Getting autism diagnosis on NHS

[workingmumuk]

Anyone done it recently? What did you have to do? How long was the wait?

I think I'm Autistic & ADHD but my social skills are so rubbish that I can't actually formulate how I would ask my GP for this.

Desperately need a diagnosis so my work (who are being amazing at putting up with my 'quirks') can make the proper reasonable adjustments...

3 years+ for adult assessments in my trust. I tried going via university when I felt I needed to know (I was a mature student) but after a year and a half of waiting I was nearing graduation, so paid to go privately in the end.

4 years wait here, or £2k +++ for private 😭

2-3 years wait in Yorkshire. My symptoms worsened rapidly after having kids and I was struggling to cope. I requested assessment so I could access support and reasonable adjustments. Then had to wait for years with no support and no adjustments because I wasn’t eligible until I got a formal diagnosis. It’s ridiculous.

Whilst on the waiting list the NHS said they had to check up on me regularly to make sure I was coping with my worsening symptoms in the meantime. So they phoned me once every six months for less than 60 seconds, and said “has anything changed, are you going to kill yourself?”. I said no, then they hung up and called back in another six months.

Bear in mind that I had severe enough symptoms to warrant being referred to the mental health team in the first place, and I had gone to my doctor in great distress because I was struggling massively. And that’s what I got. A 60 second phone call once every six months and just stuck on a waiting list and ignored for over two years. I often wondered what would happen if I said Yes on the six monthly call asking if I was going to top myself. I was tempted to say it, just so I could get some treatment and support.

This is awful @Raddix - so sorry you've been through this experience.

I have found things have got a lot worse after having my daughter, since I'm sound sensitive and kids are loud!

I have been wondering whether even asking NHS is worth it... but I urgently need it so work can make accommodations for me.

The waiting lists sound awful!

You won’t get a diagnosis urgently unless you have thousands of pounds to spend. Otherwise you might as well get on the NHS waiting list and tell your employer you aren’t gonna have a diagnosis for years.

@Raddix have you managed to get a date for assessment yet or still waiting?

I got diagnosed. It was nearly 4 years for me because Covid fucked everything up. Normally it’s 2-3 years.

I went to my GP and was looking at a 3-4 year wait to be seen by my local trust. However, I was referred to psychiatry UK under 'right to choose', so was seen in 9 months. They're a private provider but it is under NHS thanks to right to choose. Once seen by the psychiatrist I then had to wait 5 months for meds, as you're assigned a titration nurse, for which there is also a waiting list. Although I was lucky enough to be ok with this as had started hrt and didn't want to start 2 different meds too close together.
Definitely worth getting your GP to refer you op, and if the waitlist is huge ask to be referred to psychiatry UK/provider of their choice under right to choose legislation. Good luck!

Apologies op, this was in relation to ADHD. I haven't pursued autism diagnosis as it was the ADHD symptoms that were causing all the issues I wanted help with (including access to medication!)

I waited less than a year in Hampshire. The waiting list had got so long over covid they paid a private company to offer remote assessments to help them clear the backlog, so I actually was seen much quicker than I expected.

Process was:

E-Consult to GP saying I wanted an assessment
Phone call from GP asking me to give a few reasons why I thought I needed the assessment, then I had to complete a really short questionnaire for the GP, they then agreed to refer
Received letter saying I was put on waiting list, at that time the waiting list was about 2.5 years
About 9 months later....Phone contact from NHS asking for permission to pass on my details for external assessment
Phone call from assessment company offering appointments
Completed a series of questionnaires, very detailed
Appointment 1 (with psychologist?)
Appointment 2 with consultant psychiatrist
Email received with assessment report

This is SO useful @Jenn3112

The unknown of the process was stopping me from even trying!

I posted on here before that in my area I was firstly told no assessments for adults then told there was a strict criteria . I was only able to submit a brief explanation on an E consult where autism isn’t on the list of ‘conditions ‘ so I had to use the anxiety box . How can you not meet the criteria when your GP doesn’t call you or ask you about your symptoms . I am like others on this thread and looking for a diagnosis to access support and changes and also because the older I get the more I struggle in the workplace particularly with new colleagues where I have to mask all day which feels like torture . Ironic that I work somewhere where I have to advocate for others that I now would love someone to do that for me as I just don’t have the fight on me to keep going back to the brick wall which my GP puts up . Going private isn’t an option for me due to the costs .