Published on 12, July, 2020
My 27 year old son has so far waited 4years and 6 months for an autism assessment with no signs of getting it anytime soon. We live in west sussex just wondered if its really usual to have to wait this long. I've tried to contact them several times but they will not discuss waiting times. I've also been in touch with PALS who do look into it but we just get a generic reply saying they can't discuss waiting times. I'm at a loss as to what to do. He has severe social anxiety so can't work and won't leave the house. I feel like I've let him down . Any advice? I'd be really greatful.
Thankyou so much. I will definitely be looking into this xx
I've just had my assessment and diagnosis today. I recommend you check https://www.problemshared.net/
The assessment via NHS can really take a long time but 4 years definitely sounds excessive.
Look for support on this website, they will guide you through the Right to Choose prices and they have a shorter route to diagnosis of your son.
They say once you're moved to their wait list you can expect to receive the date for an assessment from 12 to 24 weeks.
I recommend you tell him to restart the process with Problem Shared, since his doesn't seem to be going anywhere.
Good luck!
You’re most welcome - best of luck!
Thankyou so much for taking the time to reply. That is really useful information. I'm definitely going to contact his GP tomorrow.
Yes, you made me realise i'd forgotten that key part! Thank you
I see that, following my reply, you’ve just edited your earlier post to now explain that you went via RTC and to now also suggest it to the OP.
That’s great, as I think people would otherwise have wondered how your waiting time on the NHS could possibly be so short! :)
Hi and welcome to the community!
In my area, the NHS diagnostic service also doesn’t provide waiting time estimates - and, from what I've seen from others' posts here - most or all others don’t, either.
Your son might like to talk to his GP about switching his referral to the Right to Choose (RTC) pathway. RTC enables him to use an NHS-approved private provider of his choice, which could result in a significantly shorter waiting time.
In my case, after waiting on the NHS list for two years, I was referred by my GP to an NHS psychiatrist for medication reasons. He’s the one who told me about RTC. I switched pathways and was assessed and diagnosed within just a few months.
You can find more information about RTC here:
NAS - What is 'Right to Choose'?
This website (for example) lists some RTC providers along with website links:
Memorial Medical Centre - ADHD and ASD assessment – Right To Choose
Hi, I am based in East Sussex and have been waiting for my diagnosis for 3 months, I contacted them to ask when i'll be able to speak to someone etc and they told me its a 5 month waiting list so to wait until then.
I am with the Right to Choose scheme as it is a lot quicker than general GP NHS waiting times (its free aswell).
I think your sons waiting time is waaay to long and maybe you should apply some pressure onto the healthcare services to help him sooner and discuss RTC! Hope you get it sorted :)