The Autism Diagnosis Process in the UK (From Autistic Adults)

Hey, 

My name is Ruby and some of you might not know but I have Autism. I was diagnosed when I was 22 (I'm now 23) and after a 4 year process of diagnosis I finally got my letter and now talk openly about it online. Through sharing my experience many friends, family and strangers have asked me about what they should do if they feel they may be Autistic or are showing Autistic traits. I have made a video about my journey which I will link below but I wanted to do a simple blog post to share mine, and other Autistic adults' experiences. 

https://www.youtube.com/watch?v=JEHTC2VnRKA 

You may notice when reading them that they differ, this is because each service is different and can be affected by funding in the area, your age, gender and medical history. This is why I wanted to give several different accounts so you can see the similarities. 

I will be sharing my experience from being diagnosed in Plymouth (note every single person will have a different diagnosis story). 

(Verrrrrry short version) - I wish it was that simple. 

• Did online test, scored highly likely 
• Told my GP, did another test 
• Scored high enough for referral 
• Got appointment with psychiatrist 
• Had to go back 
• Got a formal diagnosis 

I moved to Plymouth to study at the University, and during my first year I was placed into halls. Autism was something I had a particular interest in having dated a boy on the spectrum and started researching into it so when channel 4 did a program on Autism which was accompanied by a test you could do at home, my flat and I all took it. I seemed to score very highly on this test (all it meant was I may need to see someone if I was interested further and was no way an official diagnosis). This then became common knowledge in the flat and we started to really notice how many traits I was presenting. We would make jokes at my expense which really helped me process the fact I could be, it was never ever a negative thing for all of us. 

We often discussed me going further with the test but I was too afraid to speak to my family about it as I didn't know what the reaction would be. Come the end of first year and I took my mum to go see the touring production of The Curious Incident Of the Dog in the Nighttime. When watching I saw so much of myself in Christopher the main character (who is believed to have Autism although never stated) and I simply brought it up to my mum that the flat and I thought I could be Autistic. She didn't understand at the time and simply laughed it off thinking I couldn't possibly be because of my communication skills. I put the idea to bed for a bit. 

Come second year and things got hard, I struggled hugely with my sensory overloads and it was beginning to impact my degree. I started discussing the idea that I may be on the spectrum with my councillor who definitely agree and said it was worth me being tested. I called my doctor and told them I thought I had Autism and nothing happened. I put the idea to bed once again. About 6 months later after looking at the pricing of private testing I knew I had no other option but to try my GP again. 

This time I had a phone call with the Mental Health nurse within the surgery, this was my first step as she agreed straight away and sent me in for a face to face meeting. I say meeting, when this happened all I did was fill out a checklist sheet to see if I got the minimum score for testing. I did and so he said he would refer me. 

This is where the problems started. I didn't hear from them for months and months, something that is common in the process but not great when you have high anxiety and it was hard enough to go to the doctors. I think I called 30 times trying to get through, first I had the wrong number, then wrong department and then they wouldn't pick up, or would lose my address. It felt like one thing after another but I wasn't going to give up. I finally got an appointment! Which they cancelled and didn't tell me about....oh.

Another 6 months down the line and I had an actual appointment but not really much information about it. I showed up and got told that a questionnaire should have been sent to me, of course, it hadn't. This meant everything would be delayed further. I did an initial meeting where I left in tears, feeling defeated as the doctor told me 'But you can communicate, you have a nose ring and nice clothes'. I knew that females differed to males, but he didn't seem to. I was sent away with my questionnaire and didn't hear a thing. 

Guess what, another 6 months down the line I'm called for an update appointment, apparently I was supposed to be told earlier but shocking, I wasn't. Over this time I had approached the topic with my mum again and it took her a while to understand but once she did she turned into my biggest support. She said she would drive down from our home to come with me. During second meeting I got told I should have brought family the first time, again this wasn't communicated to me. After speaking to my mum, further rude comments about me and an hour later we left getting told I would receive a letter saying if I was Autistic. I waited and waited. Until one day I went to the doctors for a completely unrelated thing and saw on my notes it said ASD. They knew something I didn't, I called the next day requesting my notes and turns out I had been diagnosed 2 months after the 2nd appointment and you guessed it, no one told me. We never got any of the support promised, we never heard from them again. 

So after battling and being completely burnt out from the process I'm out the other side. It was one of the hardest things I've done, but to have that diagnosis, to understand myself and feel grounded and understood. That means everything and it made it all worth it. 

I'm sorry my experience wasn't simpler, or happy, but that's the truth of the current system. It's long, it's shit but it's worth it. 

Others experiences: 

(female) 

I was diagnosed at the end of February this year aged 22 (now 23). My mum started to think I was autistic from the age of 14/15 when she was attended conferences about autism in girls because my younger sister had just been diagnosed. However when she went to these conferences, some of the speakers stories related to me so much that she went and spoke to them at the end and asked what to do?! My mental health was awful at the time and I wasn't in the right place to look into it. When I was 22 and had just started my second year of university, I was much more aware of my differences and my social struggles. I started following female autistic advocates online and realised how much I related to them. I had an appointment with a psychologist who came to my uni once a week. She got me to complete the cambridge autism Spectrum quotient (?) And another questionnaire and she told me that from these results, I was eligible for assessment.A couple of months later I saw my GP who got me to do a 10 point questionnaire and then he referred me to the local diagnostic organisation (NHS). 7 months later I had my assessment and was diagnosed with Autism Spectrum Disorder. 

 

(Male)

1. Go to the GP and talk to them about getting a referral.

2. The Dr will then refer you to the wellbeing team if they feel you qualify (this fact really annoys me, as there are GPs that could do with autistic awareness training).

3. The wellbeing team will then call you on the phone. Yes on the phone for a chat. They ask a load of questions which they will have a check sheet for. This is supposed to be a triage style thing, but is essentially another gate keeper that you have to pass in order to get to the next stage.4. If the wellbeing team phone call goes in your favour, they will then put your name on another waiting list, to have the first face to face meeting with one of the autistic diagnostic team.This is another load of questions about your life and why you think you could be autistic.Once this meeting is over, you will then receive a letter once the team has met to discuss your case. If they feel you qualify for the next round, you get invited to the diagnostic centre.

5. The diagnosis assessment centre usually invite you to three separate meetings, the first two to ask you yet more questions, similar to the ones in the for face to face. The third session is when they go through the results with you. I had all three of my final sessions on one day (which burnt me out no end), and was told I was autistic in the final hour long session.

6. I then received my paperwork through the post.

 

(Female in between services)

Hi, i seen your story about being diagnosed. I was being assessed when I was 17 and got diagnosed at with autism spectrum disorder at 18, I am now 19. My autism makes me uncomfortable talking to strangers sometimes and for some reason I am more shy with other around my family but during the assessment I felt really uncomfortable mainly due to the fact I was under 18 (17) therefore classed as a child and had to do the assessment they do for those under 18 and I was uncomfortable that I had to do tasks a young child would do but I understand that's how the system worked. My mum also had a session of giving information and we didn't get the result until months later but we knew I was on the spectrum so it wasn't a surprise it was just a lot to take in.After being diagnosed, we were told (me&mum) that we would receive a phone call in a few months about what help i could receive. We never got that phone call. Then when I went to my physical examination my mum asked if there was any help towards my anxiety due to my autism, as we didn't know what to look for since I was classed as a child when being assessed but am now an adult. The lady was nice and gave us a place she knew off. So my mum phoned them and we received a latter saying I was on the waiting list. No more than a month later I got a letter saying I wasn't qualified for help at that place, so now we are back to square one on finding help that isn't medication because that is our last option.

I hope this helped at all, 

Love you all, 

Ruby xxx