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Does it ever get less weird?

sommersunshine

Hi everyone, 

I am new here, new to diagnosis, but not new to autism (it is my special interest). My family and inner circle are finally coming to the point where they see me as an autistic person, and actually believe me. For the first time in my life I am receiving support, accommodation, acceptance. It is wonderful. I can't believe how less stressed I am just with the support I am receiving thus far. But it also feels incredibly strange. 

I have heard countless stories of people struggling to get acceptance for their autism, and struggling even more for accommodations. It feels foundational to the autistic experience, almost going so far as to be a sort of solidarity among autistic people of 'no one will understand you but I will'. I have felt that and the challenges struggles that come with it. But I'm learning that that likely won't be a part of my story forever. I will more than likely end up in the incredibly privileged, teeny tiny section of the adult autism community that receives support and is ultimately doing ok. I'm not sure what to do with that. As incredibly grateful as I am, I also feel...survivors guilt? Not autistic anymore? I have so completely synonymized being autistic with suffering that now that I'm not suffering I'm not sure what to do with this part of my autism story. 

Then there's also the constant feeling of being perceived. I'm used to constantly being blamed for my autistic traits, but I'm not anymore. Instead I am met with compassion and understanding, and, for as much as I am relieved by it, it feels slightly patronizing. To be very clear, I am not complaining, because I know how unbelievably lucky I am to have any level of understanding at all. But this new level of empathy feels foreign and a little uncomfortable. I feel childish in my autistic ways of being. Like all of the expectations are off of me and I'm a 12 year old who can't be held accountable all over again. It's wonderful: I've been able to stim, unmask, take a breath. But also just strange. 

Has anyone else experience this? Do you ever get used to a new way of being? Does it ever get less weird? 

Parents

  • I have never experienced this, but it would like to. I feel uplifted reading this post.

    sommersunshine said:
    Then there's also the constant feeling of being perceived

    This resonates.

    sommersunshine said:
    I feel childish in my autistic ways of being

    This too. 

    Would you mind me asking what helped you get to this stage please?

  • in reply to Lonehare12

    Of course! Although my autistic brain is seeing nuance in this question so I feel like I need to answer it two-fold. First I'll answer how I specifically got to this point, then advice for other's. Hopefully that answers what you're looking for. :))

    First, how I got to this point. I am unusually lucky in that I was 1) born into a very autistic family 2) born to a mother who is an occupational therapist and 3) picked up from a very young age, and repeatedly since then. I was very lucky that when I was younger I was seen by a speech therapist for pragmatic communication difficulty, an occupational therapist for sensory issues, etc. It was all there, but not yet understood as autistic. I am of the age that when all of this was going on you couldn't be both autistic and ADHD, and since I am SOOO ADHD, I think that was prioritised. But since I was so flamingly autistic as a child, it was pretty easy to follow the paper trail all the way back and see it was always there.

    In terms of what has changed more recently, I think it took my family seeing behind my mask to actually believe me. They needed to see trying desperately to mask + still autistic (in their eyes) to see the autism at all. Everything changed once they saw this. 

    I think my advice to other's would be to never stop advocating for yourself, and also to not wait for other's to start self-accomidating. It took me about 5 years of self-advocacy for them to finally see it. I think for some people seeing is believing, but they also need to know what to see to see anything at all. In my experience this came from 1) self accomidating, which both made me "look autistic" (yes this is problematic but I do think it is meaningful for the neuro-majority) and showed that I "respond autistically" to autistic-centered supports and 2) from them seeing my mask fail and realizing I am still the same little kid underneath. 

    I love talking about autism & advocacy, so by all means feel free to start a conversation or ask any more questions. I'd love to help! :))

Reply
  • in reply to Lonehare12

    Of course! Although my autistic brain is seeing nuance in this question so I feel like I need to answer it two-fold. First I'll answer how I specifically got to this point, then advice for other's. Hopefully that answers what you're looking for. :))

    First, how I got to this point. I am unusually lucky in that I was 1) born into a very autistic family 2) born to a mother who is an occupational therapist and 3) picked up from a very young age, and repeatedly since then. I was very lucky that when I was younger I was seen by a speech therapist for pragmatic communication difficulty, an occupational therapist for sensory issues, etc. It was all there, but not yet understood as autistic. I am of the age that when all of this was going on you couldn't be both autistic and ADHD, and since I am SOOO ADHD, I think that was prioritised. But since I was so flamingly autistic as a child, it was pretty easy to follow the paper trail all the way back and see it was always there.

    In terms of what has changed more recently, I think it took my family seeing behind my mask to actually believe me. They needed to see trying desperately to mask + still autistic (in their eyes) to see the autism at all. Everything changed once they saw this. 

    I think my advice to other's would be to never stop advocating for yourself, and also to not wait for other's to start self-accomidating. It took me about 5 years of self-advocacy for them to finally see it. I think for some people seeing is believing, but they also need to know what to see to see anything at all. In my experience this came from 1) self accomidating, which both made me "look autistic" (yes this is problematic but I do think it is meaningful for the neuro-majority) and showed that I "respond autistically" to autistic-centered supports and 2) from them seeing my mask fail and realizing I am still the same little kid underneath. 

    I love talking about autism & advocacy, so by all means feel free to start a conversation or ask any more questions. I'd love to help! :))

Children
  • in reply to sommersunshine

    Thank you, this really helped me understand it.

    What you said about people only “seeing it” once the mask slips really makes sense.

    I think that’s happening with me too,  people will only believe it when I stop coping so well.

    I also like what you said about self-accommodating and not waiting for others to get it first. 

    Thank you!!

    (⁠•⁠‿⁠•⁠)