DS does this a lot. He will say various sentences like "I want Mommy to read please" but he didn't make that up, it was taught to him and he says it the same way with the same words every time he wants to convey that message. (Not sure if i described that very good.) Also, the majority of our conversations go something like this
DS: "big A little A"
me: "oh, do you see the two A's?"
DS: "big red A little red A"
me: "yes, I see the red A's"
DS "a-l-l-i-g-t-o-r"
me: "what does that spell?"
DS: "alligator..... a-l-l-i-s-o-n, Allison" (Allison is his speech therapist)
Then he'll notice another letter somewhere
"big M little M"
etc, etc........

This seriously continues all day long. We have the same conversations over and over. Even when I try to ask him about other things it always comes back to spelling and letters. If I ask him what he likes to do at disneyland he might say he likes the dumbo ride but if I ask him more about it, instead of telling me other things he liked he will usually start spelling dumbo or disneyland and sort of ignores my questions. Instead of thinking about the subject we are talking about, he thinks about how the words are spelled.

So that's sort of a brief description of what we see everyday. Thanks again for your suggestions!

 

[BeckyScott]

DS doesn't have hyperlexia, but he was an early reader, a very good speller. He has a children's dictionary with no cover on it because he dragged it around with him everywhere for, uh, about 5 years now. I think he has it memorized.

He does have some reading comprehension probs. He also doesn't like to write. He can spell the words, he just doesn't like to write, with him it's more of a fine motor coordination problem. He is learning keyboarding at school and sometimes at home he'll go into Word and mess around. Have you tried putting him on the computer yet, into Word maybe? Writing and typing don't require the same fine motor, he might be able to type and develop skill that way, which of course will be useful to him for his entire life.

One perk is that we don't have to study spelling words for school. Which is a blessing, since getting him to do the rest of his homework is torture, at least we don't have to worry about the spelling. We joke that somebody has to have the job of proof-reading dictionaries, and it probably pays pretty well.

But that's about all I know about it. I'd say, find the biggest children's hospital or other well-reputed organization in your area and get a full eval done, for anything and everything, just to see what they say.

 

[brergnat]

I would start by having your child evaluated for autism. I know you said you don't think he fits the "description", but since it's a SPECTRUM disorder, it's very possible he has it and the fixation on letters and spelling is one of the symptoms. Hyperlexia is often seen in autistic children. If he is unable to carry on a conversation with you at age 3.5, and has little or no social awareness around peers, that is a MAJOR red flag for autism. My son has autism, and he's 4.5 now. He is a lot like your son, in that he taught himself the alphabet before he was 2, with refrigerator magnets (we had the Leap Frog alphabet toy). He knew the upper and lowercase alphabet at 22months old. He also knew how the letters should sound. At 26 months, he was reading words like cat, dog, up, down, in, out, his name, and coffee (we drove past a coffee shop, and there was a neon sign that said "coffee" and he read it!...blew our minds). By three, he could read the book "Go Dog, Go" in its entirety. He wasn't even potty trained yet...

Now, he can read EVERY word he sees. He reads freeway signs as we drive, street signs (we live in So Cal too, so a lot of "Spanish" sounding names, that he can pronounce perfectly, without any assistance). He seems to completely "get" phonics, all without us having ever taught him ANY of this. He just can look at a word and know how it should sound. It's pretty amazing.

He is also VERY good with numbers. He can do second grade level math. Again, we didn't really teach him much. He just "gets" it. He can add (without using his fingers or any visuals), subtract, understands fractions, etc.

He was diagnosed with high functioning autism (mainly socially delayed) at age 29 months and has been receiving therapy since 19 months (speech therapy was where we started, since he was also a late talker). He has been in special education preschool through our school district since he turned 3, and will be going to special ed. Kindergarten in the fall.

I highly recommend getting the ball rolling on a more inclusive evaluation for your son. He is at an age where he will benefit greatly from thearpy, and if you wait too long, you will miss out on the formative years where you can make a big difference. If he is found to have a significant developmental delay related to autism, or just to speech/language, he is at the age where the school system is LEGALLY bound to provide special education services for him for free. This is where you need to go. A developmental psychologist is fine, but that diagnosis will get you nowhere when it comes to the school system and/or the need for services arises. They have to do their own evaluation. Call your school district and request a developmental evaluation a.s.a.p.! Do this now, before the school year ends.

 

[LUVDZNY2008]

You might want to do some reading on Asperger's Syndrome..these children can not be diagnosed until the age of 5 or 6. Good luck

 

[jodifla]

I would start by having your child evaluated for autism. I know you said you don't think he fits the "description", but since it's a SPECTRUM disorder, it's very possible he has it and the fixation on letters and spelling is one of the symptoms. Hyperlexia is often seen in autistic children. If he is unable to carry on a conversation with you at age 3.5, and has little or no social awareness around peers, that is a MAJOR red flag for autism. My son has autism, and he's 4.5 now. He is a lot like your son, in that he taught himself the alphabet before he was 2, with refrigerator magnets (we had the Leap Frog alphabet toy). He knew the upper and lowercase alphabet at 22months old. He also knew how the letters should sound. At 26 months, he was reading words like cat, dog, up, down, in, out, his name, and coffee (we drove past a coffee shop, and there was a neon sign that said "coffee" and he read it!...blew our minds). By three, he could read the book "Go Dog, Go" in its entirety. He wasn't even potty trained yet...

Now, he can read EVERY word he sees. He reads freeway signs as we drive, street signs (we live in So Cal too, so a lot of "Spanish" sounding names, that he can pronounce perfectly, without any assistance). He seems to completely "get" phonics, all without us having ever taught him ANY of this. He just can look at a word and know how it should sound. It's pretty amazing.

He is also VERY good with numbers. He can do second grade level math. Again, we didn't really teach him much. He just "gets" it. He can add (without using his fingers or any visuals), subtract, understands fractions, etc.

He was diagnosed with high functioning autism (mainly socially delayed) at age 29 months and has been receiving therapy since 19 months (speech therapy was where we started, since he was also a late talker). He has been in special education preschool through our school district since he turned 3, and will be going to special ed. Kindergarten in the fall.

I highly recommend getting the ball rolling on a more inclusive evaluation for your son. He is at an age where he will benefit greatly from thearpy, and if you wait too long, you will miss out on the formative years where you can make a big difference. If he is found to have a significant developmental delay related to autism, or just to speech/language, he is at the age where the school system is LEGALLY bound to provide special education services for him for free. This is where you need to go. A developmental psychologist is fine, but that diagnosis will get you nowhere when it comes to the school system and/or the need for services arises. They have to do their own evaluation. Call your school district and request a developmental evaluation a.s.a.p.! Do this now, before the school year ends.

Wow. You sure know how to try to scare a person.

OP, if you have concerns, have your son evaluated by a QUALIFIED professional before you jump on the autism bandwagon that is sweeping the country right now. Make sure whomever you bring your child to evaluates for ALL disorders and doesn't lump everyone in the ASD category. Since PDD and Asperger's were added to the DSM in 1994, there's been a huge diagnostic "creep" to include lots of other kids whose underlying issue isn't autism, but something else.

Also, trust your gut. My late talker has had 4 evaluations, all negative for ASD. One of those Dxes is from the best clinicians in the country....but the school is still trying to wrongly classify him as ASD. I won't let them mislabel my child for their own purposes (I know the DSM criteria for autism better than the school psychologists!)


What you'll find is that many people DON"T understand what true autism is, and DON'T understand that there are many other conditions besides ASD that can confuse the less trained evaluator.

A university hospital is best if you are near one....make sure they have ALL the DXes on the table, not just autism. Be careful about going to an autism "center"....ask about their rates of diagnoses.

The reason this is so important is that the right treatment is the key, and what's right for an ASD child might not be right for a child with hyperlexia.

Good luck, OP.

P.S. As to the whole "early therapy or your ruined" line of thinking, my LTer's language is coming in at a faster clip now that he's 7 than it did much earlier. And he's been "in the system" with EI since he was 23 months old.

 

[brergnat]

jodifla:
I wasn't trying to scare the OP. I was sharing MY story, since her son sounds EXACTLY like my son did at that stage of his life. I'm not saying they're the same. But, I have known a LOT of people to dismiss their kid's symptoms as "not autism" because they ARE afraid of that label, and they don't get the right help at the right time for their child, because they don't WANT to have an autistic child. Certainly, Hyperlexia is a valid condition. However, it usually doesn't occur along with a complete lack of social skills (i.e. a hyperlexic child should be able to carry on a conversation that DOESN'T revolve around letter/spelling with his own mother by age 3.5...). That's what stood out as a glaring red flag from the OP's post to me.

Since the OP is in Southern CA, she has a lot of options for where to take her child for evaluations. I am also in So. Cal, and am familiar with the resources available here.

FYI, I have 2 sons. My oldest has autism, and my youngest (just turned 3) is a late talker NON-AUTISTIC. He just qualified through the school district for special education services for a speech/language impairment, but he did NOT meet the criteria for autism, and we did not expect him to, as he does not display any other signs/symptoms of autism, and his socialization is typical for his age. He began preschool through the district a month ago, when he turned 3. He is in a special speech SDC classroom. And, I am just as familiar with the "process" of evaluation as anyone. I have had both my kids go through ALL the steps. I know what I'm talking about too. I'm not about pigeon hole-ing kids either. I'm about getting kids the help they need. Clearly, this child has slipped through the cracks somewhere. What he is displaying is NOT normal behavior for his age...

 

[brergnat]

P.S. As to the whole "early therapy or your ruined" line of thinking, my LTer's language is coming in at a faster clip now that he's 7 than it did much earlier. And he's been "in the system" with EI since he was 23 months old.

I have to comment on this. You can't use your late talker's results with therapy as "proof" that early therapy is not entirely necessary. The reason I posted what I did is that, in the case of Autism Spectrum Disorders, SPECIFICALLY, it has been PROVEN that early intervention and therapy BEFORE AGE 6 is critical to changing the overall outcome in later life. By the age of 6, a child's brain is no longer "plastic", and it is MUCH harder to change behaviors, temperament, and other factors via therapeutic means. This is scientific fact. It has been shown that therapy in the preschool years is more beneficial than at any other time in a child's life, as these are the "formative years" for a child's brain, and the therapy has the most impact at this time for the long term.

If, in fact, the OP's child has an ASD, she is doing him a great disservice by dismissing his symptoms as "something else" while time continues to tick by...

Speech therapy is a completely different thing. Speech therapy can be helpful at ANY time in a person's life, as that part of the brain continues to be "open" to learning, such as when a person suffers a stroke and has to "re-learn" how to talk.

 

[bookwormde]

Hyperlexia, is on of the items which can be considered a characteristic of the autism spectrum, but is found in high IQ individuals also along with some people that just seem to “specialize” in this area.

It sound like your child is very intelligent so at his age this makes getting a good evaluation challenging as it would be for HFA or Aspergers. Even getting a good auditory processing evaluation is his age is challenging and prone to errors. If you can find a clinician who can do this evaluation and feels if would have validity it might be worth doing.

It sounds like you are doing most of what would be done with a formal diagnosis so at this point it may be best just to monitor his progress and educate yourself about the possibilities.

Reading Tony Atwood’s “The complete Guide to Aspergers” C/2007 available on Amazon for about $25 would be a good starting point. Your description could be this but with the additional medical history could be just a relatively normal progression considering the other challenges he has been facing. But at least you will know what to look for and many of the therapies for individual characteristics are just a effective for non autistic children with the same issues.

One of the most important thing to monitor for is heightened anxiety, as he moves into the broader social world, but this will likely not occur for a couple of years.

bookwormde

 

[mechurchlady]

brergnat makes a valid point about autism. Us neurovariants live a life where too often we are undiagnosed or misdiagnosed. There is us who lack social skills and go through failed marriages, jobs and friendships but give us a research project or as for a new tool or recipe and we are busy working.

I rather have the mom look into autism and other spectrum related things and find out the kid is not autistic that one mroe of us neurovariants setting in a dark room having tantrums and cringing when someone raises a voice and startling at every little noise and having spent 80 years an outcast who is musunderstood and hated. My mom and I did not get the love and help and training so please check everything possible that you can so that the child does not slip through the cracks like mom and I. It is a miserable life when you slip through the cracks.

hugs for brergnat

Laurie

 

[LavenderPeach]

Whew! I've got a lot to respond to! Thanks everyone for your responses and suggestions!

Actually, bookwormde hit the nail on the head. Because of DS's extensive medical history, he has other possible reasons for all of his autistic tendencies. It would take a whole novel to explain all of his medical issues but I'll just mention a couple things. For example, he had a trach for 18 months and was on a ventilator for 15 months. Before he got the trach, he was intubated (breathing tube down the throat hooked to a vent) and had to be sedated for 5 and a half weeks starting at around 9-10 months old so it was during a key language development time. Once he was awake, the trach made it difficult to speak although he did have a special valve to help. The trach, vent and oxygen were used because he had so much trouble breathing and we had to concentrate on keeping him stable (he used to crash fairly easily) so couldn't work on speech or other therapies at that time. He was also in and out of the hospital his first couple of years (the neurologist says hospital time = zero development) and because we knew his chances were good that he would eventually get off the vent/trach, we kept him fairly isolated to keep germs and infections to a minimum. If he got a bad cold it could have lead to pneumonia and other breathing problems which could have caused some lung damage and he might not have been able to ever get off the vent. So he had very little contact with the outside world and with other people (besides our family) until a little over a year ago. Because of DS's medical history the neurologist thinks that he is delayed because of his lack of experience in the world and because of so much time in the hospital. He's having us see if DS shows improvement by our next appointment in a few months and if not then we'll move to the next step of helping him.

So, all the doctor's and therapists take the medical history into consideration and when I've asked about DS being autistic, or even now with this hyperlexia, they say they just aren't sure because he does have other reasons for these "symptoms". His current speech therapist says she is leaning towards thinking he has hyperlexia but she doesn't want to say yet for sure. She doesn't know a lot about this condition but has talked to some of the other therapists about it and will be looking into it more. I've just started asking around about this but so far not many people know much about it. The speech therapist DS sees through the school district hadn't even heard of it (she's an older lady so it probably didn't exist when she was in school to learn about such things) but after telling her what i knew she could see how it's possible he might have this.

So, I'm not saying DS isn't autistic but every time I've asked, no one seems to definitely think so. I'm also not trying to force a hyperlexia diagnosis on him, it's just that the descriptions fit him so well. There seems to be something going on with DS so that's why I was researching it some more and discovered hyperlexia which really makes sense. I'm not trying to avoid an autism label or dismiss the problem as something else and I'm also not trying to label every quirk as autistic or just jump on the autism bandwagon. I'm just trying to figure out what the problem is and get DS the help he needs, it doesn't matter what it's called.

I will also add that before DS turned 3 he seemed to be showing signs of being apraxic. Between ages 2.5 and 3 it seemed to get more obvious that he had apraxia and his speech therapist at the time was reluctant to officially diagnose him that (because of his age) but she thought that seemed to be where he was going. Well, I don't really see any signs of apraxia any more. So I don't know if he will grow out of this too? I'm not counting on it but it's a possibility.

Anyway, I guess I just wanted to see if anyone knew of an expert in hyperlexia or knew of a good website or book or knew of some specific things I could try to help him. We do have a teaching hospital close to us where we've had most of his medical stuff done and while it's not a terrible hospital, I'm not thrilled about it either so I'm not terribly excited about teaching hospitals in general but we've been doing several things recently at CHOC (children's hospital orange county) and so far they have been great. They're an hour away (2 hours in traffic) so I can't go there for everything but that's where we're getting speech so I'm hoping they'll come through for me.

Thanks again everyone for your suggestions! I really do appreciate it! Anyone else with info, please chime in! Thanks!

 

[LavenderPeach]

brergnat makes a valid point about autism. Us neurovariants live a life where too often we are undiagnosed or misdiagnosed. There is us who lack social skills and go through failed marriages, jobs and friendships but give us a research project or as for a new tool or recipe and we are busy working.

I rather have the mom look into autism and other spectrum related things and find out the kid is not autistic that one mroe of us neurovariants setting in a dark room having tantrums and cringing when someone raises a voice and startling at every little noise and having spent 80 years an outcast who is musunderstood and hated. My mom and I did not get the love and help and training so please check everything possible that you can so that the child does not slip through the cracks like mom and I. It is a miserable life when you slip through the cracks.

hugs for brergnat

Laurie

Thanks churchlady for your input and encouragement! I agree with what you're saying. With all of DS's medical issues, I've learned that you have to take things into your own hands and research stuff yourself because too often things get overlooked or ignored. And even when things are brought to the doctors' attention, they don't always follow through with things like they should. So that's why I am trying to look at all the possibilities. Not sure if DS will turn out to have autism or hyperlexia or both or something else but right now he's showing signs of hyperlexia so that's what I want to try to help him with.

 

[brergnat]

LavenderPeach:

Thank you for sharing some of your son's medical issues. That helps to shed some light as to why he's delayed. I know how frustrating it is to try to "pin down" what's going on with your child. We went through the same thing with our younger DS. First, we thought he was fine, then he had an obvious speech delay, then he started showing autism symptoms, but it turned out he was just mimicking his older brother's behaviors. Then, we thought he had apraxia of speech, and his speech therapists did too, but he seems to be outgrowing that, as since he began preschool, his language has just exploded in the past month, and he does not seem to have the same degree of difficulty forming sounds as he used to. The change in him in the past year (from 2 to 3 years old) has been remarkable. A year ago, he could only say "ba ba", and now he has close to 75 words in his vocabulary, and is saying 3 word phrases which is so encouraging. I still think there is a possibility he has slight apraxia, as he has difficulty making the sounds he wants at times, but he is still so young, and they can't formally diagnose that until older, so we're at the "wait and see" stage with him. It's hard.

Our older one was so much easier. He was CLEARLY autistic from a very early age (by 6 months, we knew). He had ALL the autism red flags, and it was just a matter of getting a formal diagnosis in writing. My "gut instinct" told me he had autism the day we brought him home from the hospital. But, as he gets older, I think he will be categorized as Asperger's, and for awhile I *thought* he had Hyperlexia (due to the fascination with letters/numbers), but in addition to his ability to read, he ALSO has the ability to COMPREHEND what he reads, even at this early age, which is not a hallmark of hyperlexia, so I tend to think he just has high intelligence, and is more "book smart" than "socially smart".

What many people (therapists, teachers, etc) tell me when they find out he can read is "oh, yes, many autistic children can read, but they don't understand the words--it's called hyperlexia"...well, my child DOES understand the words, in context. You can write down a question and he will read it and answer it. He can read stories and you can ask him questions about it and he answers them correctly, so I know he has reading comprehension. Have you tried this with your child? Have you tried writing down simple words (like animals?) and ask him to point to the picture that goes with the word? See if he can "comprehend" the written words that he knows. That will clue you in a bit as to how much of what he "reads" he can really understand.

Good luck with your journey. I hope you are able to get the help you need. Where do you live, by the way?

 

[LavenderPeach]

Thanks brergnat for your insight! It is frustrating to figure out what the problem is because I want to make sure we're getting him the help he needs and it's sort of discouraging to be facing yet another diagnosis. I keep waiting for things to be "normal" since all this started with a birth defect fixable with surgery (surgery was done at 22 months) but I think DS has his own unique path he's going on.

Thanks for sharing your experiences about your sons! That's interesting that a lot of autistic kids read early. I didn't know that before. Your younger son sounds like he was doing the same thing as my DS with the apraxic-like tendencies that now seem to be mostly gone. It sounds like he's making great progress too! How exciting for you!

I've been trying to ask DS more about the content in the stories we read to see if he understands what is going on. It's hard to tell sometimes if he doesn't understand or if he just doesn't have the words to tell me. He does seem to have difficulty with some types of questions which I saw was a sign of hyperlexia. He also doesn't always seem like he's paying attention to the story. He will often seem more interested in turing the pages (he likes to open and close things and see how things work) or he's more interested in the words than what the picture is showing or what I am saying about the picture. I noticed a big difference when I was reading to his little 2 yo cousin. I'll try what you suggested with the words and pictures and see what happens.

Thanks again for sharing! I live in Yucaipa, btw. It's about an hour east of OC of the 10 in the foothills below Big Bear. I used to live in Aliso Viejo and I worked in Irvine for several years.