Hyperlexia

[Ohforaquietlife]

Hi everyone - me again. I've started this under a new topic as I'm certain this is my son's problem and I'd like to know if there are others out there experiencing the same thing. The following quote is from another message I posted elsewhere just to bring you up to speed

 

"I want to bring this subject up again as it has only recently dawned on me that my son has this condition and it explains why the strategies they are using at his autism-specific unit are working for other children but not for him. According to the American Hyperlexia Association (www.hyperlexia.org )this is a syndrome in its own right although it often occurs with ASD and in many of it's features is indistinguishable. The difference is that these children need a different approach using the incredible reading abilities that they all possess.

 

I'm feeling really frustrated right now as my son's paed says it is just another feature of autism and refuses to recognise it as something subtly different meriting a shift in his diagnosis with consequent changes in his provision. The AHA disagree and at least the paed has said she will read their information which I'm going to send her to back up my "delusional mother" claims but I'm sure she won't change her mind and so for my son, nothing changes. I need to find someone who is working on this condition here in the UK to get anyone with any clout when it comes to an AEN Panel review to take any notice - apparently anything american doesn't count. Sorry any americans who might be reading this

 

I can now see what needs to be done for him but me doing it in isolation is unlikely to get the result that could be attainable. We need the school on side and we need full-time experienced one to one - fat chance!!Does anyone out there have any experience of working with a child with hyperlexia? I'd be really grateful for any input."

 

I have spent this evening writing instructions for my son on his beloved Megasketcher and he has found it highly amusing! He read every one, giggled then did exactly what he'd read!!! Why did I not think of this 5 years ago when he was writing his alphabet out (in order) at the age of 3 and spelling "Pocahontas" with his magnetic letters!!!! I think I have found the way forward - to hell with what the paed thinks

[florrie]

I don't have any experience of working with hyperlexic children but i am hyperlexi, and am really passionate about getting this recognised and can give you my experiences which might help a little.

 

I read fluently at 2 and was considered gifted and even got a scholarship buty the time I was 9 but by the time I was 12 i was considered remedial and I went to a number of different schools, and different types of school, because my parents moved a lot. i went from top streams to boottomsstreams in space of ayear when I went to secondary school, no matter how hard i tried, this was because of my serious auditory processing difficulties, which i only learnt about 3 years ago and Ihad to go privately to an american speech and language pathologist to get this recognised, and i scored as bad as yu could get on the hand I had gifted ability for letter and digit recall, photographic memory for charts and facts etc and I used to read about 2000 books a year.

 

I t was very stressful at school and I felt stupid although i scored higher than the adult on mastermind when she did horses as her specialist subject, i was always very popular because my interests were popular ones such as horses although preferred my own company much of the time.

 

I kept failing my exams except for english language and used to spend 18 hours a day working and revising, i eventually passed enough to get me on a secretarial course but i failed the audio typing component, because of auditory processing prob, I became very depressed and reclusive also had a lot of violence at home so things were difficult.

 

when my son got dx with autism and I began to understand what it waswith the scewed cognitive processing but he and he is opposite to me he could play chess at three had very little speech and had difficulties reading and I thought I also had aspergers because tjhe psychologist said it could be that way round and I got tested.

 

Up till then I had had seriious mental health problems none of which were dx because i couldn't explain them at the time but Ib elieve it was due all the stress with trying to cope, it is so much more complex than i canput here and I'm sorry it is long but that alsways happens when I try to explain something I k ow a lot about and I sense I ususally lose people . there are difficulties with critical thinking abstract concepts and organisation.

 

If you know what happened to me you can be aware of the pitfalls, although obviously no two people's expereinces will be the same, I believ I'm gifted i have no confidence in my abilitiesbecause they were destroyed I can't get the medical profession to take any of it seriously,

 

I am sopassionate that no one goes through what I went through and I'm sure there are people that have wound up seriously mentally ill bnecause of these problems nt being recognised, I also cvelbrate neurodiversity and that our abilites should be celebrated and valued for what they are and then these mental health problems wouldn't arise.

 

Sorry this is so long, I'm sure your son will be fine and please don't give up trying to get his difficulties and gifts recognised.

 

Lindamood bell in London do programmes for the problems associated with hyperlexia, it depends how they manifest themselves, they would really have helped me if they had been around when I was a teenager

[florrie]

I forgot to give some advice which may be helpful, i was so intenesley engaged with giving you my own experience.

 

first of all professor gillbergs believes there is hyperlexia with auditory processing or comprehension probs and hyperlexia without, in my opinion it can't be hyperlexia without because the auditory processing is what makes it a disability.

 

If your son has the auditory processing problem he will probably have similar or same symptoms of asd need for routines obsessional and narrow interests and these are necessary to follow, as that is how they process information and manage to cope and that is essential to be understood.

 

has your son had any psychometric tests done?

[florrie]

Sorry I keep forgetting to add information I think is relevant, also if you feel he fit s the criteria I have described, then you need to get educational people to understand the Lindamood bell programmes, because Nanci Bell was the woman who first identified hyperlexia about 20 years ago when she was working with other children with special needs such as dyslexia, she identified a group of very bright children that weren't doing well in school and she identified a pattern and programme to help

[researchboffin]

Hyperlexia is a variant of autism and a savant skill. Florrie who I know reads about 1500 (1500 really) text book equivalents a year. She is in her 40s and has been studying certain areas for about 25 years. As she has 3 overlapping all consuming interests that means that she has read about 12500 books on each subject compared to say me who think I am doing well to read 40 textbook equivalents a year so even if I only read on one consuming interest, in 25 years I would have read 1000 textbook equivalents. So she has read 37.5 times more than I have in that timeframe.

The downside is that because she has Hyperlexia she cannot form a Gestalt or whole and so while I can pigeonhole all that I have read and organise it and critically think about what I have read, she cannot. She stores her facts in one huge box.

Also because she has an auditory processing problem as part of the Hyperlexia she cannot remember or has not taken in as much of what she has read as I would.

But in spite of that she retains say 10% of what she has read compared to about 30%. So overall she has a factual knowledge gain of a factor of 10 over me a neurotypical.

Also, because of her single database she both cannot access it very quickly or extract from it very quickly. And sometimes she comes out with something that is not what she wanted to say at all even though it makes perfect sense. Also she does lots of malaprops - cross flannel cherry for cross channel ferry for example.

But there is another plus factor. Because she has all her facts in a single pot she makes connections that would never occur to a neurotypical.

The other thing is that she is a bit of a word genius. So she can remember lots of words that I cannot even start to without any immediate purpose. In Florrie's case she remembers all the ingredients on labels or tables and charts of information.

OK so back to the thread. Hyperlexia is a condition that is highly correlated with ASD and ADHD but it is not the same and can co-exist. Caught at an early stage and with intensive input there can be remarkable improvements and the ability to form a gestalt can be recovered. Lindamood Bell Learning Processes in the USA and with an office in London run intervention programmes with a number of US states. On their website there is a good amount of information on how they both identify hyperlexia and treat it. They have a research aspect and have now treated several thousand people with hyperlexia and have good results for getting improvements in the weakened comprehension starting in the bottom 3% of all people and getting them back into the normal range between 25% and 75%.

Snag is that there is nothing like it available in UK through state provision and it is expensive to deliver.

But I do not think that hyperlexia is the same as ASD which seems to creep ever wider and wider in its definition and as a result leads to ever more inappropriate treatments of those with a dx.

It is a major problem that our state education system and most qualifications are based around a single model of learning when there are between 7 and 9 different learning styles and the styles that are best for ASDs are not generally applied to them.

It is also a major problem that ASDs are seen as being akin to mental illness or retardation when thay are neither. By and large the ASD person has an atypical profile and our state is locked into a model that endorses only the typical and deliberately and systematically excludes and devalues the atypical.

One obvious way this occurs is through the use of IQ tests that are designed to neutralise any distortions and whose results are of little value to anyone. And these are a core part of the definition of ASDs.

Another is that psychologists are devalued in the NHS and generally work to psychiatrists who are in global terms overdue for extinction like the dinosaurs that they are. Now that neuroscience is advancing to understand and identify differences in brain function it is actually absurd to think that a process of sitting down and chatting to the patient is a sensible or relaible basis to reach a diagnosis.

Finally almost all the research that is commissioned about ASDs is a complete waste of money and time and is so fragmented as to make it impossible to draw any wideranging conclusions.

So practical steps:

Get hold of Lindamood Bell "Visualising and Verbalising Kit" and try to get on a course to learn how best to use it, they run in London sometimes, or if you have lots of dosh like about ?20k use their programme and whilst if there is autism present that will not go away, there a good chance that the downside of the Hyperlexia will be significantly diminished. There are Hyperlexia Associations in both USA and Canada that have lively active and informative websites.

There is also a tangental chance that work with speech and language people dealing with Semantic Pragmatic Disorder may also be able to work to help improve the downside but it is a risky thing.

There is also an organisation called AFASIC who are involved with all aspects of speech and language difficulties.

If you can engage with Dan Morgan, Clinical Director at Lindamood Bell in London he would be able to explain the condition to any medico and leave them for dead on what they know about everything to do with a range of conditions. USA Canada and Australia are light years ahead of UK.

Any further help, please PM me.

And good luck and keep fighting its a war we are fighting and we will win.

Edited February 16, 2006 by researchboffin

[Ohforaquietlife]

Thank you both of you for your advice. I will certainly follow up all the leads you have given me.

 

Just to prove I am on the right track now, L has had a flu-like virus since Monday and was looking very sorry for himself this morning so I asked him what the matter was but as ever he just looked at me pleadingly. So, I picked up his Megasketcher and wrote "Tell Mummy what hurts. My _______hurts". He took it, thought for a moment and then filled in "mouth" and pointed down his throat!!!!!!! The doctor later confirmed he has a very sore throat! I cannot believe it, all this time with a child that could only communicate his distress or discomfort by crying and all we needed to do was use the one thing that was constantly under his nose - the omnipresent Megasketcher - no wonder he hardly ever lets the blessed thing out of his sight. Perhaps he has just been wiling us to realise?! Well the penny has finally well and truely dropped!

[Ohforaquietlife]

Well things have moved on since I last posted on this. I wrote a very long letter to the paed with a stack of information on hyperlexia and also copied to the head of speech and language for our area (thanks Badders for the proof-reading!!). The result was a big meeting with the two of them, the head of my son's Unit and us. Came away largely happy but wondering whose child he really was as it seems that others have more influence over his future than we lowly parents do.

 

Since then, a new S&L report has been produced listing and attempting to address all the symptoms of hyperlexia without actually mentioning the condition by name. Of course, the label is unimportant as long as the particular learning style is highlighted. Then today I was given a new IEP and, miracle of miracles, his hyperlexia has been acknowledged and is there in print

 

Remains to be seen if the new strategies will have the desired effect but I live in hope. Will let you know.

 

Ohf!

[baddad]

Then today I was given a new IEP and, miracle of miracles, his hyperlexia has been acknowledged and is there in print

 

Remains to be seen if the new strategies will have the desired effect but I live in hope. Will let you know.

 

Ohf!

 

 

 

That is WONDERFUL news ' hattie' - They ACTUALLY put it on paper!!!! Was that the infamous Dr S? Now, put your feet up, hobnob and cocoa and then tomorrow you can start making sure they actually IMPLEMENT it

Well done you, well done the wee fella, and Best to you and all the little titfers!

 

L&P

BD <'>

[Ohforaquietlife]

 

No, has been strangely quiet but I'm expecting the rate of diagnosis of hyperlexia round these parts to go through the roof!

[florrie]

Great news, I'm really pleased to hear this.

[Stephanie]

My son is hyperlexic without a doubt, he is an incredible reader. We are working on his understanding of the books he reads, he will get there, he takes most of it in now as it is. He is reading at age 9+ easily which isnt great as his school only goes up to 7 years so the books are not up to his level - typical.

 

Get the book "Babies That Read" about Hyperlexia, written by a mother with a hyperlexic son, there are some fabulous teaching methods in the back of the book. Get another copy for your childs school too as it is a really valuable resource.

 

This is such a great basis for learning, you really need to tap into their specialism. Savant skills usually go ignored in school, you have to work at bringing them into focus and utilising them.

 

Get the book - you read it and everything fits into place, like someone answered all your questions.

 

You can get the book on Amazon, it is from the US.

 

 

Any hyperlexics love board games out there?? My son loves them ... just wanted to share which ones work for us/you. Maybe I will post a separate thread.

[jlo9371]

My son is hyperlexic without a doubt, he is an incredible reader. We are working on his understanding of the books he reads, he will get there, he takes most of it in now as it is. He is reading at age 9+ easily which isnt great as his school only goes up to 7 years so the books are not up to his level - typical.

 

Get the book "Babies That Read" about Hyperlexia, written by a mother with a hyperlexic son, there are some fabulous teaching methods in the back of the book. Get another copy for your childs school too as it is a really valuable resource.

 

This is such a great basis for learning, you really need to tap into their specialism. Savant skills usually go ignored in school, you have to work at bringing them into focus and utilising them.

 

Get the book - you read it and everything fits into place, like someone answered all your questions.

 

You can get the book on Amazon, it is from the US.

Any hyperlexics love board games out there?? My son loves them ... just wanted to share which ones work for us/you. Maybe I will post a separate thread.

[jlo9371]

APOLOGIES, I dont know what I did to get that quote there............................sorry <'>

 

Must be my pc skills

[Stephanie]

Can someone explain or give examples of auditory processing ... I am not sure what it is and need to know whether I can relate it to my son or not.

 

Main problem we have is that he will read a book fine, long words, whatever .. then when you ask him to tell the story in his own words, he can't .. and if you ask questions about the story, his answers will be vague... but if you give him multichoice answers he always gets it right. He does a lot of guided reading at school with books without words to try and help him.

 

He goes for fact over fiction, like the highway code, or picture dictionaries, or books on flags or an atlas.

 

He does read Mr Men and things like that, but more for the pictures than the actual story.

[smiley]

http://www.apduk.org/

 

http://www.nidcd.nih.gov/health/voice/auditory.asp

 

another good one is....

 

http://www.afasic.org.uk/

 

 

Hope they help <'>

[florrie]

I've got hyperlexia and auditory processing problems, which were assessed by american speech and language pathologists at lindamood bell in London. There may be some sppech and language therapists now that understand this in the UK, my son has the same and was dx with semantic pragmatic disorder and autism and he has difficulties with expressive language.

 

Auditory processing problems are interpreted in different ways, but how it affects me is partly related to my difficulties with comprehension particulary with things like stories or anything that is an abstract concept I'm the complete opposite for things of factual nature have pretty much photographic memory for that.

 

I don't answer the phone unless it is someone I know very well because I can't follow directions or the conversation and I feel stupid. when I was younger I used to write everything down I was going to say and anticipate all the things I might have to reply too because I can't do it spontaneously because I can't process it, even though Ihear it and I go into rote responses, that to others may seem appropriate but I haven't actually processed what has been said, it is just over years, I've become skilled at masking, Ihave obssesive interests because that is the only way I process information in a way that makes sense and order of things and Ihave friends who have same interests, it is less of a problem then because i already have all the info although i still don't organise it properly. I'm 43 now and only dx 4 years ago, suddenly everything from the past made sense. The processing probs were less of a problem to me when I was young and became a problem once I went to secondary school because education was so auditory based and I could never answer questions and felt stupid etc, and that was begining of withdrawal anxiety etc for me which Istill have, because Ijust can't cope with things that other people can that rely on this eg things unexpected knocks on door phone calls conversations about things that aren't my interest because I can't participate.

 

I'm an adult and as I don't feel it was such a problem to me when I was younger before secondary school, age it is difficult for me to tell what to look out for, but hopefully the info on the sites the last poster posted should help.

 

The good news is auditory processing probs are treateable lindamood bell treat them with programmes, but they really understand it and although it is expensive and intensive in order to work,you can buy in a kit for about 100 dollars and do it yourself, well I can't do it my self but you could help your child. I t increases understanding which helps then all the other problemsthat accumulate.

 

the younger the child is the more successful the educational programme are and the older you are the less progress you make probably because neural pathways are so well formed, and they train them differently

Edited April 28, 2006 by florrie