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Anyone have a formal diagnosis of Hyperlexia for DC?

(23 Posts)
MummytoMog Wed 31-Oct-12 16:05:42

DD is three and two months and has been in speech therapy for about eight months now. They have right from the start been very concerned about her social behaviour (we are less concerned). She’s always lagged behind her peers in attaining her milestones, but has always caught up and we have assumed that talking would be the same. For example she made absolutely no effort to walk at all until she was sixteen months old and then got up and ran across the room. She was unstoppable from there on in. She had a difficult birth, was a forceps delivery and was starved of oxygen briefly towards the end of labour. Her apgar at a minute was five, but it was nine by five minutes, so she bounced back very well and we were told not to worry especially about it.

We’ve not had a brilliant relationship with the SALT team, partly because our first speechie was a bit of a personality clash with me and partly because she insisted on seeing a problem with every single facet of DD’s behaviour. DD loves numbers – problem. DD can read – problem. DD can sing whole nursery rhymes – problem. DD is great with strangers – problem. DD loves to dance – problem. I’m not denying that her lack of expressive and receptive language is a problem, it clearly is and we want to help her with that. And if she is somewhere on the autistic spectrum, then I want her to have the best possible help. But how I feel right now is that she is being judged on things that would be completely ignored in a child who hadn’t been flagged as possibly autistic.

For example, DD has some pretty spectacular crying fits, maybe once a day, if she is denied something she wants or if DS (20 months) makes her cross by stealing a toy. She had one while we were in therapy (DS had unavoidably had to come along and snatched her toy) and speechie just kept going on and on about it. Even though DD snapped out of it in about three minutes with a reassuring cuddle. But in any other toddler this would just be toddler tantrums.

Anyway, I digress. The point of the whining about the speechie is that we don’t really think DD fits the profile very well. I did the MCHAT test for her in July when the speechie first referred us to the educational psychologist (who we haven’t seen yet) and the result was high risk for autism. I did her again yesterday, and she was no cause for concern. I’ve been doing a bit of reading around the subject and came across hyperlexia. DD fits a lot of the diagnostic criteria, but it strikes me that it’s a bit of a fuzzy thing to diagnose, and that a lot of the symptoms are very similar to ASD or that it can be a splinter skill in autistic children. So I’d be really interested if anyone has a formal diagnosis, how this happened, whether your child is on the spectrum etc etc etc.

zzzzz Wed 31-Oct-12 16:15:30

She sounds like a bright child with a language disorder. The problem is that most language disordered children have lower IQs and so if you have a higher IQ your peers are more likely to have ASD.

My ds presented very similarly, he now has lots of ASD type traits (7), though s suspect this is as a result of his disorder not the underling cause.

Does a diagnosis of ASD get you access to any more services? Does it restrict your access to services (here you lose SALT hmm)?

MummytoMog Wed 31-Oct-12 17:04:54

We have wondered about some kind of pragmatic language disorder or something, but she has this slightly sneaky habit of coming out with full, grammatically correct sentences unexpectedly. She parrots lots of sentences and uses them roughly appropriately (so she refers to herself in the third person as a rule, she will say things like ‘come on mummy, let’s go’ but she when upset says ‘what’s the matter’ rather than ‘I’m sad’). What she will do is use new and appropriate sentences when extremely frustrated. We’re also a bit suspicious that she has more receptive language than she lets on after a couple of incidents.

SALT are concerned with her social skills. She isn’t remotely interested in children her own age unless they get in her way, but is quite fond of older children and very keen on adults. She doesn’t point to show interest, only to ask for things. She isn’t potty trained (although she is dry at nursery and at night). She does answer to her name but only when she feels like it.

At the moment, I think nursery are pushing for more funding, they have said specifically for an extra assistant to take DD to the toilet regularly (I put her on the potty every twenty minutes when I’m having one of our periodic potty training weeks. Makes no difference). They wanted to refer her to early years support, but she has already been discussed at the pre-school liaison group, who have arranged for the Educational Psychologist to assess her at nursery next week. I don’t know what the point of this assessment is, other than to put in place an individual educational plan for DD.

I’m aware I’m not handling it brilliantly. I can’t help but take everything they say as a criticism of me personally (not helped by MiL telling us that DD would talk if I hadn’t left her on her own so much, let her watch TV and let her play on the ipad). We’ve always loved how independent she is, and how quirky and now it feels like every lovely thing about her is being treated as a ‘symptom’.

zzzzz Wed 31-Oct-12 17:22:47

Language disorders caused by neglect are caused by extreme neglect, not telly and iPads. Tell MIL to fuck off....ok that's probably unwise, give her a shitload of research and ask her to read it. Repeat whenever she opens her mouth.

It isn't cased by telly, as you very well know. Might as well say someone became gay because their mother cuddled them too much. Ignorant nonsense.

Everyone treats everything as a symptome. Hold your nerve and concentrate on what YOU think. You know her best.

Potty training will come.

I like my little man. He is a little nutty, but that's ok with us, and we live with him. grin. Remember to enjoy her too.

AgnesDiPesto Wed 31-Oct-12 18:44:41

DS did a lot of that eg reading early, knowing whole songs. He has moderate autism. His expressive and receptive language is very delayed / disordered. You might want to read one of the books on ASD in girls as it can be quite different. But you are right lot of language disorders do mimic autism and the autistic symptoms resolve when the language improves. DS was typical to 2, then regressed and over the next year he became more and more autistic and in girls often the signs become obvious later.

I would also say I have yet to meet a NHS SALT who knows anything about autism so I can understand your caution. I also think that most parents know their child best and should trust their instincts. ICAN does very detailed assessments (over 2 days) which many parents have said gave them answers. They are not cheap but may be worth thinking about further down the line if you are still unsure.

DS does not have hyperlexia he just rote learns incredibly easily. I thought initially he may have this, but I think he just has an amazing memory.

A private SALT may also be worth a go if you can afford it, NHS SALT is pants in my experience.

Nothing that is done for children with ASD is harmful - its not like invasive medical treatment, so in a way its not the end of the world if they use some asd strategies.

babiki Wed 31-Oct-12 20:14:24

Hi, I feel for you, my ds is also being pushed into the Asd diagnoses by Nhs stuff (OT and physio)..I had him assesed twice by private specialist in early autism who is adamant he is not on the spectrum, I am quite sure too. It is very similar to what you are describing; whatever we say about ds is translated into asd symptomes. On top of it the Nhs therapists that push me in this direction from the start are useless at their jobs and what they call 'therapy' it's a joke anyway. DS has GDD and is delayed in everything, however his 'asd like' behaviour (opening and closing doors..) is caused by the delay and his language is delayed, not distorted..if they ever saw him playing with his siblings or other older kids..And it's funny as I think they regard me as mother in denial smile) whilst it was me having private ASD assesment done more than a year ago! Ds is booked for Ados in 2 weeks, but know not sure if we should go, as what I have heard about how the test is done in here..hmm not impressed.
To your question though; never heard of anyone actually having the diagnosis of hyperlexia..

babiki Wed 31-Oct-12 20:19:46

Yes, I forgot to mention, the way we work with ds is similar what we would do if he was asd, so there's no harm in that...but if somebody is not on the spectrum, he is not, if you know what I mean smile
Altough my silly DH said (as a joke) it would sound cooler to say ds has autism than ds has learning disability (can't do the smileys but imagine half shocked/half laughing one)

ArthurPewty Wed 31-Oct-12 21:00:17

Message withdrawn at poster's request.

dietstartstmoz Wed 31-Oct-12 21:41:31

Our Ds2 has a diagnosis of high functioning autism, and he is absolutely 100% HFA. He is now 5, but at age 3.2 he was very similar to your DD-he loved numbers and could count to over 100, and was always reading out numbers if he saw them, he could also read very well, completely self taught by age 3, and DH and I think he has hyperlexia but we have never had a diagnosis, and this was a huge red flag to his SALT then, he was also great with strangers and still is, he will go up to anyone and talk to them -adults usually although he is now starting to speak to kids a little but he has always spoken to anyone, again, a huge red flag-he has no social awareness of appropriate behaviours, he will point and shout out at anyone, he will ask people why they are fat/bald/have tattoos/have different coloured skin etc, very loudly with no shame or awareness of what is appropriate and what is not (hopefully we can work on this one!), he also loves to dance and will dance anywhere and everywhere, his own unique freestyle dance, in the middle of HMV, shops, supermarkets etc, with no awareness that his enthusiasm is funny to others. The only difference perhaps is DS had significant speech and language delay, and at age 3 was talking mostly using a range of phrases and sentences he had learnt, and used them whether they were appropriate or not to the situation. He has 2 SALT staff at pre-school age and one was lovely, and one was not and I didnt get on with her. I always remember the nastly one saying "kids like DS...." and I said "Autistic" and she said "yes" and I just sat and cried as she was the first person who actually said the word. They also wrote a report highlighting that DS's difficulties were typical with HFA and when he was DX we had a quick chat with the pead (2nd appt) and she looked at the SALT report and confirmed he was HFA, no MCHAT, no ADOS etc, that was it for us.
I think it's best for you to keep an open mind, ASD can be hard to diagnose, girls do present differently to boys, no 2 people with ASD are the same, etc etc, and all of DS's 'quirks' etc were in fact signs of HFA. If she does have a DX there is nothing you could have done to change that, your MIL is talking crap. Be kind to yourself and just grit your teeth with the SALT, etc, I hated all these bloody 'professionals' coming into out life and I felt they were judging me as a parent and I really resented it.

MummytoMog Wed 31-Oct-12 23:42:08

Thanks for all the responses - girls are tricky I know, and pretty good at mimicking neurotypical behaviour, so this could be just wishful thinking that everything will resolve.

I don't know if the speech therapy we've had (an assessment and four sessions) has helped or not. At her initial assessment in June, Imogen basically wouldn't say anything. The nice speech therapist got her to say bubbles pretty easily, and we've used rote learning since then to get her to ask for things. A year ago, DD didn't talk at all, not one tiny little bit, so she's made massive leaps to single words about four months ago and now she's using sentences, but they're short and generally just copied from us/CBeebies. Her nasty speechie wanted us to do PECS, which we decided against as she was coming on in leaps and bounds and we wanted to carry on as we had been doing.

Her initial assessment just talks about the lack of speech, but says that she has good play skills and interacts well with us, so it was a bit of a shock at her first session that the therapist was so negative about her behaviour generally, and particularly concerned about her interaction with us and lack of eye contact. We have never had a problem getting eye contact from her, but she didn't at that point respond to her name. I spent a morning with a box of Maltesers getting her to respond to her name, and then rewarding her and now she will always respond to us, and mostly to other people unless she's very engaged in something else.

We have a new therapist next week, so hopefully we'll get a different viewpoint on DD from her, and the educational psychologist the week after.

coppertop Thu 01-Nov-12 00:14:25

My ds1's Paed flagged potential hyperlexia during one of his appointments, but the official diagnosis is ASD.

Ds showed signs of being able to read from around 2.5yrs or so, but didn't really talk until about 6mths later. He could type words on the computer and would blurt out random words that he read on signs etc.

The hyperlexia concerns were raised in relation to him reading at school, and making sure that staff were aware that ds was unlikely to understand the words he was reading to them.

ArthurPewty Thu 01-Nov-12 07:51:26

Message withdrawn at poster's request.

MummytoMog Thu 01-Nov-12 11:48:37

One of the things that worries me is that I get the impression that ASD in girls is generally missed by SALT/teachers. We've never sought a diagnosis of ASD - people just don't stop mentioning it though. Does this mean she's severly autistic? Or that we've just come into contact with very sensitive people?

If DD had started talking six months earlier, we would never have bothered with speech therapy (and would have saved ourselves months of worry), and I don't think anybody would think DD was anything other than a bit quirky and not keen on other children. I wasn't keen on other children. My best friend when I was four was three years older than me. Nobody suggested I had ASD, although I had a lot of the same 'quirks' as DD - early reading, standoffishness, ignoring the world around me, difficulty picking up on social cues, perfect pitch, wilful. The difference is that I talked at a basically normal age so my mother wasn't pressured into taking me to a speech therapist.

Sorry, self-pitying post again. Wish I could just stop speculating and worrying and just enjoy having a wonderful DD who is brilliant fun. Last night we were playing one of her favourite games, where she puts a duck on my head and I say 'why is there a ducky on my head' in a really weary tone of voice (the tone of voice is v. important to her). Then she put a fox on the cat's head and said 'Fox on cat head' and I put a pirate on her head and she said 'pirate on Imogen head'. Sounds boring, but really the best game ever and makes us both laugh so much.

ArthurPewty Thu 01-Nov-12 11:59:31

Message withdrawn at poster's request.

zzzzz Thu 01-Nov-12 12:12:07

ASD is quite a specific diagnosis.

It's quite possible to be very severely disabled by only one or 2 of the triad (or however many it is now) of impairments.

I feel the " is he /isn't he" discussions sucked up huge amounts of time and are pretty pointless.

The SALT can tell you about communicating, others can tell you about behaviours or rigidity, only the whole picture could tell you if it was an ASD. For less medically minded people (senco's etc) I would ask yourself (or them if you are feeling arsey) if they could name 5 developmental/neurological disorders that aren't ASD.

Rainman has a lot to answer for (and the guy Hoffman researched with didn't have Autism hmm).

Hyperlexia, is only part of who she is, as are language delays. Find people you like to work with you. Bring her up as you see fit, even the experts are pretty ropy.

Read Mensa's description of a hi IQ child and then a description of AS or HFA.

ArthurPewty Thu 01-Nov-12 13:13:12

Message withdrawn at poster's request.

EllenJaneisstillnotmyname Thu 01-Nov-12 18:45:31

I thought hard about replying to this one, but your DD sounds so much like my DS2 at the same age, that I had to respond. He was great at numbers, shapes, colours, anything concrete really. His first words were circle, square and triangle. He had a great sense of humour and my relief at his independence after his clingy/anxious older brother dS1 was enormous. His speech was delayed, but so was DS1's, so I wasn't really worried. He was very active, and loved cause and effect toys, could play with them for hours. Loved opening and closing doors, switching switches etc, playing on the computer. He loved action songs and was addicted to Fun Song Factory on the TV.

We saw the SALT as he wasn't really speaking and attended a clinic with other DC. He loved the toys but would only do his own thing, wouldn't join in games of rolling a ball etc. The SALT asked me how concerned I was by his development on a scale of 1 to 10, with 10 being very concerned. I said 3. She felt that perhaps I should be slightly more concerned and suggested I get him assessed by my HV. He was DXed with ASD at 3.6. He is atypical but I have no doubt he has ASD. He could read before he started school, his reading was only a few weeks behind his speech.

Not that I can DX your DD! But keep an open mind. It was your phrase, all her positives seem to be symptoms that I remember saying myself. sad

cozzie Thu 01-Nov-12 21:57:59

Your DD sounds very much like my DS1 too. He was counting backwards from 100 at 3 and taught himself to read by watching the subtitles on kids' TV programs. He also had a speech delay.

We went to see an NHS SALT who was absolutely useless and in the end we went down the private route. We began noticing other behaviours too - he would become obsessive about lining up jam jars, cars etc, not making eye contact and would only eat crunchy foods etc. To cut a long story short, he was finally diagnosed with Asperger's just after his fifth birthday by a neurodevelopmental paediatrician.

I can't diagnose your daughter either but you might like to have a look at When Babies Read by Audra Jensen on Amazon which I found really useful. Not all precocious readers have ASD but a lot of kids with ASD do read early. And yes girls certainly present differently.

DS1 is 6 now and although he struggles to infer meaning from context when he is reading, he is bright, eminently teachable - like most Aspies - and is doing really well. The early fascination with numbers has developed into a real love of maths and while I wouldn't necessarily say that he was a natural mathematician, he is a good one! So it's not all doom and gloom though I suspect there may be a few more challenges ahead.

Handywoman Fri 02-Nov-12 10:25:54

Dear Mummytomog

Your post really reminds me of where I was when dd was 4 and at nursery. dd has always been quirky, independent and full of fun. But would have the most amazing 'melt-downs' which would happen particularly if I turned my back and walked more than about five paces away from her. Ditto if something went wrong - tantrums could only ever 'burn themselves out' and be solved only by a cuddle. Her language started to develop normally but by age 3.5 was severely delayed. I tried to address this with nursery who kept telling me they were 'sure she was on some kind of spectrum' ie they would say everything BUT the word autism(!) I felt it was not their place to say such a thing and it made me very, very, angry. I tried to focus my concern on the language problem, which was my most pressing concern, but they just kept telling me that she was autistic (but without saying the word 'autism' grrrr).

At this point we engaged a private SaLT who was (and is) amazing. She diagnosed my dd's severe receptive and expressive language problems. She acknowledged that some parts of my dd's behaviour needed evaluation by a Paed but never ventured anything more than that. This is the right way to do things! And I felt as a result that she was really on my side. It makes such a difference. A referral to the developmental Paed was made (by the HV) on this basis, and we commenced private SaLT whilst awaiting evaluation.

Meantimes, the nursery received a copy of the full report from the private SaLT. It happened to mention that dd breastfed for 3.5 years (believe me I am not a lentil eating birkenstock wearing tree hugger either - dd just has always needed close physical contact +++ this was part of that). The nursery also had the b*lls to mention this and make me feel like I was a freak and maybe this was why my dd is 'too attached to me' and therefore having such massive tantrums. This did not help my relationship with the nursery!

So, the evaluation by the community Paed came along, by which time dd's language had progressed massively and she was in reception and accessing the curriculum well with support from a fantastic teacher (with experience in special needs). So the formal assessment for ASD never happened.

Fast forward to now, dd is aged 7 and her language skills are above average, but her quirkiness and her social communication is still problematic and her understanding of non-literal language/conversational skills are markedly discrepant, at the first centile. And guess what.... she is being formally assessed for ASD in the summer!

So, the moral of the tale is probably that concerns need to be raised and handled appropriately by teachers and therapists (ie flagged up and referred to the right people) rather than constantly speculating about a diagnosis which is outwith their scope of professional practice (even through they might actually be right). Parents need to be gently nudged in the right direction, because it is a diagnostic journey that can typically take years................

Sorry this is so long. Hug from me.

And btw your dd sounds lovely.

HW x

MummytoMog Sat 03-Nov-12 09:51:21

Thank you so much for your posts. Our first speech therapist spent the whole of Imogen's first appointment (her assessment was done by a different therapist) hinting that there was something desperately wrong with her. It reallly upset me, we very nearly didn't go back at all. We did, just so I could straight out ask her if they thought there was something else playing a factor other than a speech delay, hoping for the answer 'no'. She said yes, but wouldn't be drawn on what. That was a few months ago, and they've been a pretty wretched few months.

ArthurPewty Sat 03-Nov-12 13:08:46

Message withdrawn at poster's request.

Ineedalife Sat 03-Nov-12 13:21:20

You are right mummy, ASD in girls is often missed but your LO is lucky because she has you and you are going to fight for her to get her needs met and get her the support she needs.

When I was in a similar place to you with my Dd3, not knowing whether to persue and diagnosis or not someone on here told me to see a diagnosis as a signpost not a label. The signpost points people in the right direction to support the child and meet their needs.

I think the fact that people are mentioning ASD to you is likey to mean that you have met some people who have a good understanding of what "red flags" for autism are. It doesnt necessarily mean that your Dd has severe autism.

Remember, you are your Dd's best advocate.

Good lucksmile

Tinak1222 Tue 08-Dec-15 23:08:32

We got a formal hyperlexia diagnosis at age son went through 2 days of educational testing. Yes, the diagnosis is tricky, but our pediatrician and neuropsychologist who confirmed the diagnosis were adamant that he wasn't on the spectrum.

The SALT we saw put him in a social group. That was the best money and effort we ever put forth. They made the kids role play social situations. If something happened at school, I would share it with his SALT and they would role play it with the group. My son learned conversation skills and stopped having meltdowns at school.

My son is now 8. We have not been called in for any additional meetings with teachers other than the standard conferences for the past two years.

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