Get Back Up And Do It Again

ActuallyAutistic, asd, autism, Taking off the mask

I had a moving experience recently at a concert by an artist whose music is one of my “special interests.”

I was on such a cloud of bliss during their show that kinda hit me between the eyes spiritually and politically.

It dawned on me that I am afraid of all the things that matter, that create empathy to spark change, that fulfill the soul of me rather than the perception of me.

People would say I have done “fearful” things in my life

like moving to a new country to go to university,

performing live shows in a band,

doing a poetry reading in a fully booked coffee house,

or taking part in a panel discussion for international students for UCAS conference in front of 400+ global higher education leaders that was also live-streamed for millions across the world.

I have done fearful things. But that isn’t what I’m afraid of.

I’m afraid of being misunderstood,

hurting peoples’ feelings due to my bluntness,

misreading social cues,

going off script,

using the telephone

or my good intentions being mistaken for malice.

I’m afraid of making friends,

sharing my “special interests,”

or staying quiet instead of educating people on important causes that I care about like the environment.

It isn’t about ego. I don’t have an ego to bruise, to be honest, and I can thank my superpower for that.

The reason I was able to do all of those “fearful” things was because I believed in its higher purpose to help, heal and support other people who may have related to my music, my words or studying abroad to start their lives over or to just start their life like I did.

We all wear masks regardless if we’re marked as neurotypical or neurodiverse. Taking the mask off is scary for everybody and for lots of different, complicated reasons.

I am afraid of fully taking off my mask

and I’m deeply, painfully lonely partly for it.

I isolate myself because of my fear of expressing common qualities that attract people to one another. It’s not like I’ve been a total failure in this, because I haven’t been, but I am still shackled, and I don’t want to be shackled anymore.

So.

I’m going to try again.

I need to be more “me” and less the “me” that I feel people want to see because I’m afraid of my autistic weaknesses.

The reality is I may be weak at some things, but I am damn good at other things like pushing my fear out of the way because I don’t have ego.

Baby steps.

I may fail but at least I will have tried.

Oh, What It Would Be To Have A Heart Made Of Armor

Taking off the mask

I feel like a ghost most days.

This feeling intensifies when I am in a very social situation with people in loud, chaotic, multiple-conversations-happening-at-once setting. I have a very difficult time functioning in this type of setting, no matter if the mood is happy or not, so I don’t really engage and end up usually shutting down.

This, naturally, confuses most people and I usually end up getting asked if I’m okay or will be mistaken for being aloof, shy, upset, detached, moody, etc.

Then I become a ghost.

This happened recently. I was struggling to be “on” after having a really exhausting day in terms of too much “people-ing” and sensory overload in a busy city with huge crowds, etc. I couldn’t engage enough. I probably should have spoken up about the problems I was having but didn’t. The company knew about my diagnosis so maybe they should’ve spoken up, too.

Regardless, this kind of stuff triggers the fight-or-flight response, making me want to disappear from everyone and everything.

I found a really good article from the National Autistic Society regarding autism and loneliness. It is spot on and perfectly depicts my own feeling on this subject.

I’m learning that these down-to-the-bone-marrow feelings of isolation are probably linked, in a way I suppose, to the shutdowns.

While I feel my particular autism has many strengths, communication is one of the areas where I do find it to be a disability.

Casual conversation.

Making and keeping friendships.

Social interaction.

I am going to be 35 on Monday and I suffer just as much as I did when I was a child when it comes to integrating into a social “norm” setting and maintaining friendships.

I am very good at “camouflaging” this, when I have the energy to, so anyone who has met me in the last few years won’t really notice or will be mega surprised to find out about my autism.

But those who knew me before then–before I mastered my masking techniques–won’t be surprised at all.

And masking is utterly exhausting.

I have written before how I don’t want to wear these masks all of the time. I want to be who I am and have people understand that I am different and that I need some guidance on how to effectively “fit in.”

I have not been wearing these masks lately but few people around me are changing and, in some cases, the “friendships” are getting worse because some people refuse to talk to me about my autism diagnosis and refuse to adopt a social situation that will help me communicate without shutting down (i.e., something a little more quiet or with less people).

Not masking is making me feel more isolated than when I am masking. But when I mask, I feel like I am inauthentic and why hide who I actually am? I don’t think it’s inappropriate for me to address when I am having troubles due to ASD and kindly request if we can move somewhere more quiet, for example. Usually, people are okay to do this, but some aren’t. And the ones that aren’t, I guess, aren’t really worth my time in the first place.

Is it unhealthy for me to think that, because I am trying to compromise by improving scripting (or “chitchat”) skills by asking, what to me, are useless questions with no meaning to help “neurotypical” people feel comfortable, people should compromise on helping me in social situations by being a little more sensitive to my disability with communication?

Am I asking too much? I genuinely don’t know if I am or not. It would be helpful for someone to tell me so I can appropriately address the situation(s) in the future.

It’s unfortunate that a lot of my sensitivities are very socially focused (overly-sensitive sensory sensitivity and sensory avoidance) but that doesn’t mean I don’t like people or lack a need for human interaction.

I do need it.

And I’ve tried.

Am trying.

And will keep trying.

Even though it hurts sometimes.

But, I guess, those who are actually interested in my good qualities and the friendship I can offer will talk about this with me. People who show complete apathy, avoidance or other negative responses aren’t really worth the energy I have to expend to keep trying.

Or may they do care but aren’t sure how to talk about it with me.

To  communicate in a world where most people, “neurotypical” or not, are already pretty poor at communicating is hard. I mean, we are all just children with hurt feelings inside adult bodies, right? We should probably be more mindful about addressing those hurt feelings, talk it out and move on.

A quote by Nita taken from that article by NAS I linked to earlier, who is also autistic, goes like this:

“I am autistic, but I am no less worthy of friendship than anyone else.”

Those. Words. Exactly.