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ASD tests inconclusive? Anyone come across this?

(12 Posts)
andyjay Thu 20-Sep-12 20:25:25

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

bochead Thu 20-Sep-12 21:08:13

Time to ask for a second opinion from a centre of excellence. The only ones I know of for neurodevelopment are maudlsy Autism clinic, Gosh neurodevelopment & St Thomas's (was Guys) Newcommen centre for neuroscience.

Don't give up - DS wasn't given a full diagnosis 1st time round. 18 months later on a 2nd opinion he got one. This really suprised me, (though I'd never admit it to my LA!) as tbh he made MASSIVE strides forward between the assessments in all areas, as he'd finally got SALT and lots of other help. I personally think that budgets and politics prevent some higher functioning kids getting a diagnosis 1st time round locally. That isn't a consideration when you go out of area for a 2nd opinion.

It's far cheaper to blame parenting, or other nonsense than it is to pay for proper ASD interventions and education. Not everyone who administers the ADOS knows much about Pdd-nos, pda, AS or any variation of autism beyond the classic non-verbal preschooler male. You were asking for a high-functioning adolescent girl to be assessed. Yes I am VERY cynical nowadays.

CillaSlack Thu 20-Sep-12 21:12:41

Agree with Boc. It took a long time to get dx for ds as he is so complex apparently. Keep at it and you'll get there eventually.

Ineedalife Thu 20-Sep-12 21:33:22

It took me 3.5 years to get Dd3 diagnosed. She is also very capable academically with lots of coping strategies.

I kept demanding referrals and wouldnt let anybody discharge her, eventually we were sent to CAMHS who in my area were brilliant, especially the nursing practitioners. They supported us all the way and she was diagnosed using a DISCO assessment.

Please dont give up I know it is hard but you will get there in the end.Keep coming on here for support and advice.

Good lucksmile

andyjay Fri 21-Sep-12 07:40:28

Thanks folks, I've never been more convinced of anything in my life, but get the feeling our local CAMHS think I'm some sort of neurotic mother.
We have a strong family history of neurological disorders, I have a sister and a niece with ASD, a sister with narcolepsy, epilepsy etc and they dont even seem to be taking this into consideration. I'm interested in pushing for a DISCO but I know they're not keen on providing this sort of assessment.
I need to keep pushing for my daughters sake she keeps asking questions but I have no answers for her at the moment, she wants to know why there are some things she cant do the same way as her sister can and I know this is going to get worse as she gets older.
I've had to leave my job to be at home with her full time as she is coping less and less.

myBOYSareBONKERS Fri 21-Sep-12 08:18:55

After 5 years ds1 (age 9) was finally diagnosed as ASD by the neurodevelopmental clinic at CAMHS. He had a "normal" ADOS two years ago but his community pead was not convinced by the results and referred us to CAMHS for further input.

Keep plugging away

streakybacon Fri 21-Sep-12 08:21:32

bochead has hit the nail on the head. It's not about whether or not the child meets the criteria for dx, but whether there is enough money in local budgets to provide the resources once they are diagnosed. And yes, it costs nowt to blame the parents, which is why this has become a default setting for assessment conclusions. Sad but true sad.

lionheart Fri 21-Sep-12 12:38:19

DS was diagnosed by a child psychiatrist. He did ask us if we wanted to take the diagnostic tests but pointed out that some parents don't if their child is borderline. DS would have scored highly in some areas and less so, or not at all in others so when it was all totted up might have just fallen outside of the cut off point (or just inside).

AttilaTheMeerkat Fri 21-Sep-12 13:01:30

What bochead stated.

I would add that CAMHS certainly have their place but they are really a mixed bag when it comes to ASD: its really not their specialty at all and people are failed by them.

streakybacon Fri 21-Sep-12 13:57:19

Too true. It always baffles me that developmental disorders and mental health conditions are lumped in together under the same department banner. It's bound to cause overlap confusion, and does.

joencaitlinsmum Fri 21-Sep-12 13:58:57

Hi

My DS was seen & was diagnosed by a child psychiatrist at 11 with no other tests basically as at that time we just wanted a diagnosis to help with getting him into the secondary school of our choice via the appeal route and didnt want anything else from CAHMS I do think that if we had been after getting him any help the outcome would have been different!! At that time we were trying to access with school if he would need a statement.

He has just started yr 8 and school provides him with the help he needs and when he wants it there (he doesn't have a statement) and we bumble along at home, having had no further referrals or useful information from CAHMS in the past dont hold out hope of results if we need them in the future.

andyjay Fri 21-Sep-12 15:50:25

The worker we have (god bless her) hasn't got a clue. I once mentioned Tony Attwood during a conversation and she asked 'who's that?', when I asked for feedback about my girls tests she just said inconclusive and when I asked what that meant she just shrugged her shoulders. So I said 'ok then refer us onto sheffield for a 2nd opinion if she's too complex for Rotherham to deal with, somewhere that they can look at all disorders such as PDA' and her response was 'I don't really know what PDA is!!' It doesn't fill me with confidence. She keeps banging on about how my daughter needs to learn visualisation techniques and positive self talk! She has no understanding of emotions or social imagination for crying out loud!
I think Bochead is right we do need a 2nd opinion, but I've got to persuade Rotherham CAMHS to discharge her first otherwise a referral won't be made.

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