What does your AS diagnosis say?

[sugarcandymountain]

I've received a paediatric report - took DS to a private specialist as I was concerned that he was showing signs of AS and getting nowhere with NHS. After five pages of history it concludes that

"DS presents with clear evidence of impairment in the development of social understanding and interaction associated with evidence of cognitive rigidities and tendency for a highly specialised intellectual interest. The overall picture is consistent with an autistic spectrum disorder and he would fit the profile of Asperger Syndrome. His sensory issues and relatively poor fine motor skills would be consistent with this."

When speaking to the specialist, she agreed that she did see his problems as due to AS although I'm not sure she used the word 'diagnosis'. The problem is, DS has had a previous assessment from a psychiatrist who diagnosed him with Post Traumatic Stress Disorder and specifically said she didn't think he showed any signs of autism (after basing her assessment solely on a 1:1 interview in a quiet room - he had no problems in that situation!).
So my GP is now being unhelpful as he is supporting the PTSD diagnosis and is perhaps less supportive of the AS report as it was done privately. The AS report was also dismissed by our consultant (at the centre which referred him to the psychiatrist) as it 'wasn't a diagnosis; it just says he 'fits the profile'. I was hoping our GP would refer us to more specialist help with ASD resources/help in our area, but he spent the time talking about how 10yo boys have growing brains and eventually grow out of that kind of behaviour!

So I wonder what does the report have to say in order for it to be really clear? Should it say 'DS has Asperger Syndrome'? I think his PTSD report says 'DS suffers from PTSD'.

I'm wondering whether I ought to go back to the paediatrician to get a clearer report, but obviously that's going to cost. We went for an assessment at Bibic last week which was brilliant, and they definitely encouraged me to push for a clearer diagnosis - for statementing, DLA etc.

why don't you phone the person who prepared the report and explain how your GP is interpretting it.
they may amend/re-word for you.

Personally I read 'fits the profile of' as the same as 'is'.
I think your GP will be difficult even if you get a diagram from what you say - but GP may not be the best resource as issue is now more LEA, social worker etc isn't it
What are your LEA doing to help? Are you pushing for statement already?

Most of the resource that have been helpful to us have been via the lEA/school etc ( except prescription for gfcf food)

Thanks pagwatch, that's a good idea.

We don't have a statement yet, we have applied and waiting to hear. I probably need to get hassling them again! His school doesn't seem to have a view one way or another - they want to leave it to the professionals to make a diagnosis, and it's not really helping that they're disagreeing.

We haven't had any contact with Social Workers - I'm not sure how to go about doing that. Would I call them myself? I feel a bit stuck after the paed report - don't know where else to get support except through GP and NAS.

you need to get further clarification. We had a problem with DSs assessment as it was done by a visiting specialist who did the ados and the adir test with DS. DS scored in all 3 areas on the ados very highly meaning he has ASD but on the ADIR because it has different scoring he scored high in 2 areas and low in one leading the specialist to a DX of atypical autism. When the pead got the reposrt he took the lowest dx and failed to mention the parts where ds scored very highly in the ADOS part of the assessment. We now get the whole report included in DSs statement rather than the letter confirming DSs diagnosis.

Thanks all. All the things like parent support groups, advice etc I thought would come via my GP. I've already given the school a copy of the first report but I will ask for a clarification to get things watertight. I'm already expecting a bit of a battle as it is with the statementing.

Before you see the Paed, try and get info on LEA policies regarding what they require for access to various resources.

We recently had DS assessed and whilst it was inconclusive, the clinical psychologist said he always checked which LEA a child fell under. For some children with AS, he will put high functioning autism as for some reason that is required to access services that would not be available to a child with a diagnosis of AS. Sounded ridiculous to me but worth bearing in mind.

Sorry if this sounds a bit of a ramble.

good point myredcardigan, My LEA (leicestershire) would only accept a dx of Autistic Spectrum Disorder to allow DS to access help, BUT Leicester City Council would provide the support if it was stated that the child needed that support (ie no DX needed!) We found that because our local CAHMS is based in the city council they did not want to DX asd and instead dx ODD which didnt help in Leicestershire county council!

DS1 - "(his) constellation of difficulties with social reciprocity, usage of language, preoccupations and sterotypies would fulfil criteria for Asperger's or higher functioning autism spectrum disorder with no other associated comorbidity at present."

DS2 - "(he) meets criteria for higher functioning autistic spectrum disorder, showing difficulties in social understanding, development of social use of language and some evidence of rigid routines."

We have taken these as clear dx.