Diagnosis seems hard

Thank you!

Yeah I completely agree it is disappointing that so many of us have this experience. For me and a lot of others, our autistic traits were noticed but we weren't assessed because we 'seemed to be doing well' at the time but that is pretty ignorant IMO, because a lot of us are very good at hiding difficulties and then things are not addressed and can get much worse. 

BTW I found out the other day that my college covers the cost of private assessments. But I didn't know that so I needlessly waited 10 months to do my assessment for free through the NHS  However I think this is unusual, due to my uni having a college system. 

Hello, 

I'm a lot older than you but had similar experience when I started Uni as a mature student. 

Yes, DSA will give you an assessment of need for free but you have to have a formal diagnosis for that. Depending on where you live you can self refer for an autism diagnosis so have a look at your area and see if you can. Yes there is a waiting list but if you can be flexible with last minute appointments you can be seen sooner.

Also, if you have anxiety you can see your GP and ask for a supporting letter for Disability services at Uni, they will refer you for an assessment of need from DSA based on that. It is quite similar to the support they offer for Autism anyway and the process can be started atriaght away.

Good luck in your degree.. :) 

E.D. is not the issue that this post relates to... :-(

Ahhh, so it did! I just saw this so apologies for the late response! Maybe there is some sort of link there with wanting to understand people better, quite a bit of it genuinely confuses me and I find myself being like "but why???" semi often hahaha 

I think you should definitely go along if you think it'll be beneficial for you. I know most people in the community tend to recognise self dx as legitimate (even if not formal) because a lot of us understand how difficult it can be to get a diagnosis, so I hope that you can find a place you feel comfortable there

Ah, your first reply finally came through!   I feel similar about studying psychology, but yeah, I guess sociology is even more about how human's behave, specifically in social ways! I wonder if there's a connection between spending so much time working hard to understand others and now wanting to learn more deeply in that area!

And yeah, I also understand the feeling out of place in autism support groups without a formal diagnosis. I'm unsure myself too, but do fancy going along to one. I saw a meet up planned for February, so I might try and go along and just say hi to people, we'll see!

Oh no!!! I hate it when that happens! I wonder why!

Thank you for your encouragement - I really appreciate that because sometimes it’s much easier to focus on the things we’re not doing so well at and feel like we are mostly failing. So I appreciate the reminder that I’ve made it this far and that’s awesome!  

That’s great about your friend. I will try to reach out to my uni too!

Cool - I’m studying psychology, and I previously studied theology! 

I find it super interesting how many of us have similar experiences, it always makes me a little bit disappointed that for so many autistic people it's brushed off or not picked up on until much later. I'm glad you could get diagnosed though, congrats 

Anyway, I appreciate the answers very much! It helped me a lot. think I will go to my GP and ask about getting a referral and hope the waiting lists aren't too bad.

My university did give me the option to be assessed for traits of other specific learning disabilities through them, and said they could look for autistic traits at the same time which could still help accommodate my education. They said it wouldn't get me any closer to diagnosis though. I told them I'd keep it in mind as an option, so if the NHS waiting lists are too long I'll probably get back in contact about it so I can at least have a little bit more help because I know I'll need it (especially in my final year). I'd rather not go through more than one assessment process if it can be avoided, though, as the thought of it is very daunting. 

Maybe so, but if this is the case they definitely should have made it clearer lol 

The first paragraph could have been written by me. I'm your exact same age and just got diagnosed for the same reasons.

Yes, universities can diagnose other conditions like ADHD and dyslexia but not autism unfortunately. So you need to talk to either your GP (to get referred through the NHS) or a private diagnosis service. If you get referred through your GP it will be free but depending on your area there might be very long waiting times (I was lucky, it was less than 1 year but in some places it's like 4 years). The cost of a private diagnosis varies a lot, I think the minimum is about £250 and it would be done within a couple of months rather than years.

It's a lot, but it's worth seriously considering, because being on a waiting list can drive you a bit crazy if you're constantly questioning yourself. Peace of mind is valuable too. And if you want additional support from uni, it's no use being diagnosed after you graduate.

Having said that, you might be able to get similar benefits in the mean time (rest breaks in exams, equipment for recording lectures, 1-1 support) from a different diagnosis e.g. anxiety or OCD, which are very common in autism.

Don't worry about asking your GP. Mine was very helpful and didn't ask any difficult questions.

Sorry that's long, I hope it's helpful.

Hi! I wrote a reply to this yesterday but it got flagged as spam and I'm not sure if my appeal will work, so I'll try not to make this one as long and hope it stays up

Thank you for the response! Knowing other people are in very similar situations makes me feel less alone, and I can't imagine how hard it must be to be thrown into a proper job with no real support or accommodation so well done getting this far!

You should definitely have a dig around on your university website and see if they offer diagnosis support. Even though mine wasn't particularly helpful how I wanted them to be, I have a friend whose university managed to refer him and get him diagnosed pretty quickly so it very much depends on the university and the amount of support they offer in the area. My university did suggest that I could get assessed through them to look for traits of specific learning disabilities (ADHD, dyslexia, etc) and they could look for traits of autism at the same time. However they told me this would not get me any closer to an autism diagnosis, just possibly help to accommodate some things in my learning. Personally, I find the thought of undergoing one assessment anxiety inducing enough (I also find it nerve racking to take myself to the GP ) so I'd rather try to get a formal diagnosis and go from there when it comes to university support, fingers crossed waiting lists in my area aren't too extensive. Best case scenario is I can get diagnosed in time for me to get some accommodation when it comes to writing my dissertation in third year.

I appreciate the book recommendation, and I will have a look into it to see if I feel it would help me

Also, I'm studying sociology! What about you?

It sounds to me that the university team will do it  but they just need your GP referral first. Probably because otherwise they could end up assessing most of the student population, most of whom wouldn't need one. And their resources won't be infinite. 

Yes, NHS waiting lists are hideous and might never kick in before your graduation. But see your GP and ask for a copy of their referral letter.

Then, give that to student services, who can then short cut the system and get you an assessment. 

If it's any comfort, I have  colleague who didn't know until she did a university course as a mature student and the Univetsity picked up on it. She was assessed by their in-house team

Thank you so much for this response, it makes me feel less alone to hear about people in very similar situations! I can't imagine how stressed I would be jumping into a proper job, so well done for even getting this far with no real support!

You should definitely reach out to your university's disability support team, or even check your university's website. Scour their disability section, I know things on mine were sometimes a bit hidden. Even though my university wasn't too helpful with what I was looking for, I have an autistic friend whose university was very accommodating and managed to get him through the diagnostic process very quickly, so depending on your university they could be quite useful. 

For me, the team suggested that I could apply for an assessment where they look for traits of specific learning disabilities (ADHD, dyslexia, dyspraxia, etc) and during the assessment they could "look for autistic traits," which could help accommodate my education, but would not get me any closer to diagnosis. Personally I feel that having to undergo one assessment is anxiety inducing enough, so I'd rather just see if I can get diagnosed through my GP for now. I'm hoping if I get on it quick enough the waiting list will be short enough that I can at least get some extra accommodation during my dissertation once I'm in third year.

I might have a look into the book you suggested and see if I feel it would be helpful, thank you for the suggestion! Right now I feel a little out of place looking into support groups even though I feel pretty confident in my 'self diagnosis' lol, but maybe some time in the future if I think it could help me to meet more autistic people. I live near a fairly big city, so I'm sure there's a few dotted around.

Also, I'm studying sociology! Maybe a little ironic since part of autism is not understanding how (neurotypical) people work and sociology is the study of human social behaviour & interaction, but I find it pretty interesting for the most part even if it's very unrelatable  What about you?

Hi,

I’m in a similar position but a little bit older and struggling about 3 months into my first “proper” job. I also had thought I would never feel it necessary to have a diagnosis (I first thought about autism as a teenager but my parents were very “anti-labels” so I just parked it and decided to get on with my life as best I could). But now, I’m just not handling work (and colleagues) so well even though I really love my actual job. But I am also studying a Master’s, so will look up any information from my uni disability services to see if referrals for diagnosis are a thing they offer and let you know. So far in my searching I haven’t ever read anything like that.

I would say go for it as waiting can only make it take longer. Having said that, I still haven’t gone to the GP myself as I feel scared to but not sure why.

The other thing I think would be good is finding support anyway. Can you ask your university disability services about the kind of help they could offer you anyway, and explain what it is you’re struggling with? Also, have you looked to see if there are any autism support groups in your area? Lots of the ones I’ve seen in my area don’t require you to have a diagnosis to attend and it might be helpful to meet any talk to others with helpful experiences. And finally, there are some good books out there as well. I don’t know what exactly it is you’re struggling with but a book I’ve found really helpful so far (even though I’m only part way through it) is ‘The Guide to Good Mental Health on the Autism Spectrum.’ It has a good blend of theory about autism to help understand ways your brain might be working in certain situations, as well as practical tips to reduce negative mental health problems such as anxiety. Though I know, finding time for extra reading while studying at university is sometimes impossible (hence I’m only part way through this book).

I hope some of this helps, and also that you’re able to find support before either graduating or dropping out. What are you studying, by the way? ️

I imagine it'll be longer even for the shortest of waiting lists because of covid, but hopefully I am this lucky too! I'm happy you got your diagnosis, it must have been a relief 

Got a NHS referral from my GP in early 2019 and about 7 months later I had a diagnosis.  I seem to have been very lucky to be processed so quickly.