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New to the community

Jseymour

Hi all

I was talking with a friend of a friend who is a doctor and they uses to have a functional medicine practice and specialised in ME. She said that most of the ME women she saw were actually autistic and exhausted from masking. And I said 'but not me.. I just have ME' right? And she said 'no darling, exactly like you'. 

That was last year, I was 35 and my whole life flipped upside down. After a few weeks I realised that yes that was actually what I was, not just weird, with hard sensory issues which often made me wondered if I had OCD. I wear my pyjama top in side out because I don't like feeling the seams when I'm trying to sleep, I have to make sure the bottom sheet is completely tight without wrinkles before I can get into it. I hate social occasions unless it's one on one with my few closest friends. I can't find new pyjamas even though mine have holes because I can't find any that feel right on my body. To name a few. It's a wonder it took so long to find out I was autistic.

I now know that I have been masking through a lot of my life, and really want to work out how to not, to try and prevent the exhaustion. I have often stopped myself getting to 'into' something because I'm worried I'll become so obsessed and not be able to stop. I have absolutely no idea what an unmasked version of myself looks like or even where to begin. Not to sound too dramatic but who actually am I? What do I enjoy? I want to live authentically but honestly don't know where to start. How do you stop masking when it's the only thing iv ever done and don't even know when I'm doing it? 

Any tips would be gratefully received. 

  • Hi and welcome, I’m also a lateling, it does start us questioning who we really are. What came from my assessment was that I had built my suitable world around me, I work alone and very much enjoy the solitude, I have a wife and don’t need to mask around her. Interaction with others is still very scripted, if possible I research someone before meeting them.

    To be honest, as I get older I care less what others think of me, the realisation of autism stopped me thinking that I’m damaged or broken. I finally had an answer, I’ve spent many hours trying to workout what part of me is real, my personal view is that because we have always been autistic, we will always keep our guard up and be suspicious, it’s our defence and default setting. Most of us have struggled and still struggle with interaction and have been hurt in the past. It seems to start on the first day of school and then carry on into work.

  • Welcome to the community   I hope you find lots of insight and comradeship here. Among us there is lots of individual lived experience to help you feel connected.

    To reassure you, what you described is not 'too dramatic' at all. It is a logical and fair response to many years of masking and the unsettling of identity that comes when you self-identify or get diagnosed. It's big and, for many of us, it comes with lots of emotions and takes a while to resolve. Self-compassion, patience and gentle exploration will help you.

    Masking is a survival response and it is likely that you will feel safer to unmask more in some contexts than others - it's not as simple as an on/off switch. But yes, masking less and leading a more authentic life burn less energy.

    I am 59 and was diagnosed as AuDHD last year. I was told I was very good at masking, which explains how I 'passed' for so long and why I kept burning out from the exhaustion of doing that.

    I have been asking similar questions to yours. The answers for me have sometimes been surprising, sometimes reassuring and always worth the effort of thinking about.

    Good luck with your self-exploration, and us folks here will be here for you.

  • Hi and welcome to the community. I understand how you feel - even after 9 years of learning about autism I still am not always aware of when I'm masking, but I do understand myself a lot more.

    Masking comes from copying others, and to copy them we have to observe their behaviour. See if you can try to observe your own behaviour when you're with others, then analyse it. Did it feel natural? Can you identify things you said or did, that you realise you have copied to help you manage a situation? 

    Jseymour said:
    who actually am I? What do I enjoy?

    Often people who are trying to get to know someone else will ask questions like: What do you do for a living? Did you do a degree? Where do you live? Are you married / have a partner? Do you have children? Where do you like to go on your holidays? What are you doing at the weekend?

    Those usual "small talk" questions inform them of the other person's relationship and family status, education, and financial and social status (judged by their job, what area they live in, what type of holidays they take, which restaurants or places they visit at weekends)

    But to me, that doesn't tell me much about who the person really is. On this forum, if people ask questions to new members the most common is "What do you enjoy?" The things we as autists usually enjoy are not working, taking holidays, going to restaurants, socialising with lots of people - but often we avoid telling others of things we like because of fear of ridicule - such as my enjoyment of video games (as a woman in my sixties it's rather unexpected!)

    So, think about what you really like, and whether there is something you'd like to experience but haven't due to expected judgement by others. Then accept those things as part of your identity and talk to us here about them, where you won't be judged.

  • Good morning from America, Jseymour!

    Welcome to the tribe! The best advice I can give is to check out stories on this site. I’ve learned a lot about myself just by reading about other people’s experiences.