I'm a redhead.
It's kind of hard to miss actually. When you have this waterfall of
copper hair that flows halfway down your back, you kinda tend to
stand out like a fire engine in a crowd of black limousines.
My hair could be a signal beacon, honestly. I can't hide it. Oh, I
could dye it. Chop it short and go brunette... or blond. Or green or
purple for that matter. But it wouldn't change the fact that I'm a
redhead. I'd still have pale skin that never tans and turns as red as
a lobster in the summer. I'd still have magic invisible eyebrows and
eyelashes. And sooner or later, the dye would wear off and the red
roots would start peeking through again.
So, I'm a redhead for life. It's genetically a part of me, a part
that I love very much, and it's not going away anytime soon... or
ever. (Did you know that apparently redheads don't gray? We go blonde
and then white. Fun!)
But you came here to read about autism, didn't you?
There are lots of different shades of redheads. Some are
"copper-tops" or "gingers" like me. Some are
"carrot-tops." Some are auburn. Some almost brown, and some
are strawberry blonde. All different, unique, and beautiful.
But am I a "severe" redhead?
I see you squinting at me sideways. "A what now?" I hear
you say.
You know... a severe redhead. One of the really bad ones. Someone
who's severely afflicted with red hair. Someone who suffers from
having red hair.
No, I'm not crazy.
I'm a redhead. But I'm also autistic. And the questions that would be
weird and disturbing if they were about my hair, somehow become
normal when they're about my autism.
"You're autistic? But how bad though?"
"You must be super high functioning... I can't tell at all."
"Ohhhhh so you're suffering from autism?"
"Yeah, but you can talk... my friend's nephew's 3-year-old is
severely autistic and he suffers so much. You're nothing like him."
"Yeah, but you're not bad enough to actually need help."
Please just stop.
Please.
Please stop comparing me, an adult autistic woman, to an autistic
child and saying that because I don't act like a three-year-old, I'm
not autistic enough.
Please stop looking at the well-polished mask I wear in public and
saying I don't "look" autistic.
Please stop listening to the well-rehearsed social script that I
memorize before every single human interaction and saying I'm too
"articulate" to be autistic.
Please don't look at my struggles and assume that it's because of
autism that I'm "suffering".
Please stop assuming that because you "can't tell" that I'm
autistic, that I'm not.
And please stop assuming that "high functioning" is a
compliment. It's not.
What does "high-functioning" mean?
High functioning means that your struggles are ignored. High
functioning means that because you "look" like you don't
need help... you don't get help. "Help" being disability
services, accommodations, support... understanding.
High functioning means there's a huge amount of social pressure
placed on you, because, well... if you could pretend to be normal
long enough to socialize at a party, why can't you continue
pretending to be normal long enough to hold down a job? Surely it
isn't that difficult? You just need to try a bit harder. Put some
effort into it.
And so you continue to wear the mask, and you continue pretending to
be normal, and you continue forcing a smile when you don't feel like
it, and sitting on your hands to keep from "happy flapping",
and racking your brains for the socially acceptable response to
questions, and nodding even though you have no clue what's just been
said, and holding eye contact even though it feels like lasers are
being burned into your eyeballs, and not putting your hands over your
ears even though shrill laughter feels like your fragile glass brain
being shattered with a sledgehammer.
And then you come home and you rip the mask off. Or you try to.
Because the mask has become so much a part of you that you're not
even sure where the mask ends and you begin.
And you fall apart. And you melt down. And you explode for no reason.
And it's easier to curl into a ball under the blankets than it is to
answer the phone. And you're eating off of Tupperware lids because
you haven't been able to muster the energy to do the dishes in weeks.
And you're so overwhelmed that even the thought of phoning the cable
company to ask a question about your bill causes you to burst into
tears. And you stay up pacing the floor long into the night and sleep
into the afternoon. And you tear at your skin until it bleeds because
somehow, peeling away the scabs again and again and again is more
soothing than it is painful.
And you feel guilty. And you wonder why you can't just pull yourself
together and "be normal". And you wonder why God made you
this way... and you can't help feeling that somehow, this time, He's
made a mistake.
I have learned nothing if I haven't learned to be authentically real.
I spent three years wishing to die in my sleep. Asking God to please,
please take me home. I don't want to live like this anymore. I can't
do this. It's too much. It hurts. It's hard. Life is too hard for a
human with frail butterfly wings who doesn't fit on this planet of
flesh-and-blood humans.
Thank God, I am not like that now.
Because the moment I learned I was autistic, I changed.
The first thing I did, was rip off that silly mask, tear it into
shreds, stomp on it, smash it into the dust, annihilate it.
And I let go. I let go of my feelings of self-hatred and began to
love the beautiful strange person that I am. I let go of the social
expectations of productivity and progress to determine worth... and I
embraced the knowledge that the very fact that I exist, gives me value
as a person. I let go of my shame and fear of others finding out that
I'm not perfect... and began to love the imperfect person that I am,
with all her flaws and failings and shortcomings.
Oh, there are days that I still reach for the mask. There are days
when the mask is comforting and familiar, in the way that a prison
cell may become a safe haven for an inmate. There are days when the
real me blazes so brightly that I fear to look at anyone in case I
blind them.
But letting go of the mask is a daily thing.
I laugh all the time now. I bounce, rock, flap, clap my hands, hug
myself, pace the floor, bounce my leg, tap my feet, pull my hair. I
put my hands over ears when the sounds get to be too much. I stand up
and walk out of a room when I get overwhelmed. I look away when eye
contact becomes too painful. I am loud and determined in my
self-advocacy. I am learning to ask for the things I need. I am
learning that no one expects me to be perfect, and if they do...
well, they're not worthy of seeing the real me.
You know, being a redhead isn't always rosy. My hair is, as my mom
used to say, "Hard as a horse's tail." I'd love to be able
to go out in the sun without burning to a crisp. I'd love to have
eyebrows that you can actually see, without me painting them in. I'd
love to not look like Rudolph the Red-Nosed Reindeer after spending
five minutes in the cold.
But I love my red hair. It's me. There are a millions shades of red
hair, and all of them are gorgeous.
There are times when being autistic isn't easy either. Executive
dysfunction drives me crazy even on the best of days. Sensory
Processing Disorder sometimes makes even the most pleasant sensations
a nightmare. And I never will learn how to "do" small talk.
But I love my autism. It's me. There are a million different "types"
of autistic people... all of them unique and beautiful, with their
own personal struggles and triumphs.
So the next time you're tempted to refer to someone as a
"high-functioning" autistic... please remember the effort
it takes us to keep up that illusion. And please remember that you're
only viewing the tip of the iceberg and there is a lot more below the
surface that you may not see right away, if ever.
Get to know us as people... wonderful, vibrant, colorful, autistic
people.
Whether we're flappy or non-verbal or blonde or redheaded.
