Autism assessment waiting list

Hi, I am new to the community myself but I related with your post and thought sharing my experience may be helpful. I was diagnosed with depression and anxiety 10 years ago. My GP's response was to medicate with anti-depressants and referrals to talking therapies. For short periods it did help me but the demand of society, work and home life plus maintaining relationships soon had me burning out jumping from job to job. 

In the long run I feel it only made my mental health worse until I suffered from a major depressive episode in the workplace.

I started to suspect this was more than 'depression and anxiety' and began researching into Autism and ADHD in Adults. I then received an emergency assessment from the crisis team who stated that I showed signs of being on the Autism spectrum and put a referral in to put me on the waiting list for an official diagnosis. 

I have been waiting over two years now and heard others waiting much longer. At times it can be frustrating but doing my own research to understand this side of myself has helped. Knowing my strengths and weaknesses, taking the mask i wore to attempt to fit in among my peers resulted in improved mental health and clarity.

I have come to accept my quirks and traits and plan to keep chasing up a diagnosis and started to reach out to my local and national communities for support.

Hence; why I have signed up to this community.

I wish you the best of luck on your journey.

Shine bright!

The waiting list for adults here is about 2 years, but varies a lot round the country, so I'd say >4 years is not to be unexpected.

You're most welcome! :)

Homebird said:

I was told that I met enough of the criteria to be put on the waiting list for assessment, which is very long and will probably take over 4 years.

If you live in England, then you can still request a re-referral via RTC, with a much shorter waiting time, as explained below in my earlier reply to John.

I was on the NHS waiting list for two years before my psychiatrist recommended that I switch to the RTC pathway, which I'd been unaware of until that point. After switching, I was diagnosed just a few months later. I'd have been waiting for at least another year, and probably longer, if I'd stayed on the NHS list. 

Hi and welcome to the community!

The link from my reply below explains how to request an assessment - I'll repeat it here:

NAS - How to request an autism assessment

The NAS article does include links to screening questionnaires that GPs would require. But you might prefer to use the website below for this. It provides a useful commentary for each questionnaire, and enables them to be completed online (with scores calculated for you), saved as PDFs and - if the results support your suspicions and you decide to seek a formal diagnosis - printed off to share with your GP.

The AQ-10 or AQ-50 are the most frequently used / required by GPs in support of NHS referrals. (RAADS-R might also be helpful, but recent research has thrown doubt on its validity as a screening tool).

Embrace Autism - screening tests

Could you please let me know where I can find this autism assessment, I’m autistic too?

Well, my son (22yo) has been waiting for his final diagnostic interview since February 2020 - nigh on six years. He was only 16 then, as COVID got in the way he was moved onto the adult waiting list in 2022. I've contacted our neurodevelopmental clinic, and also asked the GP to 'bump' them, and only managed to get a letter saying they're underfunded and don't want people to contact them. Oh, and that it can take several years more before he gets an appointment.

Meanwhile, he's being turned down for living and educational support everywhere, as he doesn't have a formal diagnosis ...

I've was referred for assessment around six months ago, and a friend told me about Psychiatry UK, as mentioned by Bunny, so I'm just trying to get my son (who's fed up with the whole system and doesn't want to engage) to agree for me to request a re-referral for him, and I'll ask to use  it through RTC for myself too.

If you can afford it, it's also possible to go for a private (self-funded) assessment. You'd have to ensure that the practice's assessment is recognised by the NHS, but there are quite a few places that are so that shouldn't be a problem.

My cynical side says that the underfunding is intentional, so there are fewer diagnoses and no need to invest in support models for those who need it. But, I could be wrong.

Good luck!

My experience since a referral was agreed last year was that I then had contact within 28 days and I had to complete questionnaires and go for a meeting of about 45 minutes where I was asked lots of questions about my experience, including childhood. All that went to a psychologist and after about 3 months I was told that I met enough of the criteria to be put on the waiting list for assessment, which is very long and will probably take over 4 years.

I only asked for the referral after I had difficulties at work which resulted in time off due to burnout. Apart from that, I can say I have learnt a lot before that from others on this Forum which has helped.

Thanks! 

Hi John and welcome to the community!

If you live in England, then you can ask your GP to re-refer you using the Right to Choose pathway (RTC). 

In England (only), this enables access to certain, approved, private autism assessment providers who typically have much shorter waiting lists than the NHS, but with your referral and assessment still fully funded by the NHS. You don't need a reason - this is a legal right and you would just be choosing to exercise it. That being said, avoiding a longer waiting time is a very good reason.

For example, if you were to choose Psychiatry UK, their process is explained here. You can prepare the required materials - an AQ-10 form and accompanying letter - and use them to request the re-referral:

Psychiatry UK - Right to Choose Autism Assessments > How to apply

Their website advises that their waiting time for adult RTC assessments is currently up to four months.

More information is available here:

NAS - How to request an autism assessment

There's a list of RTC providers for autism at the bottom of this page, for example:

NHS Sussex - NHS Right to Choose: for Autism and ADHD Assessment