Anyone have experience of hyperlexia?

[SinkGirl]

Looks like we are heading down this route with one of our twins. He’s always been obsessed with numbers and letters and recently discovered he can put all numbers and letters in the right order and has memorised some spelling (eg. He has a magnetic whiteboard with magnetic letters and numbers - yesterday I put the digits up1-10 and he spelled all the words next to them). He’s been copying out words for a while but obviously he has memorised some words.

I know that hyperlexia generally means reading / spelling with limited or no understanding. He is autistic and completely non verbal, no attempts at speech at all. They’re 4, by the way. They are both generally delayed across the board other than gross motor so I’m finding it quite incredible that there’s all this information stored in his brain and I have no idea what he knows or doesn’t know. Understanding of spoken words seems to be very limited but impossible to know for sure.

Just wondering if anyone has any experience of helping develop these skills to aid communication / understanding? In a bit of limbo at the moment due to COVID in terms of SALT so any experience / ideas would be greatly appreciated.

[turtletattle]

that's amazing for 4 that you've found that so early. Finding the key to help them learn is the hardest thing.

[SinkGirl]

Thank you, I will look at those.

The difficulty with a lot of systems is they assume speech / fluent understanding of speech, existing understanding of constructing sentences etc since that’s the case for most children learning to read - I’ve lost count of the number of toys / apps we’ve tried that we can’t use because they give spoken instructions.

[RosesforMama]

My 4 kids all pretty much taught themselves to read using Starfall which I believe is still going. I prefer it over letter land etc. Might be worth showing him?

[SinkGirl]

Oh I really would love to do a Freaky Friday with both my twins. Actually that’s even more true for DT2 as they know he’s visually impaired but no one knows what he can see or what things look like to him. I would love to know.

Been thinking about getting some of the first reading books they use in schools but no idea what I’m looking for.

I shouldn’t be surprised really as he spends so much time playing literacy games on an iPad - basically like shape sorters with letters and words though. Today he was playing a game where he has to draw shapes and the word appears first so tomorrow I’ll draw the shapes on his whiteboard and see if he can spell them. Every time I think he won’t be able to do something, he does. It was only a few weeks ago I was surprised he could link a letter to a word, now he’s spelling. Just feel like if I can find the right methods he can learn so much.

[turtletattle]

my dd thought all daddies had curly hair at because her daddy did - it's tricky to think how she understands the world, and that she'd first identity a dad by how they looked.

Not helpful sink but the borrow their brain for a day struck a cord. If anyone has any book recommendations for visual learners?

[SinkGirl]

Thank you - we do most of those things and he’s good at asking for help when he needs it but it’s generally pulling your hand to what he wants etc. He is making more eye contact recently and sharing emotions more. Until recently I wasn’t sure he understood any spoken words but I now think he does.

At school i had a very advanced reading age and often needed dispensation to be allowed to bring my own books in, or access to the older children library books.. i branched into writing poetry and stories as an adult, and i'm an avid reader of books.

That was exactly me when I was little. I remember saying to my mum after my Nan died that I wish I knew how she had taught me to read so young, but now I’m wondering if maybe she didn’t and I just learnt myself. I’ve always had this weird feeling that I know how to spell things instinctively which can’t possibly be true, but I guess I took a lot in when I was little, more than I realised.

I actually don’t care whether he can talk or not - I do hope he can learn to communicate some way fluently so he can express his thoughts as he’s obviously very bright and there’s a lot going on in his head.

[Busygoingblah]

That sounds like positive news that he’s mis spelling/ making errors. That means it’s not just simple repetition.

How’s his motivation to communicate? That’s probably the bit you need to work on the most to give the potential for the spelling to be useful for communication.

I’d have a think about the ways you can increase the number/variety of PECS exchanges in a day. Things like offering more choices, putting favourite toys in high places or in a clear box so he has to ask for them, forgetting to do things like give a spoon for his yogurt or open a snack so he has to ask for help, hiding key parts of toys like the marbles for the marble run or finding exciting things like windup toys or rocket balloons that he needs extra help to use.

You need to make sure he’s practising the ‘rules of communication’ and getting to experience the rewards that communication brings. That way he’ll be much more ready to combine his literacy skills with something like a communication app going forward.

It sounds like he’s doing well though!

[MrsHusky]

I'm hyperlexic, and like a lot of people here i used to read EVERYTHING i could get my hands on, cereal boxes, shampoo bottles.. i still do that now tbh xD

At school i had a very advanced reading age and often needed dispensation to be allowed to bring my own books in, or access to the older children library books.. i branched into writing poetry and stories as an adult, and i'm an avid reader of books.

I learn much more visually, and i prefer having the subtitles on if there are any, as i also have some sensory issues with my hearing and can struggle to 'hear' if there is a lot of noise going on around me.

My son has ASD/ADHD and Dyspraxia, he is the same as me with his reading. He didnt speak until he was 4, the few words he did have were his own language, and it wasn't until he was attending nursery/school that his speech suddenly blossomed.. he monologues, has echolalia, and doesnt shush at all now.. there's a constant stream of inner monologue emitting from him, or noises.

We got around the comprehension through the use of subtitles and association!

[SinkGirl]

He does use PECS but at the moment only for basic exchanges for tangible things - eg specific foods, books, or bubbles. Can’t form a sentence yet or request more abstract things. We should have ProLoQuo shortly.

I think he’s learnt to spell cup and daddy from the tiny words on his PECS cards, wouldn’t have seen them written much otherwise.

[RosesforMama]

That's so exciting, sinkgirl.

I wonder if he would respond to pecs?

We had a lad, bright as a button but unable to speak, he achieved brilliantly using proloquo to go - he started with basic pecs and built up to sentences etc.

[SinkGirl]

Did a little test with DT1 today. Put photos of me, DH, a cup and Duggee on his magnetic whiteboard and I spelled out mummy with magnetic letters next to my picture.

He then spelled out cup, then daddy and then hey daddy... so a bit of an error there at the end. The interested thing to me is that the things he spelled right are the things he has seen written down the least (he’s seen the words Hey Duggee hundreds of times on his books and episode intro). So definitely doesn’t seem to be a photographic memory, and he is clearly understanding that the words he’s spelling have meaning, which I really wasn’t sure about.

I really wish I could have his brain for a day and know what he understands and what he doesn’t.

[Ormally]

I've also found it really interesting to hear all experiences. It has really made me think that parts of the 'feel' of it are almost a bit like some descriptions of ADHD with hyperfocus. For many things, you feel that should be helpful and sometimes very beneficial to you - not so much if you're trying not to fixate on number plates in front thinking of words, when needing to drive.

I was only assessed quite late in life and it came as a huge surprise to find out that these things are not something that everyone does. itchyfeet, the assessment showed up a dismal processing speed for me, which unfortunately casts its net quite wide - emotional stuff can't be shrugged off until processed and that's slow. It means the old style internet icon spinning its wheel.

[threeitchyfeet]

I'm very much the same as Ormally. Taught myself to read at 3 as my parents had been told that they should leave it to the school. I work with language(s) now, but writing is so much easier than speaking. If I have to make a phone call in another language, I panic that I must actually be terrible at the language because I can barely understand a word, but then I remember that I'm the same way making phone calls in English. I even have subtitles on while watching English TV. I have very acute hearing but the processing part seems to take a while. Also suspect I am on the spectrum, and have two ASD DC (one with hyperlexia also) but we have all always been verbal.

[SinkGirl]

@Busygoingblah

Speech therapist here

You need to see if he can link any of those words or number to meaning. Can he match the word ‘cat’ to a picture of a cat? Can he match the number 3 to a pile of 3 counters?

There’s a big difference between rote learning the order of something and attaching meaning to that. Once you know if he can match individual words to their meaning you will know if it has the potential to be useful for communication.

Some children with ASD progress from PECs to an app such as proloquo2go to support their communication. This gives them a lot more options and vocabulary. This is more move is more likely to successful if a child has some literacy skills.

Those things are next up to try - he is supposed to have ProLoQuo2Go now but LA dragging their heels sorting it out (we borrowed one over the summer and he could use it well - he’s very good with tech generally but not at the stage where he can form sentences yet).

Thanks so much everyone, it’s so useful to hear your experiences.

[Tiggles]

All my children learnt to read early but I think only my eldest is(was?) hyperlexic. He also has asd.
As a toddler he wouldn't eat any food without having me read all the text on the packet first. Couldn't walk past a road sign without knowing what it said etc
Fortunately he leant to read at 2 so could soon read them for himself.
He did appear to understand what he read though - he read Harry Potter in reception and could talk all about what had happened for example.
Now he is an adult he enjoys reading, and I think he doesn't easily walk past text without skim reading it, but it certainly isn't the problem it was when he was small.

[PlayDohDots]

I have ADD and am also hyperlexic. The best I can describe it is almost like a hunger for words, comparable to the feeling when you finally get food after being starving and can experience that wonderful sensation of it filling up your stomach. I think hyperlexics read because they crave the pleasurable feeling that comes with "filling up" their brain with words. NT people may not experience this so that's why reading is more of a chore than a pleasure.

My earliest childhood memories was reading everything I could get my hands on. If I didn't have anything new I'd read the same books or magazines over and over again. I do recall that getting new things to read was vastly more pleasurable, so the best thing you can do is keep supplying books or magazines.

One book I absolutely loved was the Children's Dorling Kindersley Illustrated Encyclopedia. It had loads of topics divided up into small sections of info, with photos or illustrations making it even more stimulating and pleasing to look at. Once older, you could try giving your son age-appropriate encyclopedias to read. The fact that everything is sorted alphabetically makes it very satisfying and soothing to go through.

[Busygoingblah]

Speech therapist here

You need to see if he can link any of those words or number to meaning. Can he match the word ‘cat’ to a picture of a cat? Can he match the number 3 to a pile of 3 counters?

There’s a big difference between rote learning the order of something and attaching meaning to that. Once you know if he can match individual words to their meaning you will know if it has the potential to be useful for communication.

Some children with ASD progress from PECs to an app such as proloquo2go to support their communication. This gives them a lot more options and vocabulary. This is more move is more likely to successful if a child has some literacy skills.

[scrunchSE18]

Is verbal dyspraxia the same as childhood apraxia of speech? I increasingly think DT1 has this as.he can only make one sound and his tongue moves strangely

My son only had one sound (da) for quite a while (3+). He was lucky enough to go to a special nursery (ICan) for a term who diagnosed the dyspraxia. Lots of exercises/games involving getting him to move his tongue in diff ways and his lips too including blowing bubbles, licking things off his lips etc Signing alongside trying to speak helped him but every child with ASD is different (my Dd is certainly diff from her brother). DS was under Salt for a long time helping with indiv sounds as well as social comms . For him there’s been a good outcome - he’s upstairs on a uni lecture right now doing something he loves.

[SinkGirl]

Secondly, that if text is in a language that I don't read or speak, I'm still somehow trying to 'decode' it, still taking it in, and I can notice after about half a day that it becomes really exhausting

I remember convincing my Y7 teacher I could speak French because in our early French lessons I was reading the books aloud - I got put in the group with those who could already speak some French but I didn’t know any, weirdly I could read it convincingly though. I suppose it must be a bit like that if you have hyperlexia and can read but not understand.

I can’t get over things like he understands that lowercase and capital letters are the same thing but have different rules - like he knows that E and e mean the same, and he might put E at the start of Eight, but got upset when there were no lowercase e left and he was trying to write nine, because capitals don’t go at the end of words. It’s so interesting, but not sure it means much in real terms when it comes to him being able to learn or communicate.

[Ormally]

Blueemeraldagain -
"I have had this weird compulsion to read all text around me at all times. One of my strongest memories is not following any conversations at breakfast as a child because I was reading the text on the cereal box."

Yes! I am the same!
The visual stimulus can regularly crowd out a lot of other things, especially conversations. Your focus is there, you can't tune it out very well at all.

One thing I have noticed connected to this is that bus or tube adverts have a strong ability to do this - not so much other adverts. Secondly, that if text is in a language that I don't read or speak, I'm still somehow trying to 'decode' it, still taking it in, and I can notice after about half a day that it becomes really exhausting. Under normal circumstances, it's usually more absorbing, but it is still a much better thing to try and have breaks doing something else, to recharge.

[SinkGirl]

Yes @RosesforMama - that was my thinking too, that it might be a bit like echolalia, but then he spelled out the words for the numbers next to the digits and I can’t think when he would have seen them laid out like that, unless there’s a poster at his school or similar in his class. This surprised me as I didn’t expect him to be able to do it, but then it was only a couple of weeks ago that we were surprised by him matching a letter card to a picture card with text underneath (eg. Aa and a picture of an apple with text underneath).

I’ve printed off some pictures and corresponding words and will see if he’s able to match them.

Hyperlexia often is linked to ASD but reading about it recently, apparently there are hyperlexic children who appear to be autistic but as they get older the autistic traits reduce or disappear completely. It’s very interesting. I am pretty sure DT1 is autistic regardless, and I’m not sure I could even say he’s hyperlexic as I don’t know that he can read. It’s all very complex but very interesting.

[SoupnSalads]

This is so interesting, I had signs of hyperlexia as a child, my job now basically involves reading and writing, I'm v good at it! The only thing I was going to suggest is whether having radio on would be any help, I find visual stimulation is easily over stimulating for me, but radio/audiobooks are a happy medium and I find them very relaxing.

[Blueemeraldagain]

I’m hyperlexic and dyslexic. I have had this weird compulsion to read all text around me at all times. One of my strongest memories is not following any conversations at breakfast as a child because I was reading the text on the cereal box. I also feel this need to have subtitles on at all times. My brother is (diagnosed) autistic. I wonder if there is a link?

I think the things that helped me most was being to spoken to all the time (constantly, we are a very talkative family, ASD aside) and read to all the time so I associated meaning with print?
This suggestion may not be right but rather than PECs or signing (which are by nature symbolic so not appealing to a hyperlexic?) could you try a print word exchange system? So PECs but with words?

[RosesforMama]

I once worked with a non-verbal autistic little boy who would spell out words using magnet letters. Mostly words from TV shows eg "Postmanpat". He appeared to switch lower and uppercase letters correctly. However if you watched him he didn't build the words up left to right, he started at a random point and build the word up to left and right.
I tried writing to him but he was uninterested/ unable to communicate via writing, he didn't show any interest in the words I assembled even if they were words he had previously made. I concluded that it was possibly a sort of visual echolalia - a photographic memory reproducing a word snapshot. It did tell us that he was likely to respond to visual and tactile teaching methods though.

[Ormally]

One thing I might try is to make sentences, a bit like flash cards, but from strips of different coloured paper or post it notes. Names in their own colours, verbs and nouns in the same colours per category. You could add a few small drawings and build things like 'Sam is happy', 'Tim is tired', 'Mummy would like toast'. 'Sam and Tim are going home.'

It's hard to explain but I sometimes do this with my DD, now 10, basically as a lucky dip from 3-5 cups to make sentences that grammatically make sense but might not really connect otherwise. We change them around so they make more sense. An example might be (dashes show the part on the different coloured papers):
The- broken - bright red - tree - in the parcel
to: The broken bright red -bike- -by the fence-