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in middle of as d assessments but psychologist saying we may wait and see- surely not after five years of this?

13 replies

used2bthin · 16/01/2013 10:38

dd has been being seen for five years after she lost language at seveBreen months. she has lots of issues mostly speech and Lang but also a genetic condition which confuses things as the meds affect behaviour and also she has sensory processing problems and bowel ,bladder and skin probs.

after years of waiting and various tests I asked for autism tests and our paed said she is almost certainly on the spectrum and clinical psychologist is doing testing which began this week. Dd was very compliant during the testing. sadly due to years of serious medical problems and hospitalizations she is at home at hospital! her severe language issues meant testing was complicated and the psychologist said she also needs parent history next week then to talk to school then if she feels it's still unclear she will refer elsewhere or wait and see and put traits on the report. I feel desperate at this l have been reading up on autism and I know I am not a doctor but dd has shown so many signs,I now think she could easily have been diagnosed at two when I now realise this is what people have thought all along.

can I do anything if this happens? she discusses Nyone know what we could be waiting to see now? am tearful and feel so down at the possibility of still no diagnosis but a child about to move to special school and who is very obviously struggling due to me and others not having known how severely the sensory and obsessive stuff affecting her.

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SallyBear · 16/01/2013 10:49

Used2bethin. Did you say that she is moving to a Special School? Have they got children with ASD there? My DS's SS has kids with all sorts of disabilities and they are brilliant with ASD. While you are waiting for the professionals to dx, have you spoken to the HT at the school to see how they will be able to assist her?

used2bthin · 16/01/2013 10:56

hi thanks yes the deputy there has been observing her in mainstream and there as she is doing one afternoon a week there already.she mentioned her sensory needs and about how they do sensory integration stuff throughout the day to get the children focussed etc so I think they will be great for her it's just I really thought we were finally there with diagnosis. and she so obviously has autism I am not sure what there could be to wait for now.

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StarlightMcKenzie · 16/01/2013 12:29

Tell them you want a dx of ASD or a very clear explanation of what exactly it is that puts her short of a dx.

zzzzz · 16/01/2013 12:32

This reply has been deleted

Message withdrawn at poster's request.

silverfrog · 16/01/2013 12:34

agree with Star.

be clear on the triad of impairments, and why your dd meets criteria. ask them if they agree. ask them what more they need, and what would be gained by waiting (given your dd's age and ongoing difficulties).

it's a bit of a 'don't take no for an answer' situation. sometimes dx's are put off so as to not overburden services (which can only be accessed post dx).

Handywoman · 16/01/2013 12:38

Agree with Star, Honk honk honk honk honk

used2bthin · 16/01/2013 14:50

thank you all so much. I feel I can.t cope with more delay so am writing down a detailed list of relevant stuff since she was little. school will agree with me I am sure so that will help. I am also having to prepare evidence to argue for funding for treatment of a bladder issue she has and finding it all so stressful. disability social worker is coming today,she will certainly find me suitably in need of support,keep crying!

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used2bthin · 18/01/2013 11:42

I suspect Mondays appointment will now be cancelled due to snow. I am so keen to get on with this now I can.t stop worrying about yet more delay. I have the book autism and superheroes, a layman's guide. also ten things every child wishes you knew about autism. any other reading that could help me with my notes on the triad? thanks and hope you are all ok in this weather.not much fun being house bound sometimes!

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used2bthin · 18/01/2013 11:44

oh I love my kindle.s correction to me typing aspergers!

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used2bthin · 20/01/2013 09:33

ok reading up and I am not sure any autism tests are being done unless it will be tomorrow but tomorrow is mostly parent interviews to my understanding. this is going to drag on again isn't it?

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mancshell · 20/01/2013 10:36

my lad went to camhs when he was in reception at school and he was finally diagnosed with asd when he was 9, its crazy how long it can take,
if me and my hubby didn't push the camhs team we still would be waiting and i am sure if that, when he was eventually diagnosed they went and discharged him, now he is waiting to be assessed for adhd too but because his case was closed he is going through all the crazy waiting list again,
my daughter was also seem by camhs and was assessed really quickly and diagnosed even quicker and they see her regularly, mind you she's on medication,
my sons case is far worse so i was really mad when they decided to throw him out of their care all they offered afterwards was support group meeting for me and dad, i know the frustration your feeling, its horrible isn't it,
you gotta stamp your foot down to get any sort of ear listening to you in the world,

used2bthin · 20/01/2013 11:43

thank you yes it's so frustrating. I thought it sensible to wait when she was under two but I never dreamed we.d still be here age six. she is described as having complex needs so I am expecting to be told she needs further assessment- the further assessment I have been asking for perhaps!

I am treating her as having a diagnosis already but it's others isn't it? poor you waiting till nine!

I can see how dd has beencomplicated as her lack of language hasn't helped and some things like dislike of loud or bright places have been clearer the older she has got and she is very happy and confident (though less so these days due to not being understood fully) but now I know more I think she could have been diagnosed years ago had she had full assessments.

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used2bthin · 21/01/2013 16:38

back from assessments and needn't have worried. definitely autism and the report will say so clearly as its important in accessing services,her words. such a relief. feeling strangely nothing but it's good in terms of support, I know it is.

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