Help and advice re our AS diagnosis

[dinky73]

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.

 

dinks

[mariag]

Hi dinky73 I would take her to camhs she is old enough to go there now and she would see a psycologist there who would give a written diagnosis. Also explain to your peaditrician that without written diagnosis you cannot benefit from DLA and other help that you desperately need! Hope this works :-) :-) Maria x x

[cmuir]

Hi dinky73 I would take her to camhs she is old enough to go there now and she would see a psycologist there who would give a written diagnosis. Also explain to your peaditrician that without written diagnosis you cannot benefit from DLA and other help that you desperately need! Hope this works :-) :-) Maria x x

 

 

Hi

 

Just wanted to advise that I applied and was successful if receiving DLA for my son pre-diagnosis. So, a diagnosis is not essential - you can claim for DLA without a diagnosis. When filling out the form it may be that you could put the school and the Paed as contacts who would endorse the claim.

 

In honesty, I think it could be that the Paed you've seen is experienced (you say he's near retirement age) and can spot/diagnose children fairly easily given his experience. It's inevitable that not everyone he sees is going to be happy, hence the remarks you've heard. It could be that the man has spoken with the school, etc - I don't know. A Connors Scale usually gives a very good indication of ADHD since it's usually filled in by the school and parents and so if there's a match that's makes diagnosing easier. I had the opposite problem in that my son and I were passed from pillar to post and it was a very long process to get him diagnosed. I felt we saw a lot of the wrong people, before finally seeing somewhere who seemed to know instinctively what was wrong with R. A private diagnosis won't necessarily get you anywhere - education officials in Scotland certainly don't usually acknowledge private diagnoses hence reason I didn't go down that route.

 

Caroline.

 

Caroline.

[dinky73]

Hi

 

Thanks for the replies, I am finding this all a bit overwhelming actually. My dd actually gets on ok at school (most of the time) and is flying academically. I feel she really needs help psychologically, she struggles to control her reactions and ressponses, doesn't always do well in social situations and know social rules. She gets very angry and frustrated and this is getting worse. I don't think we would qualify for DLA as I don't think her needs are that extreme, she is not physically disabled, I don't need help caring for her, she can do things for herself so I am not too sure how DLA works.

 

Can anyone tell me more about Cahms? I have heard it mentioned a lot, is it something the Paed should have offered me? As he has diagnosed her himself will he not say there is no point in cahms? I think she needs help with understanding her own reactions and behaviour and how it affects others. We have had OT help for her physical problems but no help for her other issues such as behaviour (which is actually ok most of the time and managable apart from new things and change which affect it). She is an only child so we can give her all the time and attention she needs which helps but I feel I need to understand her more and she needs to understand herself better.

 

I don't really know what to do next? Should I just take the diagnosis and shut up or should I push for more help and understanding. I am dreading school starting as she had a terrible start to year 1 and they almost called in an ed psych last year but then she settled and everything was ok.

 

Thanks

[thomastank]

 

 

Hi there, I think you should push for a formal written diagnosis if you can. I'm afraid I don't know about Cahms as we have never used them but I'm sure someone will be along soon who can help. As for DLA, she doesn't have to be physically disabled. There is a good breakdown of the form somewhere on the net, it gives you ideas for filling in questions so you can see if you think you might qualify. If I find it I'll post it on.

 

[thomastank]

Found it!

 

http://www.cerebra.org.uk/parent_support/DLA_guide.htm

[dinky73]

Found it!

 

http://www.cerebra.org.uk/parent_support/DLA_guide.htm

 

Thanks for the link. It is very interesting as I had never considered DLA before. She is my only child so I don't have to struggle coping with any other children. I suppose she does fit some of the criteria, as in she is often unaware of danger around her (i.e. she will walk into the road to avoid a dog on the pavement). She does ok with all her personal care although if I didn't tell her she wouldn't think of brushing her teeth or combing her hair, but then she is only 6! She can dress herself (sometimes is back to front :-)). She is toilet trained and doesn't have physical pain. Occasionally she has leg/hip pain due to hypermobility but again its intermittent and doesn't really cause her too many issues. I suppose because she is all we are used too i don't see her as needing much more help than others but maybe I am wrong.

 

I looked into Camhs on the internet and it looks interesting, I hadn't realised it was just for mental health. I do think she suffers with anxiety at times and often gets stressed/frustrated with life but don't know whether the Paed would think it warrants a referral to Camhs.

 

I think I will write him a letter expalining my concerns about not having a diagnosis written down and also that I feel she may benefit from some further testing or help to do with her social emotional well being.

 

Thanks for all your help.

 

dinks

 

 

[lsw146]

It is really hard to keep questioning the experts but today I chose to yet again ingore them and after years in and out of the system and no diagnosis have asked for a new referral, it is really scarey but our DD is 15 now and sounds very similar to yours. She has made a lot of progress but her response to changes and pressure and really unpredicatable and uncontrolled and we have decided that we need to get another asessment before she becomes an adult and hopefully before school is finished so she can be supported there as well as home.

 

Good luck

jo