Newly diagnosed

Hi, I'm Sarah and I received my autism diagnosis last week. It's been a huge relief, like everything about me finally makes sense. I'm also feeling a bit lost though. Very few people in my life seem to understand just how significant this whole process has been for me, and everyone seems to want to tell me how they think I should be feeling. The overall attitude seems to be "you don't need a label, just get on with everything as normal" which is so frustrating because it completely minimises the day to day struggles I have.

I'm at uni at the moment and the only outlet I have is weekly counselling, which has been really helpful but there's so much pressure to miss sessions when they clash with other things (I had to miss three weeks of counselling before Christmas due to a really intense workload and ended up severely burnt out). I've also had a massively stressful couple of months because I've had to move into new accommodation and I really struggle with change. But I received no emotional support with that, despite explaining my difficulties to staff. To be honest, disability support at uni hasn't been great either and I keep having study skills sessions cancelled at the last minute.

I just struggle with people telling me to take time to process things, but then they'll turn around and say "as long as it's not too much time". I had a support plan put in place that clearly states I need to take breaks due to sensory overload, but this is usually ignored and I'm made to feel like needing a break is an inconvenience to everyone around me. It's like people never mean what they say.

So the diagnosis has been amazing for my own understanding and acceptance of myself, but I wish other people were as understanding.

  • I love your choice of profile name, welcome.

    Many UK Universities hold a day / week of Autism awareness events during April (e.g. 2nd of April, or the first week of April).

    Just in case your Uni isn't doing anything - there is a UN / ION / World Autism Awareness Day (WAAD) livestream event on the 2nd of April which may include some topics of interest:

    ioneurodiversity.org/.../

  • Hi Sarah, welcome to the community. I would have thought universities would be better equipped/educated with neurodivergence, sorry to read about your struggles. There is a long way to go on education and awareness unfortunately.

  • Hello, welcome to the community forum.

    Really sorry to read you're struggling with people not understanding. My diagnosis was ignored and I was bullied.

    I can relate to this as I try to explain several times to people I go to a women's institution (non mandatory open to women live in certain areas no membership); interested in art and crafts, reading and photography. 

  • Hi, welcome to the community! It’s sad, when nobody really wants to understand the struggles. I wish you find here what you need. 

  • Hello Coffee_and_a_book, 

    Welcome to the community! :) and congratulations on getting your autism diagnosis Clap

    I am sorry to hear you are also feeling a bit lost and wishing others would be more understanding. 

    We have advice and guidance on feelings after a diagnosis and what formal support is available which may be useful to you: 

    https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/after-diagnosis

    I hope this helps.

    Gina Mod 

  • Congratulations on getting a diagnosis, and the validation that comes with it.  Everyone views it differently, but to some, it brings relief - even if the behaviours of those around don't seem to change. 

    I've written absolutely loads here about the unfair and unjust way in which society is essentially designed by Neurotypicals for their convenience, and anyone who doesn't fit that stereotype gets marginalised. Not only do you need to suffer systems that don't suit, you then need to battle decision makers who are quite happy in world's that suit them, and get you to explain and justify what needs to change. 

    There's been two or three other posts here recently commenting on poor support within Universities, and it does seem that some are far better than others when it comes to dealing with the needs of individuals on the margins. 

    It is a pet hate of mine - people who promise much & deliver little or nothing.  Those who will agree just to calm you down, or make you go away, and when you chase them up, they are nowhere to be found.  So many with ASD seem to place extra value on people being literal - and why on earth shouldn't they?  Why is it somehow acceptable to say one thing, and mean another?  

    I am wondering if it would be possible to arrange some support via Primary Care (which you can do yourself) or via your GP.  Primary care normally offer talking therapies of various descriptions (sorry if that's where you are getting your current counselling from - not clear) and some do offer the option of telephone or internet based sessions which might fit in better with your course schedule.