ASD non-diagnosis: Has anyone asked for a second opinion or for a referral to a specialist centre?

[DishwasherDogs]

Ds was assessed in January and didn't get a diagnosis.
I have a meeting with the ASD co-ordination coming up this week, to discuss the results in more depth.
I have a list of things I am not happy with about the assessment, and will be asking for a second opinion or a referral to a specialist centre.

Does anyone have any experience of this?
Any tips?

A friend got the Newcome Centre but it took several people working on it eg GP,CAMHS, school etc. Mostly because the paperwork was going astray and no-one seemed too sure who was needed to sign off.

If you don't ask, you won't get, that's for sure

I know I won't get anywhere with camhs, and school won't support it, as they don't see anything untoward, but would it be worth talking to ds's GP about it before the appointment this week?

Thankyou.
Do these have to come through a referral from the hospital, or can I go through my GP?

We're despairing too Polter :(

I worry that others are making their own stories up and seeing bad parenting without evidence, after all, that's not unheard of.

My other dc have problems with anxiety. It wouldn't surprise me at all if ds1 was also on the spectrum, and we have had camhs involvement with him due to prolonged bullying which ended when we took him out of school. He struggles socially and is very similar to ds2 but not as extreme. We understand him now so know that his outbursts are due to something bothering him, and deal with it accordingly.
Dd sees the school nurse regularly due to anxiety, but will talk through everything with me.

So there are siblings that display similar behaviours (perhaps they're related? ) but we are dealing with those and hopefully making the right choices to help them.
With ds2 though, we cannot live a normal life, much as we've tried. We haven't had any choice but to go down this route for him, for his sake.
We could do what others expect of us: treat him as a naughty boy, become harsh disciplinarians and smack him, exclude him for every single thing, but tbh, we have tried that, and ruled it out as an option (not the smacking bit!), and if we continued down that route it would be incredibly crap parenting knowing what we know of him, and it would be pointless.

Sorry, I know you've all heard this before, several times!

We had 5 years of this! Eventually I made a complaint to the head of service for the paed doing the assessment, as she clearly didn't take our concerns seriously, despite her colleagues agreeing with us, and made up her mind after a 10 minute appointment! She accused me of being an over anxious mother and that my daughter was not classically autistic. I never said she was, I believed she is on the spectrum and was at the Asperger's end, and not the other end.

Took 9 months to get an appointment with the best in our area, following my complaint, and another 6 months of working with her, but we finally have a diagnosis, and it is Aspergers as suspected.

My advice would be to stick to your guns. You are their mum and know them best. We also had issues as no real problems at school, and therefore difficult for them to intervene and support us (because the school routine suits her).

Can you contact PALS or similar for advice of who best to complain to/ask a second opinion from? It might all depend what is available in your area? Can you ask for some advice from the national autistic society?

Ultimately, don't give up. It's a long, hard road, but if you feel like me, you need to know for sure that you've done everything in your power to get to the bottom of the issues, whether that is a diagnosis or not, but to know that you have helped them the best you can. Good luck!

Thank you :)

We're not going to give up. Over the last year we have been warned that our area is one of the worst in the country for ASD diagnosis and support, so we did expect it not to be easy.

I think at school he's ok because it is structured, but he also has a need to fit in and be like everyone else. He will only be himself at home and when in the company of strangers.

I wish we had left him at the old school, even though it was awful getting ds in every day, because at least there he was having outbursts fairly regularly, and had to be dragged into school by two teachers occasionally.

School don't see what I see either. I can't belive they see nothing, but that suits them I guess. I saw ds flapping behind his ot back, and stopped as soon as she turned. Ot says he hides it well - but in six weeks she said that - three years and school don't / won't / can't.

Parent as you have to. It's all I have. There's no help for my middle boys asd traits. I'm fighting the same fight as you but we're lucky he has a dyspraxia dx. So everything except the behaviours we have help with

We got ds's autism dx at second opinion. NHS Child and Family Team (equiv CAMHS) had an 'inconclusive' assessment so we did some research and found there was a local centre that did one-day assessments and we asked for a second opinion referral there. Diagnosis at the end of the day.

It's worth bearing in mind that CAMHS aren't experts when it comes to autism - they primarily deal with mental health issues and kind of get autism referrals by default, hence so many non-dx slipping through their fingers.

See what's available locally. Ask at support groups, GP, even national groups and forums might have some relevant advice.

Thank you streaky, ds's assessment was done by the ASD team at the hospital, led by a developmental paed.

I'll ask around.