high functioning autism toddler how long did you wait?

Hi, 

It really is a postcode lottery. I first raised concerns about my daughter when she was two and half. She was only sleeping 5 hours a night and not all at once, she was showing repetitive behaviour poor eye contact and slow speech. On top of that major sensory issues and restricted diet, I was told she will grow out of it. Took her to doctor at 4 as still struggling although speech caught up, doctors laughed at me but grudgingly referred to paediatrics, they wanted her assessed but had no access to service as at different hospital, so gp was asked to refer her told it was 2 year wait so we waited only to find out gp hadn't bothered with referral, school nurse got involved and after a year collecting evidence sent referral to child development centre, they rejected her on the basis she has a friend and on the wording of referral letters! Built new case for referral but were then told as she is 8 she needs to go to camhs, sent referral to camhs they said no as cdc are responsible until 11 for asd assessment, took it back to cdc who have this time accepted the referral but now we have months to wait before she is allocated a doctor. 

In short after 6 years she has still not been assessed. 

We have pretty much lost all faith in the process, and have explained autism to our daughter in a positive way allowing her to read about it listen to autistic people and she has come to the conclusion that she is probably autistic! .

Hi, 

It really is a postcode lottery. I first raised concerns about my daughter when she was two and half. She was only sleeping 5 hours a night and not all at once, she was showing repetitive behaviour poor eye contact and slow speech. On top of that major sensory issues and restricted diet, I was told she will grow out of it. Took her to doctor at 4 as still struggling although speech caught up, doctors laughed at me but grudgingly referred to paediatrics, they wanted her assessed but had no access to service as at different hospital, so gp was asked to refer her told it was 2 year wait so we waited only to find out gp hadn't bothered with referral, school nurse got involved and after a year collecting evidence sent referral to child development centre, they rejected her on the basis she has a friend and on the wording of referral letters! Built new case for referral but were then told as she is 8 she needs to go to camhs, sent referral to camhs they said no as cdc are responsible until 11 for asd assessment, took it back to cdc who have this time accepted the referral but now we have months to wait before she is allocated a doctor. 

In short after 6 years she has still not been assessed. 

We have pretty much lost all faith in the process, and have explained autism to our daughter in a positive way allowing her to read about it listen to autistic people and she has come to the conclusion that she is probably autistic! .

Oh my gosh you must be exhausted and frustrated. 

I do hope that you get the support your family deserves very soon! That’s so sad to hear your little one has had to go through this.  My boy at 2 1/2 sounds like your daughter at same age. It’s only recently that his behaviour has been extreme and I’m worried for the future. Please don’t give up on the process. I have spent the morning shouting at my GP surgery about breach of duty of care and failure to adhere to certain elements on the un conversation on the rights of a child. - not like me to be acting like this - I’m blaming sleep deprivation) but after all that distress this morning I’m now told that his referral has been accepted and that he will have his first assessment in 6 weeks and I also managed to get a space on a local charity’s “managing challenging behaviour” have you tried any local charities for help?