those who…… bang their heads……against the wall

RIP Cynthia Busch.

They keep killing us, and I don’t know why.

I don’t know why but I think maybe it is because when we try to explain, when we try to speak up, they say – but you are not like us. Again and again, you are not like us.

But we are.

We are, and we always have been.

RIP Cynthia Busch.

 

 

Today, I got up.  I took a bath.  I got dressed.  And I pulled out the box of bandaids and the tube of generic Neosporin, because I know, very, very well, how to prevent infections when I have made myself bleed.

Sunday was hard.  I was looking forward to church, but was denied the experience because of an access issue with the sound system that I have run into time and time again.  I had a small, quiet meltdown, said hello to people at coffee hour, and replied ‘you are fine’ automatically whenever someone asked how I was.  (It is kind of funny how that standard American greeting is a real tell for me when I am stressed: my grammar and pronouns go away first.)  I walked home, took a nap, went out again to a social event where I enjoyed myself thoroughly but stayed perhaps a half-hour too long.

I got home about 8.  I turned off the light at 10:45.  And in between that time I self-injured.

As I do.

As many autistic people do.

As few autistic people like to talk about.

I have, to my knowledge, always self-injured – such an innocuous term for bruises and blood and cuts.  One of my earliest memories is of lying on my bed and banging my head against the wall, over and over, again and again, in frustration.  I do not remember what I was so frustrated about, I just remember the feelings of overwhelming sadness and pain that seemed to envelope my daily life.  I look at pictures of myself at seven, and though I may be smiling I know it was forced.

(“You’re lying,” my sibling told me.

“No, I’m not!” I protested.

“Yes, you are, because you aren’t looking me in the eye.”

I looked – I looked and looked but I didn’t see eyes.  Until I was a teen all I saw were dark slits and I was so, so confused at what exactly I was supposed to be looking at.  Looking at someone’s face was incredibly difficult.  I never understood when people talked about eye color because I didn’t see colors in eyes, they were just black.  I knew enough to say that my eyes were blue, but that was about it.  Today, looking at pictures of my smaller self, I see that my eyes were enormous and round and bright, but I was for whatever reason unable to comprehend, unable to see though my eyes worked fine.)

Jackknives, kitchen knives, needles, pins, nail scissors, sewing scissors, teeth, walls, hands.  I needed the physical pain to bear the psychological pain.  I would punch myself in the stomach, over and over, because then I wasn’t lying when I said my stomach hurt.  Then I had an excuse to not eat, an excuse to sit by the side of the playground and read my book.

When I pinched my arms, they felt real.  They felt like a part of my body in a way that they hadn’t before.  When I made myself bleed, when I tasted blood, I liked the taste, because it reminded me that I was alive.  I was alive, but I had a way out.

Some anti-neurodiversity people say that we so-called ‘high-functioning’ – how I detest that! – people are not really autistic.  They cite, time and time again, how their children bite themselves bloody, how they kick their caregivers, how they……how they bang their heads, against the wall.

The walls in the front room were cream.  There were paisley curtains.  The walls in the playroom were red.  When it became my bedroom, it was painted yellow.  The house was built in 1864; it was sturdy.  It was not going anywhere.  When I smashed myself against those walls, they forgave me, and if any marks were left, I do not remember anyone noticing.  My bruises were easily explained by the fact that I was a clumsy child – true – always tripping and falling.  And I learned to hide my injuries early.

Those parents who say that their children injure them – I hate to have to tell you this, but I really, I really do not care.  I do not care one bit.  Because the parents have the great ability to understand what is going on and to seek help for their hurts, the way their autistic progeny cannot.  When someone is hurting themselves or others, something is wrong.  Something is dreadfully wrong.  And the answer is not to wish the person out of existence or to analyze their daily life or to reward/punish the behavior away……..the answer is to relieve their pain.

It sounds so simple.

It is not.

I am lucky.

I grew up.

I was happy, or as close to happy as I had ever been.

And I still couldn’t stop myself from making myself bleed.

I am lucky.

After I gained twenty pounds on a half-dozen medications, my psychiatrist developed a theory about my self-injuries.  Ze theorized that I got a tiny endorphin rush, a tiny dopamine release, when I hurt myself.  That was why I could not stop, because my brain was crying so loudly for the reward that it could not hear my body’s very real cries of pain.  My rush for this high was overriding my fears of long-term and short-term consequences, even as I ended up in the doctor’s office ever more often with more serious infections and injuries.

Two years ago, I started, very, very off-label, a new medication.  It was developed for a different condition but had shown success in self-injuries in autistic individuals.  And I will not say it was a miracle, and I will not say it was a cure, but it worked.  Now, when I injure, I am able to stop.  I can turn off the light at night, as I couldn’t before because I had to stay up and make the blood flow. I am no longer covering myself with bandaids.  Now, I only need them once or twice a week.

Still the urge remains.  When I have a stressful day or week, I often succeed in hurting myself before I can stop.  The thing is – I can stop.  I couldn’t before.  My brain can stop itself.

This entire post is a really roundabout way of saying:

When some autism parents say that their kid isn’t like me, I say again,

You do not know me.

You do not know the scars I carry, you do not know how much I bleed.

You say that you are in pain, and I hear you, but

If I’m not supposed to have empathy because of my autism

Then where is yours for me?

Where is yours for your child?

The blood pools under the skin.

But instead of helping, again and again,

You take out the blade and cut.

 

 

(this does *not apply* to all parents-of-people-with-autism, but if you recognize yourself even a tiny bit, then I will have done a good work.)

(please do not ask what the name of the medication is; I will not tell you as I am not a doctor. but a good neurologist or psychiatrist should be able to work with you or your child and do enough research to find it.)

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