Not sure how to play this?

(12 Posts)
Bergitte Sun 18-Nov-12 23:20:01

Hiya, and apologies for the long post...

I'm worried because my son (5) has just started school and everyone's struggling sad

To contextualise, we think he's HLP (and wish he wasn't).
I'm beginning to realise I was "gifted" as a child - my Mother always claimed this but as she has mental health issues I didn't really believe her. I was a really early talker who taught myself to read at 3, saw ed psychs who didn't put me up a school year as I was emotionally backwards etc. I had rubbish social skills, struggled to fit in, day dreamed though school and underachieved significantly. However, I'm managed to find my niche in the world now.
DS has always been very alert and demanding with a developed sense of humour. He was always able to focus for an unusally long time, has an amazing memory and asks endless questions. He knew colours and numbers at incredibly early age ie counting to 1000 plus and solving mental maths problems at 3 and has taught himself to read before the start of school. He has a number of sensory difficulties which also fit the profile.
He struggled at the start of preschool but settled really well after a few months. His reception teacher noticed he was having difficulties early on. These have included huge anxiety, regular meltdowns if things go wrong, distress at loud noise in the classroom, refusal to go into the playground and some unfortunate incidents of hitting/biting which have thankfully stopped.
We're taking him to the GP about his ears and hoping to get an OT referral. She's promised to get a school referral to educational psychology and the behaviour team which we've agreed to although we feel it's early days as he's been at school a matter of weeks. After some research I learnt about HLP and printed off loads of literature which she agreed looked really relevant.

However, she's now saying that the school want the ASD team to come in to do an assessment?? We're beyond upset as we're worried about misdiagnosis. Our son has friends and has always interacted socially, he's loving and incredibly affectionate, makes eye contact, has appropriated conversations, a sense of humour and is relatively flexible at home. He has dreadful meltdowns too but not the behaviour that school describe.

My DH wonders if this is a funding issue. Of course we'll have to accept it if our son has ASD but surely he should be seen by Educational Psychology first? Should we push the school to do this or seek advice privately? I really think the school think we're in denial but I want to explore every avenue before exposing my son to this assessment.

Does anyone have any wosdom to offer? Huge thanks smile

exexpat Sun 18-Nov-12 23:24:50

What's HLP?

ErmahgerdBlahdyCold Sun 18-Nov-12 23:37:31

I've even googled HLP as I was wondering that too. In this context I'm fairly certain it's not Hyperkeratosis Lenticularis Perstans, Familial type III hyperlipoproteinemia or hind leg paralysis so I'm a bit stumped... confused

Bergitte Sun 18-Nov-12 23:57:58

Higher learning potential - it's what was "gifted".
The NAGC (National Association of Gifted Children) now use HLP as a lot of people dislike the label gifted.

Thanks for your useful suggestions though...

exexpat Mon 19-Nov-12 00:24:30

OK, I see. Always a good idea to say what acronyms mean if they are fairly recent - I hadn't seen that one before.

But I think the gifted/HLP thing is a side issue. Your DS is showing some sensitivities and behaviours at school which can sometimes be associated with ASD. They can also be associated with some other things (dyspraxia, sensory processing disorder etc I think - I'm no expert). All those issues can also exist alongside being 'HLP'.

I don't really see what the problem is with having him assessed by the ASD team. Presumably they are experts in ASD, so if he does fit the criteria for a diagnosis of being somewhere on the spectrum, they will spot it; if he doesn't, they won't, and he may be referred for other assessments. Or are you assuming that the ASD team hands out ASD diagnoses to every child they are called in to assess? I can't see why that would be the case.

For what it's worth, my DS is also 'HLP', and also showed some signs of sensory issues at that sort of age - extreme sensitivity to noise, lots of problems with personal space/touching (haircuts and dentists visits were a nightmare, even cutting toenails; all labels had to be cut out of clothes etc). He also had strong obsessions with things like trains and did some other things which occasionally made me wonder about ASD, but those things have mostly faded over time. He's now 14, and I think would meet the criteria for a diagnosis of (mildish) dyspraxia, though he has never been formally assessed.

But I think if someone had offered me a referral for assessment for ASD when he was 3 or 4, I would have accepted, because the benefits of getting a diagnosis - and therefore being able to get appropriate support - would be worth the small risk of misdiagnosis.

If you have read any of the threads on MN about the battles people have had to get ASD diagnoses for their children when they know that something is wrong, you'll realise that diagnoses aren't handed out at random to children who clearly don't have ASD.

Bergitte Mon 19-Nov-12 01:10:57

Thanks exexpat

I'm just in a state, hence not being able to sleep. I guess I don't want my son to have these difficulties (whatever they are!), it's hard facing up to what might be going on...

He's our only child as we went through infertility and his twin brother dying. I guess I (unrealistically) hoped we'd be cut a bit of slack but I know life doesn't work that way :/

Really hope your son is doing ok and thanks again for replying smile

When mine was little the school suspected ASD except it wasn't called that at the time (back in the dark agees) and now I know a bit about it I can see why - he didn't like loud classrooms and playgrounds with lots of kids freaked him out completely. He isn't on the autistic spectrum at all but it is called a spectrum for a reason and some of the characteristics of the disorder are shared with other specific learning difficulties and lots of these things happen in clusters anyway.

It turned out that my son had something akin to dyspraxia and probably dylexia as well. If you are offered some help at this early stage and the school are supportive then go for it.

exexpat Mon 19-Nov-12 10:01:34

Bergitte - I can see that you might be a bit protective and inclined to worry about him, given what you've been through, but I think co-operating with the school and taking any assessments or help you are offered is probably the best way forward, rather than refusing to accept the possibility of ASD to the extent of blocking an assessment. As you can tell from my story and greenheart's, plenty of children can show some ASD-like indications without actually having it.

My DS is fine now, by the way - he's grown out of most of the sensory issues (eg has no problem with loud noises - he is now an avid gig-goer), the other dyspraxia-related problems are less of an issue now he has been allowed to give up anything requiring good fine-motor skills and co-ordination (art, DT, rugby etc), and although he still has a few quirks, they can actually be advantages when combined with his intelligence.

Bergitte Mon 19-Nov-12 12:16:56

Thanks green and exexpat

really useful to hear others perspectives re their children getting through these sorts of issues successfully. Am glad your boys are ok and you've all survived!!

I'm actually an SEN teacher myself and am certainly not "blocking" an assessment for my son. I guess we're both reeling and processing the whole idea as we'd never considered there was anything wrong much with him before he started school mid September. I keep thinking I should have spotted something but I work with teenagers so I guess not!!

The email about the assessment only came last night from his teacher and am talking to a few colleagues/contacts before we forge on. I posted cos I couldn't sleep for worrying. Just wondered if it should be an ed psych in the first instance and then ASD?

Anyway, am guessing it's just good that the school are supportive. Also I think I'm on the wrong board and should be on the SEN one smile

Thanks again for your help

gfrnn Tue 27-Nov-12 23:07:57

From what you describe, I think to conclude ASD would be premature. There are alternatives like Dabrowski's Overexcitabilities which match several features you describe like distress at loud noise but need not indicate ASD. I would try to find an open minded ed psych and let them assess.

blackeyedsusan Tue 04-Dec-12 23:25:55

they thought dd was asd too... due to the toe walking. and possibly OEs toe walking is due to hypermobility though.

ds on the other hand is going for asd assessment.. and it does look like he has it. it is quite difficult to go through the process and get a diagnosis. you may have to go for several appointments before they rule out/in, but it is best to know if he has.

Niceweather Wed 05-Dec-12 17:48:21

Here's another one who had a DS suspected of having Autism/Aspergers. We paid for a private CP who said he was HLP and this led us to also discover that he had dyslexia. Have a look at this book, it was recommended by the NAGC:

books.google.co.uk/books/about/Misdiagnosis_And_Dual_Diagnoses_Of_Gifte.html?id=NQrtt-peg5AC&redir_esc=y

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