Waiting for an autism assessment

Waiting since feb 2020 in Surrey. Phoned them up at easter and was told I would get a date this year. I was told 2 years then Covid came along.

I was recently told there was a two-year waiting list. I decided I couldn't wait that long and paid for a private assessment. Even then there was a three-month waiting list!

There is a diagnostic crisis in this country for sure and wait times can be long.

Meanwhile, however, recent studies are showing that people self-identify pretty accurately. To cope in the meantime self- identify and explore. There are a mass of resources out there from bios of late diagnosed autistic people, you youtubers and bloggers,  the odd course for newly diagnosed or pre-diagnosed people like the one rin by mind CASS to the OU free autism online course.

These things kept me sane whilst I waited for my bit of paperwork.

I feel really bad for you that you have to wait so long. I just recently was diagnosed and it took me since 2019 from self referral to diagnosis. I have one tip which is however itchy you may get, try your best to not obsess about it, however much you feel it coming on. I went through a period of itching about the unbearable ambiguity and it didn't pay off but then the organisation  which assessed me didn't adhere to their promised timescales, but then for the final stretch I dug for patience and turned a cheek and it paid off, really benefiting my mental health. I know that isn't easier said than done. Try and distract yourself for as long as you can and feel proud for as long as you keep calm about it, because you are winning if you keep calm. If you want to be or not to be autistic, and the ambiguity vexes you along those lines, then rest assured that the verdict will bring closure of one of two kinds. It is a very fateful assessment to be made and is not nice to wait upon. A less airy fairy tip would be to ensure you're clear of timescales as confirmed by the people assessing you, and if they miss a deadline, you can keep active yourself in chasing them up. That keeping active helps you feel you are keeping the process shorter than it would be were you not to chase up.

Go down the research rabbit hole.

Well done btw for identifying your autism. I was 56 before I worked that one out. If only I were 31 again, lol.

Yup! Waiting lists are unacceptably long. I went private in the end. But whether you wish or can afford that, just know this: research is saying that self identification is generally pretty accurate. By the timewe are assessed most of us are pretty sure.

Meanwhile there is nothing stopping you self discovering TODAY. Just jump on in there with the books, scholarly journals, you tube blogger and us (hey, your tribe is here and listening)... there's so much material out there to help while you wait.

I went to the GP in 2019, and was diagnosed a few weeks ago. So about a 3 year wait for me. Not sure if Covid had an impact on that. To be honest, I didn't find that wait as frustrating as it may sound. It was almost as if I was able to use that time to come to terms with being autistic, and prepare for a diagnosis, before I got an official diagnosis. I don't really have advice as such, but your life continues, you can get to understand yourself better, without a formal diagnosis.  

Thank you all for your advice and sharing  how long you have had to wait for assessments. 

Today I received letter from the diagnostic service saying I am on the waiting list and some forms to fill in and send back to them. 

I think one of the biggest things for me is the waiting and uncertainty. 

I think waiting times vary quite a lot, my mum recently got a phone call from a place she had phoned a few months ago to say that I could get started with the assessment process shortly. I am not sure when she first got in touch with them but I would probably say January or February, which would make it 6-7 months for me. Word of caution though, I am unaware but this place might be private so my parents might be paying for me to be seen quicker I am not sure. 

As far as advice for coping I found it quite helpful on this website to look at the details about the assessment (the types of test they will do etc.) I think I am a lot less worried now than I was a few months ago about being assessed as I sort of know what to expect. I also took some online quizzes such as the Aspie test but they are obviously not a substitute for diagnosis and I just found it interesting to see roughly what my traits were like (I'll attach a screenshot of the score I got on the test as an example.)

I don't have the info they give you after taking the test but I think I scored 160/200 for Aspie traits and 40/200 for Neurotypical or something along those lines. The website is quite cool as you can go and look at a bunch of studies on the various traits the test is looking for.

Your not alone I am going through a similar thing at the moment. I'm a similar age and in May I rang the doctor and said I would like to be referred for an autism assessment and after I went through the reasons why then my doctor agreed there was more than enough evidence for a referral.

I had a letter to say I had been put on the waiting list last month. They've said there will be about a 19 to 20 month wait. I think for the time being I am coping. I don't feel overwhelmed at the moment but I do wonder how I will get through the next 19 to 20 months with this hanging over me. 

I already knew enough to question whether I had autism because of my job as a teaching assistant and having done a primary education degree. I think in time I will start reading and researching Autism more. Apart from this forum I haven't really watched or looked at anything as I come to terms with the possibility I could be autistic.

So yeah there's quite a few of us out there in this same position. I think for me I'm just going to have to break things down to one day at a time. I think the way I'm going to cope and get through this period is by starting my Masters degree in September and working hard on that. 

Hope this is good for you to read just to know that at least one other person out there knows what your thinking/feeling. 

Hello,

I got referred by my GP after requesting this in May 2021. I got a letter/email in May 2022 asking to register with the team who would be conducting my assessment. I had the first part of my assessment a couple of days ago via video link. It was scheduled for 3 hours and 15 minutes. It would have been in two parts, however I didn't have anyone to attend the appointment with me (family member/close friends). 

I've been advised that the next part of the process will be the clinician speaking to the next person who will be conducting the next part of the assessment and then sending an initial report. I'm not sure when the next appointment will be. People say it takes another year, some say months and some say weeks. Like someone else said in your thread, I think it boils down to where you live and who the NHS use to conduct autism assessments in your area. I have come to accept that it is a long process, so I try not to dwell on it too much.

I too read a lot about autism and have in the past been told I identify with some of the characteristics of someone with autism. I understand that it can be difficult processing this after taking the step to seek a referral. I used this forum a lot initially, and still do. I also have an association that I joined at work that is for neurodiversity which I have found to be a help, even if it was just to be able to relate to people and see that I wasn't alone in how I was feeling. I've found this forum and the one I joined at work a good place to get advice. 

That's the only support I have really sought out other than following other neurodiverse people via social media. Through these channels I've been able to understand myself a little more (as silly as that may sound). Hopefully your work has the same sort of channels you can seek support from. I believe there are lots of books to be read and groups you can also join, but I guess its what works for you.

Hope this helps.

Hi, I got referred last December, I received a confirmation letter two weeks ago and some forms. The letter states that the waiting time is approx two years from when the forms are processed, that’s only if they think an assessment is in my best interest.

I wanted an assessment straight away when I realised that I’m autistic, you sort of grow into it all and I’m content to wait now. I spend a lot of time now researching autism and getting used to the idea of being different. Use the time to working out what really affects you, how you can adjust to your new way of life and know that it’s okay to act and be different.  I get what you mean about an unknown wait. I would be quite happy with a definite date, even if it is two years. It’s the checking the postbox every night not knowing when it will be. I need to exactly know when things are going to happen. 

i got assessed within 6 months on the nhs. i think a lot depends on where you live.

The system is very slow. You're in the right place though for getting advice and for knowing that there are others who understand you. Having said that, you also have to turn a blind eye to any negative comments people might post. Look for the positive if possible. Have you thought of thinking about what issues you have and then looking for books, articles or podcasts that have ideas for that particular issue? For example, if you struggle with anxiety, you might like to try CBT ACT.

Ah let me see they would have put me in for my assessment early 2019 I think, maybe earlyer,  and it was something like mid 2020 when it was finally done