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Advice needed, has anyone come across inconclusive ASD test results before and what does it mean?

(3 Posts)
andyjay Thu 20-Sep-12 16:55:54

Hi could really do with some advice,

My daughter now 12 and a half was referred to Rotherham CAMHS almost 2 years ago by our GP. She's always had sleep problems, sensory issues (particularly with clothes), obsessive routines etc. She started her comprehensive school last September and literally dropped out after a month (that's another story)
CAMHS only took us seriously at this point, as her anxiety and meltdowns were off the scale at this point in time.
After lots and lots of nagging (and a visit to my MP) they started to test her for ASD, initially neuro development in which they found she missed social cues and struggled with understanding emotions and as a result put her forward for ADOS, which came back inconclusive, then Gilberg which I've been told is also inconclusive. I've had no feedback as to why the tests were inconclusive or explanation as to what this means, even though I have asked on more than one occasion, our worker can't even tell me what happens next!! Our worker cannot understand why we want a diagnosis anyway! (I have explained this to her on numerous occasions!)
My daughter has however been referred to a Psychotherapist to look at the possibility of working on her emotional literacy, we have our initial meeting on Monday to discuss this.
I'm convinced she's an Aspie, when I first read the Tony Attwood information on Aspergers in girls, it was like someone had written a story about my daughter!! She's very bright, academically clever and has developed many coping mechanisms for herself.
Can anyone shed any light as to what inconclusive would mean in our situation?

Thanks in advance

Bluepenny Thu 11-Oct-12 17:34:38

Whilst I don't know what inconclusive means in your case, I do sympathise as even with my DS being diagnosed with 'Traits of Aspergers' 2/3 yrs ago, it was not enough to get any help or support and was incredibly frustrating.

Interestingly, we went back to the Paediatrician recently and he got a full diagnosis of Aspergers (age 12) - some symptoms had not changed, some new symptoms had crept in, there had become bigger gaps between his abilities and his peer group and anxiety had set in. His new school had also seen what neither of his old schools appeared to.

We are now going to get OT help and I feel we are making progress, slowly but at last.

I hope the Psychotherapist will be helpful, though it might be worth posting on the NAS forum with its AS specialists, experts and lots of parents in similar boats.

There is a booked called 'Can I tell You about Aspergers Syndrome' by Jude Welt - it is one to sit with your DD and is written from the AS child perspective - from this you can ask your DD if she feels like the author or not. I found this invaluable in both building the case for DS's appointment and for passing onto school.

Sorry I can't be more helpful on your actual question though.

24blackbirds Sun 11-Nov-12 09:02:12

We also had an inconclusive diagnosis at two & half. Finally diagnosing asd at 14 years for our son.
Just wondering wether you have seen Paediatrician...reading reply above?
It's one of the many battles you will face but dont give up..keep badgering on. Our Paediatrian made her decision using reports from school, clubs, friends. Getting your school on board goes a long way. You will also have CAMHS report to add too. You can also ring Ed Psych for a chat as well...look online or ring childrens services for information. Hope this helps.

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