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Please help, been told son not autistic now what?

26 replies

mrshess · 26/07/2010 20:22

So after 2 years of being messed about they have said my son isnt autistic. I do have serious doubts on this and i feel my son is more Aspergers than autistic as he is very chatty. Im not well up on this so would the ados test have covered aspergers as well?
We were told to go on a parenting course as apparently my son loves controlling us and basically thats it
I havent stopped crying as i thought we would have had answers by now and i know my son does have issues which arent about control.
Has anyone had their son or daughter told they are not autistic and then later down the line they are diagnosed?

OP posts:
PerpetualCircle · 15/11/2019 20:07

We were totally fobbed off by CAMHS two years ago, got the “autistic traits but not autistic “ line. Surely ,if it walks like a duck and talks like a duck.,etc. But because of the eye contact he didn’t score high enough on ADOS.

The last 2 years have been hellish and the support we would have received with DX would have been a big help.

CAMHS also tried to claim attachment disorder ( on the basis of my PND when DS was newborn) this diagnosis was eventually dropped.

2 years later his school now give him the support as though he WAS diagnosed and progress has been made. But lots has happened in between that could have been avoided. The head is furious with CAMHS and wrote to the paediatric dr to refer back to CAMHS, so we are on waiting list for CAMHS assessment AGAIN. He is expected to be assessed by CAMHS in June 2020.

I can’t wait that long ( moving to secondary)and I am now fortunate enough to pay for private assessment taking place in jan 2020.

It just makes me so angry, this had been going on for 5 yrs! CAMHS are not even autism specialists so why is so much weight placed on their opinion? NHS are having to engage private partners to help with their mess. And is it not surprising that waiting lists are huge when so many families are referred back after initial failures to diagnose?

It seems that the ADOS methodology CAMHS use is also flawed, with the DISCO method being used now in the States and Lorna Wing being a far superior diagnostic tool.

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