Do I do it?

You should seek a clinical psychologist with experience in diagnosing adults.

As an adult, female and with a developed ability to mask, an assessment by someone just seeking to 'tick the boxes' is likely to lead to an unreliable diagnosis.

I am early 50's and am on the waiting list for full diagnosis.  I am quite happy not knowing everything BUT my employer and actual Damagement will not recognise it without a diagnosis in writing (YES I KNOW THE LAW) .

 Back when I studies, my UG years were not an issue at all and a good friend was open about his Dyslexia with the department after failing the first year without that known.

Getting that diagnosis, as mentioned by others opens up more support and maybe even Access to Work/others can help in the future

Thank you for all your replies, you've all been so helpful :) 

I was just wondering what the best list would be for female autistic traits? So I've got something I can check through as good points to bring up with my GP and specific evidence of traits I express. 

Also, would having a formal diagnosis mean I have to declare it, for example, to potential employers? Or would I still be free to disclose that information as and when I wanted to? 

Thanks for all your help :) I've been building myself up to approach my mum about wanting a formal diagnosis as she'll be my main support throughout the process... logically I know I should have to 'build myself up' to it, but the idea still makes me nervous! Hah! :/ anyway, I'm pretty sure I'm going to go for it, then even though I probably won't be through the system before starting uni at least I can say I'm in the process and they'll hopefully be able to give me the right support. 

From my own experiences, I'd advise caution on relying on general services such as counselling to support you with the challenges you face as they are aimed at NTs and not how the ND mind works. I accessed these at uni and found them to be pretty useless TBH.

If you were to receive a diagnosis and applied for the Disabled Students' Allowances you could access an autism mentor who'd work with you to develop coping strategies for the things you find challenging. 

If you are interested in a diagnosis I'd write to the disability departments of the uni's you're looking at studying at and ask them what their processes are for students seeking a diagnosis. I work at a university where we will pay for your assessment and you can sit this in just a  few weeks after the initial enquiry, however, most uni's aren't like that.

I found school and college a breeze as the workload was limited and the social interactions wee simpler. University, especially my UG years, were significantly harder to cope with.

The wait for a diagnosis will not necessarily be for years as some here state, I only had to wait for 15 months and it all depends upon which NHS Trust you fall under.

I believe it would be worth going for a diagnosis and I would certainly ask your doctor if there is anything he could do to speed things up a bit as you are starting Uni this year.( I may be wrong but I believe the fact that you are so young is very much in your favour with regard to waiting times-don't quote me and please do not put a curse on me if I am wrong!)

When you get your diagnosis you will be able to discuss with your assessor whatever assistance on offer is most appropriate for whatever shade of ASD is determined. This might be a bit tricky to arrange if your Uni is far away from home but some form of counselling to help you with any difficulties you may face trying to fit in and have a normal student life would be beneficial, just having someone to talk to who understands how the condition affects us and how best to deal with it would be great even if you were not going to Uni.- obviously, the more we know ourselves, the better equipped we are to deal with life.

At the age of 20 you will still be trying to work out how to find your feet in this world and this is tough going-even for many NT's, when you're on the ASD Spectrum too that usually just multiplies the complications. I am not trying to scare you, I just urge you to give yourself every chance of the success I am sure you are capable of and enjoy it for the fantastic experience it most certainly is..

Thanks for the advice :) a lot of what I'm debating over is what will I actually gain from getting the diagnosis, since, as you and others have said, the uni will likely do their best to support me either way. And the help I can't get without a diagnosis, such as the exam concessions, I don't necessarily need as other than not being able to read well if I'm tired, I've never struggled with exams. Combine that with the amount of time it'll likely take me to get through the whole process, meaning I probably won't even have a diagnosis till I finish my course. I want it to be able to say to myself and other 'this is who I am' kinda thing without anyone being able to say otherwise, but I already know it and have accepted it in myself, and without a diagnosis I feel I almost have more freedom in whether I choose to tell people or not, where as with one I'd feel almost obligated to disclose it even if it impacted me negatively. Like once it's all written down and documented, then it's really real! 

Anyway, the uni, yeah it'll be a huge change for me, but I've already taken two years longer than other people my age to get there and I'm not too worried about the social side of things since the one thing I'm interested in and could talk for hours about, is what the entire campus I'll be on and all the courses there are centred around, animals! :D so I'm looking forward to it really, just think it'll be difficult settling in properly as even tho I'll have accommodation there, I'll still be travelling back home for a few days each week to keep on top of the animals I have here, which is gonna be super stressful :/ 

I'm not in the habit of telling anyone really about me being autistic, I think that's mainly down to the lack of a formal diagnosis making me feel less valid, but maybe I should be more forward in mentioning it at uni? Would I be able to say I'm autistic and would they accept me as autistic without a diagnosis tho? 

Hi there,

As a 25 YO (fairly) recent graduate (now postgraduate student)  I can relate to what you wrote, especially the part about 'how good I've gotten at acting 'normal' for the small amounts of time that I have to'.

I think the others have elaborated on the diagnosis process as well as pros and cons well, though I can add a bit about life at uni.

While it's true you could get more concessions, like extra time in exams, etc. if you have a formal diagnosis, but of course the uni will support you with or without one. Any problems you have, be it trouble settling in, work, social or mental health issues, reach out and they will help you. If you did choose to go down the diagnosis route, you would not have a formal diagnosis in time for your September start. That said, you can still discuss with your GP, who will refer you to an adult mental health team. At this point you can ask they write a letter explaining that you have difficulties with certain things, without having the formal diagnosis, if you feel / find that this helps you get more support. Though as I said usually this will not be required for basic help.

Myself, I have started the diagnosis. I got the introductory assessments from the mental-health team fairly quickly and didn't find it strenuous. It's the psychiatric assessment I have been waiting for about a year for now, waiting lists are long, but I can still talk to the doctors if I have problems, which is good as they are helpful.

It's sensible that you're thinking ahead to issues you can prepare for now, but you shouldn't fear going to uni. I personally got on a lot better there than previous institutions as everyone was just more grown up and welcoming. There's no reason why our condition should stop us having a good social-life at uni, my only advice would be to spend time with people that you feel you can be more yourself with, so you don't have to put on a show all the time for. Avoid people who seem to expect too much... I spent too much time with people who always expected me to 'hang' with them for hours after I had run out of steam for their meaningless chit-chat and would be offended if I went quiet or made excuses to not be there. Either that or people I felt weren't interested in me as a person and I had to constantly put on a show to be acknowledged. We have limited capacity for socialising so spend it with those that deserve it, that way you'll get the best experiences and make good friends :) 

Plastic pretty much nails it...

I recently got diagnosed at 47 - seeing a clinical psychologist privately as the wait for an NHS assessment was 20 months.

Now, there's a key question (that I was asked) - Why do you want a diagnosis? For me (like Plastic) I'd pretty much always been able to cope/mask, but the strain was getting to be too much so I needed to understand...

a) why and

b) what to do about it

... of which (b) was more important. So now I'm into talking with my psychologist about 'functional utility' i.e. how I can function 'better' now that I have the knowledge that I definitely am on the spectrum.

If I wanted support from DWP or my employer to make 'reasonable adjustments' then a private diagnosis might not 'cut it', but I don't so that's why I went down that route.

In terms of cost, not huge - certainly not the £2-3,000 that NAS/Lorna Wing centres quote. Less than the cost of a week skiing.

It's helped knowing 'for sure' that I'm autistic (low support, high functioning) even though I was always pretty sure I was...

Plastic said:

Getting a diagnosis is a very personal decision and you need to weigh up why you want it and what you think you will get from it because, as you say, it's a long process

I agree with plastic. As an adult, getting a diagnosis is a very personal decision. I also think that there are a lot of factors to consider - especially, what was hard for me to make the decision was (1) change: I find change difficult to process, if I get a diagnosis, than that itself is a big change, and I might have trouble dealing with it. E.g., I might feel sad about missing out on opportunities when I was a kid, I might feel sad that once diagnosed I can never be undiagnosed. I might worry that social interactions might be different if people found out about my diagnosis. These are a few examples of why this change of diagnosis status might be difficult. It's also possible that one might end up with a negative diagnosis, and this would be a challenge to what one had previously believed in. (2) waiting time: this was a big consideration for me too. I had to wait for 2 years, and there were so many problems with the administration for the diagnosis process (definitely not autism-friendly). It was extremely stressful, having to go to many different appointments, being ignored and not taken seriously, waiting and more waiting. I only got my diagnosis at the very last few months of my degree (and according to the waiting times being 2-3 years, it's certainly possible that I might have finished my degree before I could get my diagnosis). (3) being mentally ready: Although I had thought about getting a diagnosis before I started my postgraduate degree, I waited until I a while into it before deciding I was ready. The reason was that starting a new degree itself requires an extremely large amount of attention. Most of my time and effort was put into adjusting to a new environment, working hard on my course, meeting new people, etc. And pursuing a diagnosis was just too much mental effort to add to the business at that time. Even after I felt I was more mentally ready, having to deal with the bad administration and long waiting times was still very stressful, and actually had a negative impact on my studies. 

I also sympathise with your feelings, about how the diagnosis seems to fit, and that adapting to adulthood seems harder and harder as social demands increase. I think going through the diagnosis myself, had both pros and cons. Cons include all the stress due to the worries about dealing with change and the stressful long waiting times, which had a bad impact on my studies. Pros, I think it has helped me better understand myself, about why some things were difficult. Also I feel relieved and more optimistic about the future. Although I was't able to get any support from the university due to the long waiting time, I feel that maybe the diagnosis could be more helpful in the future if I need to tell employers. 

Hi

Getting a diagnosis is a very personal decision and you need to weigh up why you want it and what you think you will get from it because, as you say, it's a long process - which means you'll have finished uni before you get your diagnosis.

As far as I know, if you talk to the uni support team, they will do everything possible to try to help you - they really don't want you to fail as it dents their stats so I'd have a chat to them and tell them you're looking at diagnosis.

I'm 53 and was only diagnosed at 42 - I thought I was coping but I'd reached the limits of my ability to mask and cover up my deficiencies so cracks were beginning to show.

Internally, I still feel that I'm only 16 so I'm aware that all those around me seem to be so much more complex in their social interactions - I feel like a child - but others say my attitude to life is refreshingly simple and straight-forward - and my peers all appear to be soooo old in comparison.

Girls are generally much better at playing the social games so are much harder to diagnose - I'd have a read of the topics that come up on here and see if you feel it chimes with you.  You wiil see a lot of common themes.

In my analysis of myself, I have measured that is all boils down to the inability to deal with stress - and the stress is caused by chaos - unpredictable people, situations, out-of-control events - in fact anything where I am not 100% sure of the outcome.  The more unpredicatable the situation, the more stress I feel.  It impacts upon everything - like wanting to be alone (away from chaos) to hating social situations (too much unpredictability) to stress at work (unclear management decisions and poor instructions) etc.

The rest is over-stimulation - too noisy, too bright, too many people, sensory overload caused by clothing, smells etc

And then fatigue - needing down-time to decompress and process - this is exhausting.

A lot of people go on about various on-line tests but the results can be hugely variable depending on your state of mind when doing them.

If you're thinking about diagnosis, go and see your GP with some of your basic evidence - and they should refer you along to the professionals.  I'm told the whole process can take up to 2 years - so time is of the essence - the sooner you see the GP, the sooner it all gets moving.

Good luck.