ASD and hyperlexia

I am new to this website and came across it whilst doing some research to try and help my son in school. He is 5 years old and has complex needs. He has congenital myotonic dystrophy and was born with bilateral club feet. He was diagnosed as having an ASD last year.  

My question is: How do you get your child tested for hyperlexia?

My son could sight read over thirty words at 2 and a half. He is now 5 and a half and has a reading age of 8+ (level 3). He reads with full expression and just appears to read new words. He reads books quickly and loves to read all the time. He is obsessed with his dictionary and learns the definiton for words off by heart. He is though struggling to spell words and use phonics. He hates to sound out (he also has speech & language problems due to weak facial muscles). He cannot write due to his dystrophy so uses a laptop. He also is struggling with comprehension. He is obsessive, anxious, has strict obsessions with time, Welsh language, signing, scanning at shops, tv - he loves quiz shows and does a mean Bruce Forsyth play your cards right.

 At school he is now displaying tantrums at school all linked to writing, spelling and phonics. I would like him tested so that his school can meet his very individual needs - we have been having the phonics battle since the start of reception!

 I am a secondary school teacher so do have some idea that things aren't currently working and that I need to get him further help.

Hi Kelly

Welcome to the group.

I have to say I had never heard of hyperlexia and had to go "google" it and was astonished to find that it is very similar to Aspergers Syndrome.  My son also seemed to be able to read words very easily, but he is not interested in reading (he is 14 now).  I have lately started to wonder if he is dyslexic or word blind, but he is a whiz with numbers and anything related to the sciences, especially space.

I would be having a stab in the dark as far as who would be responsible for assessing diagnosing this, but I think the sensible option would be a SALT (speech and language therapist), but sensible isnt always what is on offer as I am sure you have found out.   I would imagine that your GP would know where to refer your son.

Josie - Community Champion

Our clinical psychologist had a working diagnosis of Asperger's for my son, but they feel he is still quite young and has neuromuscular condition also - congenital myotonic dystrophy, and children with this have lots of autistic traits so I feel they played safe and said ASD instead. I am awaiting a referral back to SALT as he was discharged sfter nursery (much to our utter amazement). Many thanks for your quick response as sometimes I feel like I'm fighting anyone and everyone to listen as my son has such complex medical and learning problems! I know I'm not alone and that we are all fighting the same battles up and down the country. I have just emailed to random names I found having done a study on a 4 year old boy off the net (a stab in the dark). I await a response with great anticipation:-)

Hi there and welcome to the group.

I haven't got an answer about the hyperlexia but I have heard of it before....not sure where/when though so absolutely no help at all!! Please keep us posted though as it sounds it could be very interesting... 

Claire - Community Champion

Hi Kelly, and welcome!

I too am unfamiliar with this but will do a little nosing around to see what I can turn up! : )

Elena

There is a hyperlexia group on Yahoo. I read up on it when my son started reading at 2. In the end we decided he didn't have hyperlexia. Alot of children with autism learn words by rote rather than sounding out, he could just be a rote learner. True hyperlexia as I understand it means learning to read without any comprehension of what they are reading ie they might start reading the credits from the tv but not understand the words at all. I think this is slightly different from being an early reader ie knowing ball means a ball and as you get older struggling with comprehension of more abstract concepts which tends to go with ASD eg difficulty in understanding intentions or emotions or taking things literally. A SALT who specialises in ASD should be able to assess. I think as for a lot of ASD things there is alot of overlap. 

Dear Kelly and welcome to talk about autism

Just to add that there are a couple more places that you can go to for more information.  Online resources include the NAS website (http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1581&a=18047) or there was a discussion on this forum about hyperlexia as well (http://www.treehouse.org.uk/forums/autism/general-autism/886) which you might already have seen.

One of my colleagues here at TreeHouse also suggested this book which might help:

http://www.amazon.com/Reading-Too-Soon-Understand-Hyperlexic/dp/09637921...

If I receive any more information about getting a diagnosis I will pass it on.  I hope this helps in the meantime.

Thanks!

Anna

TreeHouse Staff

Many thanks for all your comments. I have recieved an appointment to go back and see the clinical psychologist to ask him on his thoughts. It's just that there is such a large gap between his reading age compared to comprehension, spelling/phonics and writing and in school he is trying to avoid or answer inappropriately or refuse to do things around litearcy other than his reading. Will post back any news I get and thanks again

Kelly

Great, good luck with the appointment!

Good news about the appointment  Kelly, I hope you get some answers... 

Claire - Community Champion

My son is Hyperlexic too. He was reading words off the sides of buses and posters at the age of 2 without even knowing what the words meant.  He was also a whizz at his Day nursery at 18mths. They were stunned when he sorted out all their folders etc on their computer.  He hates reading usually and will do all to avoid it.  But recently, we strolled in Waterstones, and there was an author doing a book signing.  He explained a'brief' detailed outline of his book at top speed (I couldn't keep up with him and thought it was the ramblings of a madman).  My son was impressed, and wanted a copy of the book (which we got signed).  Since then, he's been reading it.   Anyone heard of 'Curd The Lion'?  A book of nonsense.  If you got lost in Alice In Wonderland, well... you'll get triple lost in this one and wont know whether you're coming or going!  But he loves it - who am I to stop him??

My daughter has Dyslexia. She hates reading, with a vengeance.  If she has to read at school, she'll read the lower age group books.  But... she's reading (sometimes).

Both were tested for Dyslexia.  My son isn't Dyslexic. 

Karen

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