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Advice on our AS diagnosis

(3 Posts)
bear73 Wed 02-Sep-09 09:39:42

Hi

Our dd (6 1/2) was diagnosed with a sensory disorder and dyspraxia aged 4. Recently in March this year we had a Paed appt at our local childrens centre (after problems settling in Y1). I had heard mixed reports about this paed but he was ok with us and agreed that she fitted a lot of the criteria for aspergers. We went back in June for a follow up and just went over the same old stuff. I again asked for a report or diagnosis letter and he said he would do one and send to me and the sch (he hasn't).

My issue is I am not happy with the diagnostic process. He relied totally on info from myself and the sch, didn't really do any tests on her as such, the only questionnaires we completed were Connors ones that are primarily used for ADHD diagnosis. On the 2nd visit he did show me the connors and said she scored very high for ADHD and Hyperactivity. We have seen an OT at the smae centre for a couple of years but have never seen anyone else, she has never seen an Ed Psych or a SALT.

I have since spoken to numerous people who have said the paed is useless and all he does is spout back info you have told him. I suspect he is close to retirement and seems to want an easy life. He is also known to never do any kind of reports and hence we have nothing in writing (but then he didn't really do any tests so not sure what he would write).

I am not disagreeing with the diagnosis as I have always believed she has AS but I am not happy that it has been thorough enough. I was at a Dyspraxia support group last night and spoke to one lady who said she asked her paed for a referral to Great Ormond Street to see some experts in the field and get a proper thorough diagnosis and assessment and he agreed and she got loads of help and a fantastic assesment and report from them which has really helped school.

I was so tempted to go private but I know the issues that come with that and people have got nowhere with a private diagnosis. I feel I want to write a letter to our paed explaining (politely) that I agree with the AS diagnosis but everything i read about the diagnostic process says its more lengthy and multi disciplinary and should be done by someone who has asd's as a speciality.

Is it OK to do that? what are my chances of her being referred to a specialist? At present she has Sensory Integration Disorder, Motor Dyspraxia, Asperger's, Hypermobility and possible ADHD. I also have nothing on paper from anybody, apart from a private report we had done for her sensory issues when she was 3, (this helped us get her OT appt's on the NHS).

Her OT treatment is great but we have never had anything in writing.

Is this right that I have no reports, no assessments, no formal diagnosis letters. Shcool have recieved nothing except info from me. I feel very strongly that I want her assessed properly as she has so many conditions and possible conditions. I would be grateful to hear of other peoples experiences. Thanks and sorry for the long post.

bear

whatreally Wed 02-Sep-09 17:34:50

No, it isn't right that you have nothing in writing from anyone. My DD sees an OT & SALT & they have both written to the school & gone in & spoken to them. In turn school have also been instrumental & supportive in trying to refer elsewhere so that we can investigate the possibility of ASD. I think it is in everyone's interests to get written confirmation or at least a summary of what the problems are for your DD. Further down the line, if ever a statement is needed they will add extra clout. Go & rattle some cages. If your SENCO is supportive she might have ideas of who you can contact. Wasn't the Surrey Dyspraxia Group was it!?

bear73 Thu 03-Sep-09 14:28:38

Hi

No, it's the Herts group, they have been great and organise so much for the children.

Our senco isn't great so I may not go down that route. I think I will sit down later and write a letter with all my concerns. Someone on another board suggested Camhs but I know little about them. As her issues tend to be social/emotional issues and anger and frustration she thought they may help her with that but the Paed has never mentioned them.

I will see how I get on requesting a written diagnosis and also whether further testing is needed.

Thanks
bear

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