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Struggling to get a diagnosis - what next?

4 replies

WingsInTheNight · 01/05/2017 13:31

My 12 year old DD has a history of school anxiety which suddenly got much worse this year, with the result that I'm now homeschooling her. When her anxiety became overwhelming the thought occurred to me that she might be autistic (as I am) so I asked the GP for a referral.

She initially saw a psychologist who administered the ADOS, which indicated ASD Level 1. We've just seen a paediatrician, hoping for a confirmation of the diagnosis. After a 10 minute consultation, which included questions like "do you keep your room tidy?", he said she obviously has social difficulties but he can't see any sign of repetitive behaviours or communication difficulties. He's referred her to a child and youth mental health service for counselling for her anxiety.

The thing is, she does have communication difficulties. She's bright and did well at primary school, but she struggles to articulate her thoughts or express complex ideas (verbally or in writing, which I'm really seeing now that I'm homeschooling her). She's always been on the outer fringes of social groups, without any close friends. Her focus at the moment is entirely on a couple of video games and associated YouTube videos and wikis. The signs are there, but the paediatrician didn't see them, I think because she comes across as quiet and shy and very compliant.

She won't talk about it but I could see that she was upset about what the paediatrician said. She knows she's different. Maybe she's not autistic, and there's something else going on, but I'm not happy with the paediatrician's "assessment".

I don't know what to do now. Money is a real hurdle. Do I try to find the money for a private assessment? Do I wait and hope the mental health team will do further assessments? Do I take her to a university psychology clinic for further assessment and then take those results back to the paediatrician and hope he accepts them?

OP posts:
PolterGoose · 01/05/2017 14:21

This reply has been deleted

Message withdrawn at poster's request.

WingsInTheNight · 02/05/2017 07:18

Definitely not the UK but I hoped someone who has run up against this sort of problem might have some advice about which way to turn. In this area an official diagnosis needs to be made by a paediatrician or child psychiatrist, or possibly a clinical psychologist. The psych we saw isn't a clinical psychologist, just someone very experienced with ASD.

There is financial assistance for homeschooling available if a doctor signs off on it as being necessary for medical reasons. It's easier to get with an ASD diagnosis but I think now I will have to ask the GP to fill in the forms on the basis of her anxiety and cross my fingers.

I don't do well with uncertainty. It might be easier if I had a time frame for seeing the mental health service but the paed didn't say which service he is referring her to so I can't even call them and ask how long we're likely to have to wait.

OP posts:
PolterGoose · 02/05/2017 07:31

This reply has been deleted

Message withdrawn at poster's request.

youarenotkiddingme · 02/05/2017 21:33

Yeah I struggle with never ending time frames too! It's like permanently sitting at a bus stop without a timetable!

The home ed sounds promising

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