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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

autism diagnosis

35 replies

Tanaka · 09/02/2021 18:13

Is anyone here also frustrated with the waiting list for a autism diagnosis. My 8year old son has been showing signs since he was 3 but my doctor dismissed it and told me it was too early even after I told him that his teacher had concerns. Now I have been on the waiting list since last year January. I am depressed now and just need support.

OP posts:
PastMyBestBeforeDate · 10/02/2021 10:23

If it's support you need, it is probably worth starting the EHCP process. Look at the IPSEA website for information.

Glitterandcrimson · 10/02/2021 10:57

I'm in Scotland so it might be different but I call up every so often to get an estimate of where DS2 is on the waiting list and how much longer we might be waiting. They have a huge backlog obviously with covid so we've been waiting about 18 months so far and they estimate it'll be his turn in the summer hopefully before he starts nursery in august so still a while to go. With DS1 he was diagnosed just after his 4th birthday and it took less than a year from referral to diagnosis.

Its definitely worth calling to make sure you are still on the list and see if they can give you an update or waiting times.

As for support, honestly, you need to look at some charities for help at the moment. Even after diagnosis, support is pretty weak. Try and find some local groups on facebook for support, and maybe actual groups that you can attend in person when it's all allowed again. Always go to your GP if your DS is struggling with anything in particular like sleep. You can also apply for DLA without a diagnosis, the form can be a bit of a minefield to fill in and I recommend looking up the cerebra DLA guide if you do apply.

If you are struggling personally with mental health or anything then please do go and see your GP. In person support is obviously very limited at the moment but your GP should be able to help in the short term until things are a bit more normal.

Have you got a good support network? Partner, family, friends? Try to accept help from whoever is willing to provide it, even if it is just to have an hour to yourself on a walk or whatever. A short break from it all really can make a huge difference. Flowers

FireflyRainbow · 01/04/2021 19:17

My son regressed as a toddler but nursery said it's to early to tell and school said 'see how he gets on' school didn't even refer him I went gp and from then it took nearly 4 years to get a diognosis. I ended up doing 3 CAMHS forms. First one they said needed redoing by the time they got to it and 2nd one got lost when they moved buildings. Bloody nightmare it was.

FireflyRainbow · 01/04/2021 19:19

Was probably nearer 5 years tbh.

FireflyRainbow · 01/04/2021 19:20

He got DLA for those 5 years with no diognosis though. You don't need one for DLA.

Oblomov21 · 01/04/2021 19:25

Ours was quick. But Surrey was better years ago. I played the system. Got refused NHS. Went private. Deliberately chose private doctor who did the nhs clinic too. Requested him to then arrange a nhs appointment ASAP, which he did. And then got diagnosis.

And offered early bird course.

BlankTimes · 01/04/2021 20:07

Deliberately chose private doctor who did the nhs clinic too

This is key for going private, to choose someone who also takes NHS referrals, then no-one can say they 'don't recognise' the diagnosis.

elliejjtiny · 01/04/2021 21:10

Yanbu. Dc1 was diagnosed 7 years after I first raised concerns, dc5 was diagnosed 6 years after I first raised concerns and we are still trying to get an assessment for dc2, 8 years after I first raised concerns about him.

I find the main thing that makes a difference when you have the diagnosis is that I find professionals listen to me and respect my opinion. Also they believe me if I say "he has autism, this behaviour is normal for him". For example when my older child does something a toddler would do, or doesn't speak/make eye contact etc.

BusyLizzie61 · 01/04/2021 21:23

@Tanaka

I am based in Kent and currently awaiting a paediatric referral.He attends a catholic school but they don't have experience,
Historically in Kent, once the child is 8yoa,it takes even longer for diagnoses.

My advice would be to get as many of your ducks in line. So if has other needs, get those sorted/addressed so that if they will assess its all available ASAP.

My lo had evidence from about 18 months of age to 5.5,so there was a lot of multi agency reports which made the diagnosis a fornality on essence.
Speak to the autism support groups such as www.kentautistictrust.org/

In terms of school, they should be supporting your child regardless of a diagnosis.

LizBennet · 01/04/2021 21:28

Awful those waiting times 😳
My son was diagnosed at 2.5, I first took him to the G.P when he was 17 months because I knew he had autism.

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