Just diagnosed and confused about self - who am "I"

Hi,

my diagnosing doctor told me (according to the tests) that I (42) was one of the slowest people. Actually out of a 100 people - 99 were faster.

I knew I was slow, but that exasperated my low self image about that part of myself. I try to view it as that I am a very relaxed person. but I am not.
I am anxious most of the time.
But I have extreme issues with emotional dysregulation and sensory processing. Just someone talking might be enough at the end of the day to
get me over the edge.


But here is what I was getting at:
When I first self-diagnosed I got into this big self-image confusion.
I learned about masking and copying other people.
So if I have done this - and I know I have - who is this person under the mask?

I have tried to be more myself at home and right away got a comment that I perceived as non-accepting of my me.
This ended in a meltdown.

I also feel like I have to mask at home  so my family can live with me. Having lived this way, it is hard to undo, or not do.
I often want to have my own place, so I can be myself, but that is close to impossible. I don't have the energy either.

My doctor also asked me if I have gender issues, and I do. But I didn't think that it was strong or important.
But now anything is possible. He thought maybe that that was my underlying problem.

Has anyone experienced anything like this?
I appreciate any comment. Thanks.

  • That sounds painful. My experience is right now is different in that I am relieved to understand the drama in my life comes from my autism. I haven't gotten to a point where I grieve.
    I suppose I try not to think of how my kids and I could have been different too often. I have said a few times that I would have done things differently with them had I known. But fact is, I didn't know, and I tend to believe I do the best I can each day with what I know and the resources I have. I find that thought unburdens me of  some of the guilt I feel. Then again I go through the events and feel bad for them.

  • Thank you.
     I just won't talk to my mom or sister about it and instead talk to my husband. And! come here. :-)

  • Thank you. With the diagnose in place I can better take care of myself and stand up for my needs.
    Speaking of social support factors. I realize I need to learn to say, that I can't talk or listen anymore. That seems to be a slippery slope. Some people will take it personally.

  • For me it feel like a gradual process of unpacking past trauma wrapped in broken glass.  

    My autism journey started (like so many adults) with my child's diagnosis and each layer of issues seem like dealing with a new thing that is on fire. 

    With time I have tried to deal with the issue that is causing me the most pain and sadness at the time and it is just one foot in front of the other until i see how far i have come not how far I have to go.

  • Ah, I’m glad you can feel safe with your husband and kids, but I’m sorry about your mother and sister. It sounds like their responses have been really unkind. It is perhaps the case that they feel they know you so well that they couldn’t possibly have missed it for so long and therefore you (and the medical and psychological professionals who have studied for years and years) must be wrong.

    Hoping you get some peace and are able unwind from the burnout phase. I think burnouts can last different amounts of time for different people and can be dependent on social support factors as well.

  • Thank you so much for all your thoughts.

    I will be thinking about this some more. But right away I agree that it would be unfortunate to not let yourself drop the masks with your immediate family. My husband and kids are "safe" to do that with, but my mother and sister cannot take it. Especially my sister, I have the feeling she doubts my diagnosis. My mom just doesn't get it, I'm afraid to say.

    I suppose I am in an autistic burnout phase for some time. - I understand that it may last a few years. (?)
    And when I am down, I retreat, so I don't bum out my family. My husband knows, but it makes it easier for him.
    That is one thing, but "un-masking" is, as you said, a long process. I've come to know it now.
    I started by cutting my hair short when I realized I don't have to be like Laura Ingalls anymore.
    Joy
    And it feels damn good.
    Laughing
    Thank you again. some really good ideas!
    It's been really helpful to me.

  • Hi.

    Sorry to hear that you're struggling in this way. I totally understand what you're saying about finding the 'me' under the mask(s). I think that's a really hard one. I think the only way to get any further is open and honest conversation, but that can be really difficult and sometimes others don't respond the way we need them to.

    When you say family, is that like parents and siblings, or spouse and children, or other? One thing I hadn't really thought about and my husband said to me the other day when we were just randomly talking about masking and not masking was that he felt that he would be very sad to find out that I'd been hiding myself the whole time he's known me. So that might be something that's behind your family's response as well - it might make them sad to think that you've felt the need to hide part of yourself from them for potentially a really long time. And one thing I've been learning is that some people respond to being sad about something in really peculiar and nonsensical ways. Hopefully with time and continued talking about it, they could come to understand your side as well.

    Also, and this is just my personal opinion so feel free to disregard it, but I would be careful about thinking 'there is this one underlying problem and if that was sorted, everything else would be fine and I'd start to actually like myself.' From friends who have gone through similar experiences, there is no easy fix. Finding your identity and becoming comfortable with it is a long journey of thinking lots and talking about it. I struggle with talking to others about personal things, like A LOT, so one thing I've found really useful in this is writing a journal. Also there are some really good books about self and identity. I remember I had one about 'Finding your Voice Through Creativity' or something. Because I also like drawing and colouring, I found that really helpful too.

    You could even just start by making some lists. I know I LOVE making lists! Smiley  Make a list of 10 positive phrases starting with the words "I am...". Then make another list of 10 things you love, or 10 (or 5) goals you want to achieve (with a time-frame).

    I hope you find some things that can help in your journey of self-understanding. Remember, an autism diagnosis (or any other diagnosis) doesn't change who you are. It just describes some of the things about us. Find something you enjoy and focus on that for a bit - see what develops out of it. I find that's a really good way to find the things I care about and the things I am passionate about.

    All the best!