Your honest opinions please

[claw3]

I have always received spot on advice here and im relying on you guys to help me make sense of this, if you wouldnt mind.

Bit of history, Ds has been seeing Paeds etc since he was 2 (now 5.5) after HV was worried about his speech and i was concerned about his extremely limited diet. We have seen Paeds every 6 months since (never seen the same one twice), no dx has been given.

In 2008 he saw OT, he has lots of sensory difficulties ie over responsive in all of his 5 senses, she verbally dxed sensory modulation disorder and also thought he was 'gifted'.

So having limited advice from the experts, when i got home i googled sensory difficulties and gifted and the search came up with Dabrowski's Over-excitabilites www.stephanietolan.com/dabrowskis.htm (if you can be bothered to read!) if not it basically says that 'gifted' children have lots of difficulties which are extremely similar to what ds displays.

I mentioned this Paed and she told me 'dont be silly its likely ASD causing his difficulties' So i forgot about this idea.

Next paed appointment (different paed) did a developmental check and i mentioned to her that previous Paed had mentioned ASD and she told me 'there is no way he has ASD'!

We recently visited bibic and i paid for a Ed Psy to assess ds, i have just received her report and ds scored extremely highly in all the tests and would be considered 'gifted', he also had the reading and spelling age of a 7 year old. Which has made me think about the theory again.

As i said ds has lots of sensory problems, he also has a slight speech delay ie hearing the differences between similar sounding words and SALT has stated he has problems with sequencing, his ideas seems very muddled etc, etc. He is also extremely anxious and this causes him quite a few problems.

Sorry ive tried to keep it short, so ive probably missed loads.

What do you think could ds's problems be caused by 'giftedness' or is it likely to be ASD or both?

I haven't really read into gifted children, as DS isn't showing any signs thereof, but I was described by teachers as "gifted". I strongly believe my social problems/anxiety/OCD were not related to the "giftedness" and were separate - I believe that if I was a child today I could probably have got an AS DX. I realise that sometimes kids' difficulties don't fit neatly into boxes, so the professionals dithering must be frustrating! I suspect that the sensory/anxiety is an additional issue to the giftedness.

Totalchoas, thanks for replying. I initially started to read about it in 2008, but didnt bother anymore when Paed looked at me as if i was mad and basically told me not to be silly! I find on mn, people seem to have a lot more experience and knowledge, than a lot of the experts!

Apparently sensory modulation disorder is quite common in 'gifted' children as are social, anxieties problems and OCD!

I know i should be focussing on getting ds the help he needs, but without a dx its bloody hard work. I am now worrying that if ds has now been 'labelled' as 'gifted' that a dx will not be forthcoming.

Im also worrying about school, they have been putting off giving him any help, until a dx has been given.

So im now having to explore the possibility of giftedness causing his problems, as SOMETHING has to be causing his problems to get any help if you see what i mean.

It's a difficult one to answer, I think. Ds1 (ASD) is very bright/gifted. His knowledge and ability in his favourite subject is usually described as being astounding or amazing.

In his particular case my instinct is that his difficulties are as a result of his ASD. I think that the mixture of the more positive aspects of his SN (logical thinking, hyperlexia and an ability to remember pretty much everything he reads) has led to his particular 'gift' rather than his 'gift' being the cause of his SN iyswim? So basically his ability is because of the SN rather than his SN being because of his ability.

I don't know if that will necessarily follow for all children though. I'm still trying to figure my eccentric ds2 out.

Hi Coppertop, my first thought when ds was putting together 250 piece jigsaws without even looking at the picture when he was 3, was wow thats amazing!

Paed then told me this was a sign of ASD and part of a disorder ie paying too much attention to patterns. So although i still thought wow, i accepted that this was part and parcel of his disorder.

Is the gift caused by a disorder or the cause of it has been the million dollar question for me.

When i have read about sensory difficulties and gifted children, it is explained as having over responsive senses has enabled the child to process much more quickly than normal, hence the giftedness.

Im officially confused!

Does your DS need / get any extra help at school? If you feel that he needs additional help, I'd push for an AS diagnosis! Many people with AS are gifted. I think your much more likely to get a statement with an AS diagnosis, and it's the help that's important, not the label!

Thanks Starlight, i was more worried that after being labelled as gifted, a dx might not be forthcoming, as oppose to an inaccurate one.

The school need something to blame his behaviour on, before they will give him any help. A gifted label will be another excuse not to give him any help, which is why ive been reading about the difficulties gifted children can have, just in case a dx isnt given and i need to fall back on it.

At the moment, i would take any dx just to get him some help. Being 'gifted' is not much use to anyone, if you cant cope with basic daily living skills.

I know the school have a responsibility to ensure all childrens needs are meet, but realistic this just isnt the case, especially without a dx and any academic difficulties

Hi tipsycat, in school he in on action +.

Does he get any extra help, no other than seeking the advice of outside agencies. He has recently been given 15 mins of SALT twice a week with TA. He is also in the 'special needs' group which has adult supervision for literacy, maths, reading etc.

What he actually needs as oppose to gets is a different story!

Dd1 is gifted (same age as your ds, reading age of 8, maths age of 7, great at art ect..), i always thought she was gifted because of the Aspergers, dd1 has always loved learning rather than playing or socializing which i put down to Aspergers.

The trouble is like claw3 said, being gifted is not much use to anyone if you cant cope with basic living skills. Dd1 maybe able to read a book or add large sums but she cant dress herself and struggles in social situations.

By academic difficulties, i mean he has no problems with anything non verbal, verbally its a different story.

its ab it of a chicken & egg thing.... many people on the Autitic spectrum are very able, maybe gifted academically.
Uni's are full of gifted academics that have very limited social abilities & sensory difficulties... is this the result of a sepesrate condition or are these people on the autistic spectrum who knows?

It is about looking at the person, if the sensory difficulties & asd type behaviour impact so much on their life then a DX is usually required in order to get the support.

You are spot on Claw gifted does not help with daily living!

Many gifted children do get HFA or Aspergers dx, i don't think one precludes the other.

Marne, ds is great at art too and he loves to learn!

Does your dd get any help in school?

I think Starlight is right. Meeting the needs is the important issue.

We had the same conversation after returning from BIBIC. DS (who is 7) has consistently been placed above 95th centile on IQ tests and his teachers recognise he is bright.

I understand that children with these problems who are also described as 'gifted' (which I think is a truly awful word!) is described as being 'twice exceptional'.

However, I have long since reached the conclusion that the whole dx business is a subjective pile of poo. People will read into it whatever they want the result to be so the dx is only important if it helps explain your child and gets them the support they need.

My friends are senior teachers and have a child who is described as 'gifted'. He has a whole host of social and communication, sensory, motor and other issues. They would never get him investigated because they like the label 'gifted' and would rather just ignore the other stuff. As long as he's doing ok at school, that's ok and this works for them. Whether it works for him, is another matter.

Anon, the school seem to be taking the view, that he is an intelligent little boy, so he should be able to use this intelligence to overcome his problems ARGH! adding the word gifted is like a nail in my coffin!

I have to say that the reading/spelling ages quoted seem pretty average for my son's Yr 1 class last year so the term is used very subjectively.

It may be that you need to push for a dx without the schools help.
Are his regular paed appnts with a "developmental paed", do you see the consultant or just one of his registrars?

dd does'nt get any help apart from help getting dressed for PE. She gets upset easily but the school has learned to cope with that by removing her from the room to calm herself.

Dd1 has been put with the year above to do maths and english so she is working with the 6-7 year olds which she loves.

We are starting to see more problems with the social side of things, she has a lot of friends but no close friends, other children get fed up with her as she is too verbal (never stops talking) and gets upset if she's not first at things (first in line, first to get dressed).

Hi Debs40, i have no idea of what is average reading/spelling age in ds's class to be honest.

Gifted is just another label to me, i just hope it doesnt prove to be a really unhelpful one!

Annon, all the Paeds we have seen up until this point have been community locums, hence had left by the time ds's next appointment, so very inconsistent.

I recently moved boroughs and the Paed we are seeing is another community locum, but we have seen him twice already and he seems much more on the ball and has really taken charge.

I would just take the approach of passing the report on and then bear the information in mind when next reviewing IEP etc.

I know from experience with my friends that teachers hate parents who think they know better than them and can really resent outside interference/intervention.

My experience also is that a crap school with teachers who think in this type of way (and I'm not saying yours is - I think mine might be!)will generally do little until advised by one of their own - their own EP, OT etc.

Did BIBIC test for underliying abilities too? This can be very helpful at identifying any deficits too. Two reports can be better than one.

Also, have you tried the Early Bird Plus course? I'm going on that with school next week and I'm hoping this will give them a better understanding of some of the issues.

Could be claw

You wouln't be the first who's had to dx their own child (I did).

Could you print out the info and hand it to the Paed. they must consider anything you ask them to.

Marne, ds is placed in all the 'bottom' groups, as this is the group for special needs and is supervised by an adult.

Ds also has real problems with getting dressed, he says it burns his skin. He doesnt eat in school. He soils himself. He has all kinds of phobias and anxieties. He also has trouble with verbal instructions and tries to guess at what you want him to do and often gets confused.

Debs40, ds doesnt even have an IEP, so i would say my school is pretty crap too! It feels like the school wont listen to a word i say unless i have expert evidence to back me up.

Even when i did have expert evidence ie SALT recommendation of 1:1 and they eventually agreed to it, they failed to put it in his IEP.

Yes Bibic did the underlying ability test and he scored extremely highly in that too. Thats the point though isnt it!, its underlying and without any help in place, he wont reach his potential!

You did mention Early Bird to me before, in November if i remember rightly and their offices were shut for some reason. I forgot to chase this up, i will give them another ring.

I will pass on bibic/ed psy report to everyone involved in ds's care

Wetaugust, print the info, do you mean what i have been reading?

"the school wont listen to a word i say unless i have expert evidence to back me up".

I hear you!! I have exactly the same problem. It's like getting blood out of a stone.

"its underlying and without any help in place, he wont reach his potential!"

Absolutely, but identifying this and the bature of the issues which prevent potential from being reached should help teachers help your son.

HOWEVER, I know that this is not necessarily the case and I know my son's school, despite being 'outstanding', will have to be force fed 'official reports' before they do a thing.

I am hoping that the Early Bird Plus course will give an ed psych an in to get some help.