Wednesday, June 29, 2016

Dear Young Autistic Person: Why We're Angry

Sparrow Rose Jones
unstrangemind.wordpress.com

a young person with hands on the sides of their head and screaming in anger
[Image: Young white boy with an open-mouthed,
yelling expression, and hands over his ears.]
Dear Young Autistic,

I am like you. I am Autistic. Now I am a middle-aged Autistic (I’m probably older than your parents) but I was once a young Autistic like you are now.

One of my biggest struggles was (and is) with anger. People have commented many times over the years about my anger. You might be angry, too? People around you might talk about your anger to you or to each other where you can hear them. Or maybe people don’t talk much about your anger because you’ve got ways to push it down and hide it from everyone. If you think you aren’t angry at all, check to make sure you didn’t hide it so well you can’t see it yourself.

Why was I an angry young Autistic? I felt stuck in a world I never chose and couldn’t understand. There were many things in life that were easy for me to excel at -- often things others found difficult, like playing the piano, solving logic puzzles, quickly memorizing long poems and plays, learning foreign languages. But everything in life that required me to work and play with other people was out of my reach.

I was angry because people would see how hard it was for me to try to fit into the world of people and they would laugh at me, call me names, tease me, exclude me, even hit and hurt me sometimes. I learned early that everyone talks to kids about how important being good at academics is and almost no one talks to kids about how important understanding humans is. But it turns out that understanding people is more important for success in the world of people than understanding academic subjects is.

I was angry because the world was so frustrating and exhausting. I was stressed out, worn out, burnt out, cast out.

My anger got me in a lot of trouble. My math teacher called me "argumentative." My English teacher called me "overly reactive." My parents said I was bringing trouble on myself by showing my anger, because as soon as the other kids saw that they could make me mad, they had won. “Won what?” I wondered. Was it really a game to the other kids? Some kind of contest? What sort of cruel game is it to single out a classmate who is struggling and suffering and burden them with taunts and blows? Who “won” when I retaliated in anger and ended up being the only one punished for an experience that was designed from the beginning to punish me in every way possible?

I want you to know that I understand. The world is completely unfair and there is so much that is genuinely worth getting angry about. I know you have been worn down by your anger and by the world’s reactions to it, but I want you to know that you should never feel ashamed of your anger or lesser for having a hard time controlling it. It is logical to be angry when you are stuck in a confusing, often violent world, tormented every day, forced to waste so much of your energy trying to hide your very understandable anger, punished for things you can’t help.

I also want you to hold on to hope. I am decades older than you and I am still angry. I am very, very angry. Sometimes the only word for it is furious. But: I also get better and better all the time at channeling that anger into producing things -- writing, art, dance, music -- that I value, and that others (usually) do not want to harm me or shame me for producing.

We are Autistic and that means that we have our own ways of growing and changing over time. You will learn to cope. You will learn to manage your intense feelings more and more every day. It will never be perfect; we will never be Mr. Spock. But it gets better; it gets easier.

When I was young, I bit people. The last time I remember biting someone, I was 14. I would still bite someone now if they were attacking me and I needed to save my life or someone else’s, but I haven’t bitten anyone in anger in 35 years. That’s a victory. I used to hit people with hard things and I stopped that, too. I no longer hit, bite, scratch, or kick out of anger, though I would do all these things and more if I were being physically attacked. That is what I have been able to control: responding with physical violence to those who tease and torment me.

Yes, I still get teased and tormented as an adult. But now I am (usually) able to walk away from that person and have nothing to do with them. I know school can be hard. Hang in there! It seems like it will be forever, but soon there will come a day when you get to make more of your own choices. Soon you will get more choice about who you spend time around. Soon you will be allowed to avoid so many of the people, places, things, and words that make you so angry right now.

In the meantime, don’t let bullies and anger distract you from academics. Learn everything you can. Specialize in knowing about the things you love. Your knowledge and the use you put it to will be what lifts you out of the places you feel stuck in now. Learn breathing techniques. Consider studying meditation. Find a strength inside yourself, even if you think it isn’t there. It is. And while emotions rage through you like seaside storms right now, trust that you can and will find calmer seas as you age.

With autism, we get a great gift. Those kids around you will grow and change but somewhere in their mid-twenties they will hit a point where changes are slow and small. They may seem ahead of the game right now because they had all kinds of emotional growth spurts early in life while you were still working on getting your bearings. But we Autistics grow and develop throughout our lifespan. No, you won’t see much in the scientific literature about that, but I know lots of Autistics my age and older and I feel very confident in telling you that you will continue to change and grow in your thirties, forties, fifties, sixties, and beyond -- as long as you live. Take a moment to think about how marvelous that is, what a treat, what a privilege.

You will find it easier and easier to remain calm, saving your anger for those times when you need its emotional jetfuel and not wasting it on automatically reacting to jerks. Those jerks will be running the same tired emotional-social-developmental treadmill for the rest of their lives while you will be ever reaching toward new adventures. Don’t be ashamed when they make you angry. If not now, one day soon you will come to pity them.

----

This article was previously published at unstrangemind.wordpress.com.

Thursday, June 23, 2016

How Lack of Accommodations Can Thwart Anxiety and Mental Health Services

Sparrow Rose Jones
unstrangemind.wordpress.com

[image: The comics character Charlie Brown, sitting up in bed
with his head in his hands, under a speech bubble reading,
"My anxieties have anxieties."]
I wasn’t sure if I would write about this or not. I have shared many deeply personal and private things with my readers, but this is hard and humiliating and I’m not even sure why this is harder to share, but it is. So please be gentle.

I have anxiety so bad and have had it for so long that I didn’t even realize how anxious my baseline state is until the first time I smoked marijuana and experienced what it’s like to feel peaceful. My anxiety makes every day a struggle. Even my good days are riddled with anxiety. As I said, it is my baseline state.

I should add that therapy makes me more anxious. Every so often I struggle so much that I think about trying therapy again, despite knowing how hard it is on me. I get hopeful and decide to gamble on the off chance that this will be the time that I finally find a therapist who gets me and has the tools and training to make a difference in my life.

This morning was one of those times.

I saw a notice for a table at a local library branch. For two hours, a local “behavioral health” (that phrase is so creepy) organization would have a table available for people, “to learn more or to get information about ALL services [agency] offers.”

That sounded promising, so I went.

The entrance to the library was a sensory nightmare. I had to get past a food box hand-out at the door. I am glad someone was feeding people, but it made for a confusing sensory nightmare plus a big audience of strangers watching me trying to get information about a sensitive topic.

Inside, I struggled to make visual sense of the room. There was a table with a person at it, but no sign identifying who they were or why they were there. It used up just about my last drop of processing to get to the table.

So there I was, fidgeting, rocking, avoiding eye contact, having a really hard time of it and pretty sure it showed. “Is this the [agency] table?”

“Yes.” And they waited for me to say more.

“It said you would have information about your services?”

“What service do you need?”

Now … some of you are Autistic and some of you are parents to Autistics (and some of you are both). So you know what I’m about to say.

I couldn’t make the words. And even if I could, I was not comfortable telling my troubles to a stranger in a very public setting.

I see now, at least somewhat, what they meant and what I was supposed to say, but in the moment, it was too much.

I said, “What do you have?”

They rattled off a string of words faster than I could process them all -- who knows? There might have been a better fit in there for me, but I managed to latch on to “mental health services.”

“Those. Mental health.”

They picked up a pamphlet, “you can call this number, and…”

I don’t do phone,” I blurted. This should really be an expected response from someone with anxiety issues, right?

“Is there just a pamphlet I could read or something?” By now, I was hitting the end of my “spoons.”

They tried to hand me the same pamphlet. I looked at it. It was for alcoholics and addicts.

“I’m not an alcoholic,” I said, feeling lost and helpless and pretty certain the wizard had nothing in his black bag for me.

“Yes, but this phone number...”

I was sunk. It was back to the phone call. If I could have made a phone call, I would have done it already, not come to a table hoping to get information and answers about how [agency] might help me.

“Thank you,” and I took off out the door, double time, to go sit in my van where I shook and cried, getting myself together enough to drive away.

What was the point of putting someone on that table who didn’t know how to talk to anxious people and didn’t know how to educate a mental health care consumer about their options without being stressful and triggering?

How many anxious people are not getting helped because access to services is blocked by the lack of accommodation for the very issue that brings them seeking services in the first place?

I’m back to business as usual: coping with anxiety by hiding, leaving places, shaking and trembling, stimming, chewing on things, running away, having panic attacks, and smoking marijuana whenever I can afford it and get away with it. (Please bring medical marijuana to all fifty states! Better yet, bring medical marijuana and recreational marijuana so those who don’t have the money or coping skills to go through the medical system can still have safe, legal access to a medicine they know helps them.)

There is something really wrong when helping agencies become access barriers to the people who most need their services.

I tell myself it’s just as well: any agency that can’t even advise me without sending me into a panic is not going to be able to help me anyway. And therapy that is not helpful to me is often actively harmful to me.

But getting help with my anxiety was still a nice dream while it lasted.

My point here? If you are in a position to help or serve a vulnerable population, do your homework. Destroy the barriers your potential clients face in seeking your help. Be sensitive to the needs of your target population, and don’t leave them high and dry because they are too anxious to make the right words, and too put off by your continuing to offer things they’ve already made clear that they can’t access.

That’s all. Vulnerable populations trip over our own feet enough as it is. We don’t need to trip over yours, too.

----

A version of this essay was previously published at Unstrange Mind.