"We don't know how to handle him, it's just trial and error, we've got no-one telling us." <-- And even more sad is the fact that even when you get a diagnosis it doesn't automatically lead to help in all cases.
Someone I know saw the story in the PCT minutes and leaked it to the press using the NICE guidance as a hook. It was on Radio and they invited PCT on hence the apology. It has been going on since 2004 and some families had waited 4 years they weren't even honest about the waiting list - families have to wait 2 years to get onto the referral waiting list then 2.5 years on that. The PCT even refused to fund an out of area referral
We requested a referral via GP in July 2010. Had first appointment in August 2010 with CAMHS tier 1 who decide if anyone needs to see you. Got first appointment with CAMS tier 3 in Jan 2011. Put on waiting list for ADOS in March 2011 and we're still waiting. CAMHS have seen us a couple of times since but not allowed to see Psych till had ADOS which won't be till at least Jan 2012! Needless to say we're not impressed especially since DD is nearly 13 and suffering with anxiety and becoming a school refuser.
At 2 DS was DX with GDD and behavioural problems at 6 severe ADHD and sent to EBD school. We were dismissed from 'Autism team' at 8 after a 1 hour assessment as he was categorically not autistic as he had eye contact and interacted with his carers, he was seen by OT at primary school with regard to sensory issues but no-one saw us until he was 14 when we filled in questionnaire and SPD was DX. EP argued the DX at every review until he retired when DS was 12 as did paediatrician and school, EP got him into a fantastic school for ASD kids. He is now under adult team Dr has seen him 3 times since January nurse 4 times and SW is in constant touch. Children's team saw me not him every 6 months and dismissed all my concerns. Dr has said it is 99% certain he is autistic but is coping amazingly and that we are doing great job and relaxed about him [we've had to me no support so had to be] we get his first 2 hour assessment by adult autism team in 9 days just to take a history not to see him. He was 17 in July, found out the Dr he had as a child would not DX both ADHD and Autism and that adult team have loads of young adults coming to them with no proper DX as they don't want to label them.
DS was referred as urgent to camhs in January. They dont actually have a working multidisiplinary team due to no qualified psych. This wont be happening till Jan 2012 (so far but its only pie in the sky) So no children in cornwall would have been seen at all this year.
Well done Agnes's friend for getting it out in the open. We need more leaks like that around the country. Although as our neurologist said, "there's no evidence that early intervention improves a child's outcomes", ergo no need for early assessment or dx.
We had a 13 month wait for ADOS (from first raising concerns), but local NHS would claim it was only five.