How would you handle this? I don't know what to do but am so angry

[ihatecbeebies]

My (almost 5yrs old) DS has asd, we've been told we wont get an official dx until DS is 11, but have been told unofficially by the health professionals involves that he has asd and it is pretty obvious that he has asd too. His uncle also has autism.

DS is very bright and asked if he had autism like his uncle as he was different like him so I didn't lie to him, was honest and explained everything and got some books which explained autism at a Childs level and DS seemed to understand this and was ok with it after asking a lot of questions.

DS hates the Hoover or similar loud noises so I bought special noise cancelling headphones which DS was very happy about. He visited his dads/grandparents at the weekend as we're separated, and DS asked his gran if he could have a pair of headphones for when he was with them too as he didn't like their hairdryer etc, his dad and gran then told him I was wrong and he didn't have autism.

They mentioned nothing about this to me but when DS came home he was very upset and confused and asked me again if he had autism.

I don't know how to handle this tbh, they undermine me all the time but never anything like this.

I went to my GP and asked for a referral. DS is 5.

I have been told that our local PCT would refuse to do anything for anyone at first and 85% of people never went back, this was how they saved money. Only those who pushed got anything at all. It is a money saving exercise. Try for a private referral and diagnosis if you can.

Can the NAS not help here?

I was told that the NAS wouldn't be able to offer us any help without a dx but I'm begining to doubt everything I've been told now.

I rarely post these days but I am SO shocked about your situation.
DS was diagnosed with ASD at 2.10 and is also high functioning, DD is awaiting her second assessment which will result in a diagnosis and she is only 2 so you are truly being fobbed off. Even if it is the case that this is how things are run in your area it is an utter disgrace and you need to make a total nuisance of yourself until you get that diagnosis. Do not be scared - be a pain in the arse !

A diagnosis opens all the doors you need but perhaps more importantly in your situation, given your son is getting help, gives you a piece of paper to stick under the in laws' noses. I can't begin to imagine how confused your poor little boy is and your must be worn down by their denial. My heart goes out to you.

I'm in Scotland too (East Central) and haven't heard of the P1 and P7 rule. Incidentally, my dd is in P7 and just been referred for ASD assessment..

Scottish Autism have a diagnosis and assessment service with an open referral system, more info here www.scottishautism.org/autism-knowledge-services/national-diagnosis-assessment-services/

I must add I have no experience using them so unsure what the costs might be.

Ceebeebies my 4 yo got dx recently in east Scotland. No policy here on dx-ing at p7 only. In fact they pride themselves on having one of the shortest ADOS (autism diagnostic observation schedule) waiting lists in the UK.
This is a postcode lottery. In your position I would get my MSP involved. A letter from your msp should open doors.
A dx might help things with your in laws but it sounds like they need to learn about the breadth of the spectrum.

Am amazed your boy can comprehend autism. He must be very bright.

Thanks a lot for all of the repliese everyone, I've got a lot of useful information.

Thanks Yanny for the link I'll try and call them tomorrow for more info.

Oodles I have already given them plenty of information about it but they are in complete denial, I think I'll get a list of the obvious traits and write down some examples of when DS exhibits these and see if that will convince them. Yeah I was taken aback and a bit heartbroken when DS asked me if he had autism, I didn't think he'd understand it at all but because his uncle has autism he recognised similair traits they shared but noone else did, and he said he was different from the kids in his class :( which upset me a bit too. I got a good childs book that explains it more for him and it answered a lot of questions he had and made him feel better.

I'm really sorry to hear that your family are not being supportive. From being on MN for a while I'm afraid it seems this kind of denial is quite common though! My DS2's grandparents were very dismissive for a long time, the usual "he'll grow out of it/just a phase" type responses. Have you had a look on the NAS website for info for grandparents here. They also do quite a few leaflets and books - many of them free that might help. I really like this book www.amazon.co.uk/Can-Tell-About-Asperger-Syndrome/dp/1843102064/ref=sr_1_2?ie=UTF8&qid=1323690058&sr=8-2 it explains things very simply and clearly.

Sorry about the problems you're having with your health authority. I've got no expertise in that area but it doesn't sound right to me. DS2 was assessed at 5 and again at 7 when he got a definite diagnosis. We're in SE England though.

ihatecbeebie, i stay in north lanarkshire (west) too. My ds is 10 now but was dx aged 4.6. I kept asking about dx of asd was told no definetly not eventually went private Nuffield Glasgow (was about £130 i think), there half hour to be told definite asd they sent letter to paed who then did own asd assessment and apologised saying was looking for other things. Think its important to get dx as it helps get support, etc that your ds needs.

Thanks Shazian, I stay in South Lanarkshire, I think I shall look into a private assessment too, I was worried about the cost as I am a student and lone parent so my budget is quite tight but I was expecting around £500, but that is less than I thought it would be.

ihatecbeebies, would be worth phoning for cost of private consultation. Think Nuffield Glasgow is nearest for private consultation in Lanarkshire, (dont know if there is one nearer you). When i went i just explained my concerns about ds and was told first consult was £130 and if he needed any treatment would obviously be extra. Never needed any other treatment was only looking for dx, incidentally i saw the doctor who works in Yorkhill that my comm paed had actually canx my appoint for saying ds definite not asd.

Don't be silly, hijack away

Could you try googling private health care Edinburgh for a list of numbers then start phoning around?

I got an appointment with dc's GP for Friday and am going to demand an appointment with a paediatrician, and if he doesn't give me a referral then I'm going to get in touch with a few places that posters have mentioned on this thread.

I posted on your other thread before I saw this Imogen

Good luck!

Yeah it's awful, sometimes they leave you wondering who the expert is, you or them! Good luck with everything [can't do a flower on iphone emoticon].