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?

Debs, i suppose it is all about gathering evidence and recommendations, so if the school wont put any help in place, you can take it further.

Up until this point all i had was a SALT report and the school ignoring problems.

I suppose i have made some progress i now have bibic/ed psy reports (even if i did have to get them myself!)

God to think when i first started i thought, all i would have to do is explain what the problem was and help would be forthcoming

Must go and start some dinner, ds will be back soon.

Thanks for all the replies everyone, will check back later if anyone has any more good advice.

Yes - print the info on Dabrowski's Over-excitabilites and hand it to the Paed asking him/her to read it.

They must do. I handed sheves of stuff on ASD to our Paed to consider whether was ASD as i read somewhere that they must read everything you give them (which makes sense as they would be anxious that they didn't miss something and get caned for it later).

Worth a try.

I agree. Even if they don't agree, they can explain why and that might help clarify things as well.

Ok will do, thanks again.

Just to let you know, that with a dx, an AS child can make enourmous progress. My 18yo brother was dxd AS at 6yo. He didn't attend full time school until he was in Y6 (he was HE'd for 2 yrs by my mum, then went back half days for Y3/4/5). He went into Y6 with a full statement for all day 1-2-1 support, that stayed with him until he'd finished 6th form(Y12/13). He got 11 A, 3A's & 2B's in his GCSE's, he got 3A's and a B for his A levels, and is now at Norwich Uni studying Natural sciences. It all depends on the LEa though. MY* DD & DS2 are in a different LEA to the one my brother was in, and their dx's hasn't made that much difference they just don't get enough help. .

Thanks Loudlass, well done your brother for doing so well.

Pushing for a dx seems to be the way forward in order to be taken seriously and get some help.

Hope so, just wanted to let you know that a dx isn't all doom and gloom. .

Morning Loudlass, is that how i came across, oh god that wasnt my intention!

Perhaps i didnt explain myself very well, paeds seem to have had different opinions, one telling me ASD was 'likely', the other telling me 'no way' and i wondered what you guys thought.

My concerns are how ds is going to get any help for his difficulties, if he doesnt receive an ASD dx or if they decide to put it off until he is older, especially now the word 'gifted' has been used. Hence looking into the difficulties 'gifted' children have, in case i need to fall back on this.

Everyone seems to be waiting on a dx or something to blame his behaviour on, before any help is given. Although this shouldnt be the case, i have found it extremely difficult to get any without one.

Starlight, i dont want an accurate diagnosis, sorry im obviously not putting my point across very well. Just a diagnosis and if i cant get a dx, to work with what i have got a gifted label.

The school have been waiting on a dx (they have limited knowledge and training of ASD and would like to use ASD outreach, which they cannot do without a dx) I would like the school to put some visual sequencing, timetables etc in place, they will not do this as 'ds is an intelligent little boy, who can work it out for himself' type of attitude.

Now if the pead doesnt give ds a dx, i then have to prove to the school that ds's difficulties are as a result of something, especially now the word 'gifted' has been used, the school will see this as backing up their theory 'ds is an intelligent little boy, who can work it out for himself'.

I have been reading about the difficulties gifted children experience and how similar they are to ds's difficulties and was hoping that if paed cannot or wants to wait to dx, that he will at least back me up on the gifted theory.

Does that make sense?

The paeds we have seen up until changing boroughs have done exactly what you stated in your earlier post, referrals and waiting lists, then left. My appointments with them were like a visit to my GP 'yes what can i do for you today!'

OT seemed to understand ds's problems extremely well, but then she disappeared 'long term sick' and no report has ever been written.

Dietitian cant help because its not a physical problem.

I have been pushing for a dx, but reports available to new Paed are very limited. Other than a recent SALT report, its just been my word. I now have a bibic report and Ed psy report which i got myself and in all tests ds scored extremely highly, which doesnt reflect too well on his actual problems.

Yes, he might be 'gifted', but finds getting dressed painful, water painful, tastes intolerable etc, etc and there is no evidence of this in a report, other than mum says. So the label of gifted is of no use to him or me, unless it can be used to our advantage.

Ideally if i could get a dx, i wouldnt need to go down the gifted route at all.

no idea if helpful to your DS, but google 'retained reflexes' and see if any of the things mentioned are things he experiences. if so find sensory trained OT and get exercises to help integrate reflexes.

no idea how it works, but has helped friends son. this led on to doing 'therapeutic lisetning' through the OT which was also helpful = he was far more connected in to things. NB both things took a few mnths to show results.