Friday, April 5, 2019

"Why can't you just go back to masking?" If you ask this question, you have no idea what it is like...

Have you ever been in a situation where someone tried to control what your emotional experience looks like?
For me, the answer is, yes, I have, but without being aware of it.  You see, I tried to control my own behavior because it was what I thought i had to do. I later learned that it is called masking and it is kind of like putting on a show all the time...well, that is, if the show is being performed in a foreign language, and the venue and scenery both change constantly without warning, and the audience is hostile and no matter what you do, it always seems to appear that the other actors and actresses cast in the show are waiting for you... perhaps it's your line? Perhaps you're supposed to exit stage left? Perhaps this moment of silence is simply written into the script? And you never know how your performance was rated or received, except for the fact that you keep on getting asked to play this part.  It's doing things you know you are supposed to do because you have seen them done multiple times in X situation so long as person Y says Z.  It is a long and exhausting script of which you have no understanding and it is further complicated by the fact that hardly any of the lines or plot action are natural responses for you or what you would have predicted based on what you see and how you interpret the world.  This act takes constant vigilance and control and effort and it is not only exhausting, but extremely damaging as well. It is damaging physically, mentally and emotionally.  It wears you down and drains your cognitive energy and resources; it makes you feel physically weak and exhausted; and it reinforces to you that you cannot be you - that your natural ways are not acceptable and that the world would rather suck the life out of you each day than experience your authentic self.  That part might be the most damaging of all. 

Opening act and beyond:

Growing up, I was undiagnosed - in part because I could do this masking thing very well when needed - in part because far less was known about Autism, especially for girls, but also in part because of luck.  My life and the environment in which i existed lined up with my needs really, really well.  My mother is a professor of exercise science and I was kept very active and she never viewed my need to move or do my own thing as a problem - and she encouraged it and facilitated it. I played high-level, competitive soccer from 4th grade on and I was constantly training.  At the peak of my soccer career, I would have multiple practices per day - weight lifting, running, team training, goalkeeper training…and games…for three different teams.  This was my life and this was all I knew.  Every day consisted of constant bursts of physical activity within a very rigid, highly predictable, schedule that was set months in advance. Even my social interactions were very predictable and safe in that they were always centered around soccer and for set amounts of time. Seriously..I truly miss being in environments when people get in trouble for idle chit-chat and side conversations unrelated to the task…. But any way, I digress… I was very protected and, unknowingly, well-regulated because of the way my life happened to be, and also I am sure, because these things felt so good and so right to me that I likely sought them out and I was not turned away from them. 

When I started my first full-time job, I tried to do all of the things I knew you were supposed to do being a “professional."  In doing so, the time I spent outside running around, moving and/or at peace in my own head was dramatically decreased and only a few weeks in, I was not in good shape at all and I did not know what was wrong.  It was like I could not cope with working. It wasn’t the work itself - I could do the work very easily and was relieved when I was left alone to do just that, but meetings, and sitting in offices and being around people with so much face time and all these new hierarchies and humans who wanted to chat about other humans and the weather and the shirt they purchased over the weekend…it all seemed like hell to me and made me absolutely miserable.  Not just disillusioned or irritated either - much worse -  I would come home and either sit in complete darkness and silence and go to sleep immediately at 5 pm for 18 hours straight, OR I would throw things and kick things and break things.  It would be like all this raging energy filling me up to the brim and any little thing could just cause an all out eruption. This happened a lot, and I used to sit and wonder why I could not do it.  How could everyone just sit there and be totally fine and I could not?  Was I depressed? Was I suicidal? I didn’t think that I was, but I knew something was really, really wrong. One day, I came home totally at capacity, and I was pacing around, so stressed, digging my nails into my head, feeling like I needed to destroy something and I could hear my neighbor’s TV through the wall and I ran upstairs to my room to try to get away and to block it out, and I could not escape the noise. It felt like being trapped with no where to go - no escape. The world became a blur; my vision looked like a windshield in the pouring rain with no wipers... and then, finally, a huge emotional release.  In that melt down, I experience almost a blind rage, so at first, I only knew I had exploded.  I did not know how.  But then it became clear -  I had kicked my bedroom door so hard that I broke through it.  And I collapsed in my bed and slept for many many hours. 

Much needed plot twist!

Luckily, after several more weeks keeping it in, I eventually ended up telling an OT (and very trusted individual) about this by sending a picture of what I had done to my door, and noting my struggles with work.  Now I know my sensory needs and that I need intense physical input constantly throughout the day.  Now I lift weights in the morning, run or lift again in the middle of the day, go for walks when needed, work from home as much as possible to limit face time and exposure to office environments, and use other tools and strategies throughout my day to make sure I am getting what I need. This is a shortened version, but learning that I am autistic and all about my sensory differences, and learning about masking by reading the experiences of other autistics made me realize that I had those physical outlets I described before over the course of my entire life up until that major transition, and that my social situations and total face-time, were all so much less, so controlled and so very predictable…and so I rarely got to such explosive points.  I was protected. It is not that I don’t still have challenges or that I never get to points where I am feeling on edge or ready to explode.  I still have melt downs and shut downs and lack awareness in these more complex environments…but now I have tools and strategies and I understand the importance of those things I did growing up.  Perhaps most importantly of all, it cannot be understated that they are needs, not privileges or rewards or bonuses if I have time.  it doesn’t work to say “after I get through this meeting, I’ll get to go to the gym!"  it is, "I need to bring myself down with some weight training if I want to be able to sit through and contribute to this meeting." This is critical for autistics of all ages! Their needs should not be held hostage from them until they can endure some other task someone else thinks is more important for some set amount of time.  Help us to regulate and then watch us shine!

Don't tell me to go back to masking... 

That is a rather long answer to say, that the social world and the way it is set up and the way it is so dismissive of differences, all tried to control my behavior.  Norms and scripts I learned and observations I made all controlled my behavior.  I controlled my behavior even though I could not explain they WHYs of those norms and scripts and expectations I had memorized.  People telling me “that’s just life” and “that’s just the way it is” or who made me think I was deficient or not capable if I could not do as everyone else…all controlled my behavior, or ensured that I felt I needed to control my own behavior. Over time, it doesn’t just feel “yucky” or tiring or boring.  It isn’t just unpleasant. It feels like living hell.  Like Total confusion and a feeling of being lost or incompetent. I truly thought the best part of my life was over and I had NOTHING to which I could look forward.  It is not just putting on a smile every so often or little white lies and some faking it here and there.  it is relentless and brutal. It wears you down, and the whole facade either breaks apart or breaks you apart.  it becomes impossible. It feels that way, i think, because, all that is natural and everything that is most genuinely and authentically you and how you interact with the world in every aspect of your life is ridiculed or dismissed as wrong or inappropriate so it just gets crushed down and forced into submission.  All of that physical energy that happens during stress AND during joy and all of life really, trying to pack that away and hold it in over and over and over so it just keeps building and piling up - eventually you just don’t have the strength and there’s no more space to pack it away anymore.  Because like I said, it is YOU and it has to come out. To control those emotional experiences and how they look is to control me and who I am. I think that people would be so disgusted with me and think I was so insensitive if I told someone they COULD NOT TALK about their emotional experiences and they had to just “control themselves” and keep it all in.  So then why is it not only okay, but encouraged and commonplace to tell me and others like me that we cannot express our emotional experiences the only ways we have ever known how or been able to do so?  The answer is…it’s not. its not okay.  it’s not right and it has to change.

Tuesday, April 2, 2019

Awareness? Acceptance? Appreciation? Oh my.

I was explaining to a very AUsome ally that none of the names for Autism Day really work. I hate the  idea that awareness would be good enough, but at the same time, there really is so much more understanding needed and there IS still a lack of awareness. Acceptance also seems like a low bar to set - it’s like tolerance of the fact that autistics exist and there ways. Things like appreciation and empowerment and activism are far better, but not realistic withouf a base of accurate understanding and acceptance. So I told her that it should be “Autism Level-Up Day,” where people strive for progress from where ever they are starting. She made thjs wonderful graphic for me to share. :) Happy Autism Level Up Day to all. 

An Open Letter to Carers of Autistics

Dear NT caregiver of Autistic child,
There is so much between us to be reconciled. 
I am autistic. My family are NTs
I’m 30 years old with a PhD
In behavioral science and I work full time
To express myself, I often use rhyme.
I’m artistic, athletic, a sensory seeker-
I played soccer through college and I’m also a keeper.
(That’s a Harry Potter joke if you didn’t quite catch it,
And too good of a pun for a keeper to pass it).
I live on my own for most of the year,
But for several months, too, my mother lives here.
I need constant movement, I need a routine.
I comprehend best that which I’ve seen,
And not what is heard, I don’t look in your eyes,
when I’m working so hard just to summarize
In my mind, that which you say
So I can plan out my thoughts and then I just may
Be able to respond and hold conversation, 
a demanding task, that I use in moderation.
And follow with down-time in pure isolation,
a very real need, regardless of social motivation.
I still get overloaded with social and sensory
I still go non-verbal in times of intensity.
I do feel empathy, it’s overwhelming and strong,
and it freezes me up: and my reactions seem wrong.
I smile when happy, I smile when sad,
I smile when terrified, I smile when mad.
I can be literal, and I love a good pun.
And playing with words and numbers are fun.
I feel the stars, and nature’s symmetry,

I seek comfort in patterns and geometry,
Small talk is baffling - it’s meaningless sound,
Silence is beautiful when it surrounds,
And I can be lost in the depths of my mind
in the peaceful retreat that i control and design.
I can drive, I can shop, so long as I plan,
I can get through my work day as long as I ran,
Or lifted weights and my schedule is known,
And for all tasks where possible I can be on my own.
I minimize face time, and I take lots of breaks
And i remain vigilant of the energy it takes
To complete each task and to get through each day,
And I counter those risk factors with movement and play.

Yes - I am different from your daughter or son,
But i’m certain there’s overlap; and more when I was young.
My mother could leave me for hours on end,
and I’d entertain myself unaware of times when
People came in; it couldn’t break my attention
Sometimes not attending to my name that was mentioned.
I could do well in games and tasks that had rules,
in predictable settings and I did well in school.
At least in most subjects but others weren’t passed,
Those I deemed useless, non-functional tasks. 
I couldn’t wear socks! The seams were pure hell,
i would scream and fight and kick and yell.
I couldn’t stand the sound of people chewing or breathing,
It wasn’t just annoying, I wasn’t just seething.
It made me explosive; I’d throw tables and chairs,
I’d lash out at my brother and I’d cover my ears,
And cry and melt down and sometimes get violent,

or run to my room seeking the silent,
And stay there for hours where the chaos was gone,
And the world was so safe when I was withdrawn.
Some nights I would stare out my window ’til dawn,
and it was magic and wonder - it never felt long.
But most nights I would sleep so deeply and sound
that when I woke in the morning my mom or I found
That I had wet the bed; this went on through senior year - 
my mother tried everything but now it's so clear
that it wasn’t about liquids or timing or hydration;
It wasn’t immaturity or lack of motivation - 
I never even sensed it; below my threshold for perception
A hyposensitivity in interoception. 

I’m not here to tell you you’re evil or cruel. 
I‘m not here to shame you or call you a fool. 
I‘m here to join forces and to work as a team
to learn from each other; to plot and to scheme:
How to improve this world for our youth,
And how to best advocate for science and truth
As it applies to autism support and accommodation
And resources and training and goals for education.
Too often it seems that efforts are wasted 
on misunderstandings from two different bases
With caregivers unconvinced that we're actually autistic
And autistics insistent that caregivers don’t listen.
And both sides unyielding and both sides decide
That the other won’t change for as long as we’ve tried.
No progress is made, no knowledge is gained,
nothing comes of it but a bitter exchange.
And change is hindered and progress stands still,
Like a microcosm of the issues on capital hill.
Divided and extreme; no attempt to compromise.
Nuggets of truth strategically weaved throughout lies,
And everyone more comfortable with what they think they know,
than seeking out feedback to learn and to grow.
I would never deny the critical insight
Of autistic adults in learning what is right
And listening to those who have lived through the process
cannot be written off as uninformed nonsense.
Or attention-seeking, or too well-spoken to get it,
Or misdiagnosed. And self-diagnosed? Then forget it.
NO - that is wrong and it’s ignorant too
And so often it happens and nothing gets through
So please NT parent, before you dismiss,
Hear us out and listen to this.
We can mask, we can fake it and hold it all in
We can learn to look “normal” and learn to “fit in.”
We can make you feel better by suppressing our needs
We can work for rewards and do as you please.
We can talk more and chit-chat, and we can flap less
We can not let it show when we experience stress.
You can control us, and we can comply,
You can feel happy, because we’ve learned to lie. 
I recognize fully that I can’t understand,
Your social drive; why it’s so bad to stand
Out from a crowd; be unique; an outlier,
I just don’t experience that same desire.
To be like everyone and go with the flow,
society would be stagnant, we never would grow.
Diversity is natural and a need for survival,
yet we work so hard to tame and unravel,
That which is different, and that not like you,
As if humans prefer comfort over that which is true.

So if you like normal, then normalize stimming,
normalize flapping and normalize spinning.

Normalize stacking and focus and seeking. Normalize communication other than speaking.
And logic and reason and literal minds
And intense special interests and details so fine. 
Be mad at “professionals” for being sorry to say
That your child has autism but it might be okay 
They might just be normal! There may be a way
Maybe just maybe you’ll have a real child someday. 
Be mad at the doctors and their bold audacity
To tell you all the ways that your child will be. 
MDs aren’t experts. It’s not their specialty
They’ve read one chapter in med school... ONE CHAPTER! maybe! 
Be mad at the system for being stuck in the past
Be mad at society for refusing to ask
Or ignoring the experience that autistics do share
You’ve been misled... and that just isn’t fair. 
And it’s also not fair for us to ignore you. 
I want to know more! Really! We all do!
I want discussion and sharing of ideas
And more productivity and a lot fewer tears. 
I hate this division; i want to do better
I want us to thrive by working together. 
I hope you’ll write back and tell me your tale,
Because we’d be a force i believe could prevail. 
So happy world autism day! Let’s celebrate,
then let’s join forces as it’s never too late. 
Sincerely yours, With all my best,
Autistic Adult with NT parents. 

 - Jacquelyn

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