Why I’m “damaged”

I feel like I don’t even need to give context for this entry, so widely known is screenwriter Terry Rossio’s Twitter post. For the unaware he started by referring to “vaccine damaged” children and ended by comparing being called anti-vax to being called the N-word.* Yeah, it was a mistake. You knew I had to write on it.

So allow me to speak, in absentia as he will never read this, to Mr. Rossio. You referred to vaccine damaged children. You meant autistic children. I know you did. No other condition is linked to vaccines and though you don’t want to hear this, neither is autism. You referred to autistic people, a large population, as damaged in public. We can read it.

The thing is, you’re right, guy who cowrote Little Monsters. We are damaged. I know I sure am! Just not by vaccines.

I’m damaged because we live in a society that allows people like you to insult people like me without a second thought. You didn’t think for a second that autistic people would read your words. In your mind, we’re non-functioning drones. And how often has your view been refuted after all? Not often in your business. That hurts.

I’m damaged because society constantly allows others to speak for us. I’m not talking about my now deleted and staggeringly wrong post on Steve Silbermann who has proven himself in the last few years to be the greatest NT ally we’ve ever had. I’m talking about the doctors and “advocacy groups” who assume we don’t know what we’re talking about. Imagine the blow to your self esteem to be told you’re not qualified to discuss your own life.

I’m damaged because the traits that define my condition are universally treated as negatives. I know more likely than not I’ve bombed job interviews for positions I might’ve gotten based on my work because of my struggle with eye contact. My obsessive interests are derided and mocked. My utter need for routine to function is called out. Yeah, that’s damaging.

I’m damaged for going through a school system that didn’t respect my needs. It was extremely difficult to navigate a world set up at almost precise opposition to my mental state. It wasn’t until high school I got any help but by that point the psychological toll had been extracted.

I’m damaged because no matter hat I achieve in life, the second I give my status as an autistic man, I know or many people their estimation of what I’m capable of drops. It doesn’t matter that I graduated high school and college with honors. It doesn’t matter that I’ve been at one high skill job for 10 years. It doesn’t matter that I’ve been married for five years. It doesn’t matter that I’ve been a father for 2.5 years. All that I’ve done can be wiped out with a word. That leaves scars.

I’m damaged because I even have to say any of this. It should be obvious vaccines don’t cause autism and even if they did in a tiny percentage, not dying is far better. I shouldn’t need to have thousands upon thousands of words up here. I’m autistic, not hopelessly broken. That I’ve had to live my life refuting that idea? That’s the most damaging thing of all.

It doesn’t really matter what I have to say at day’s end. People like this loathsome creep will never listen to us. And yeah, this was a guy so unaware that he used THAT word in public. He doesn’t matter. But there are others, many others who are supposedly well meaning and who would never be consciously bigoted. But they think nothing of throwing us away. And nothing we will say will change that.

I’m not damaged because I’m autistic. I’m damaged because being autistic means something bad in this society.

 

 

*YOU CAN NEVER USE THIS IF YOU ARE WHITE! EVER! Like I’m not wasting any more time on this. WE DO NOT GET TO USE THAT WORD!

Still here

I haven’t posted in 2 months and there’s been a very good reason why. Every time I’ve tried to write, I’m stopped myself. So this is a quick post but its a declaration.

Yes, I’ve been battling violent depression and anxiety. This is true and all too well known to most. I haven’t been hiding from this. I’ve been using every technique I have and I’m finally making a bit of headway.

I’m on an increased dosage of Prozac. I’ll be open about that too. I’m up to twice what I was on. It’s not a slight dose but I’m not a slight case. It’s ok I’m seeking this. I’ve also added an emergency medicine for severe episodes. It’s helped too.

Nothing has been as key though as taking time to be me. I’ve binged a number of Marvel novels. I just read a great Star Wars book. I’ve got three Cathy sets to read at home. I’ve had a few good drinks. I’ve found Austin’s moment.

Lola is doing great as is Amanda. I’ve got people I actually socialize with now. I’m not in isolation.

I have my columns I’m working on. A new one hits Tuesday and another Wednesday.

I have a fiction project I’m working on. It’s coming slow but it is coming.

I’m here. That’s all I’ve got for today. I’m still here. I’m still in the fight. But I’m here.

A Letter to Lola

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Dear Lola,

Today I took you to Delight. You cried and you cried for most of the trip. I could tell you were frustrated because you wanted down to play. You definitely couldn’t do that. You screamed and made my heart hurt.

Lola, I want you to know how much it hurts me when you scream. It hurts me because you’re upset and I can’t fix it. Sometimes it’s because you want the impossible like a snack we don’t have. Often it’s because you want to do something you can’t do like today or when you tried to escape the house the other night. Either way I feel bad.

The worst are when I don’t know. I speak of those mornings when you wake up screaming. You’re pure upset and I don’t know what to do. I feel so frustrated. Sometimes I have to leave the room in the hopes you’ll calm yourself down. Then I’m more scared than I’ve ever been.

Lola, my child, I want you to know how frustrated I can feel as we enter this tricky stage. You’re not yet truly verbal but you are communicating. You’re willful and stubborn. You don’t know your limitations. You’re testing us constantly. It’s hard for me because I can’t just wave a wand and help you. I want to though.

Right now I’m wrestling with a real struggle. Am I good enough? I’ve felt such doubts lately. I’ve screwed up nonstop in every area of my life. I’m not feeling like a successful adult, Lola. I hate that.

It’s hard for you to understand, I know you’re still 2, but then it’s hard for anybody to understand. When you’re an adult, you’re supposed to be fixed. You’re supposed to be this whole thing. And I’m still me. I’m still this guy trying to fix years of being very broken. And I wrestle with him.

I’ve been so mad at so many people of late, even when I’m mostly mad at myself. I hate living with anger but I’ve felt it so much of late. Often it’s just reflected energy from others. Nobody’s happy and it hurts me.

What makes it worse is how I’m not allowed to say how I really feel in public. I can’t vent these emotions easily. I used to throw up statuses where I admitted how I felt at a given moment. Of late I can’t and I hate it. I have to wear a mask even though this isn’t my brand.

Lola, I worry about you. I don’t want you to hurt like I have in life. I don’t want you to face these issues. I want life to go well for you. It terrifies me that you might ever have to struggle like I do. But I know you might.

My fight is to be better so I can be there for you. It drives me to fight even when my reserves are gone. I do it to make sure you are happy. I’ll never stop doing it.

My angel, please know how much you are loved. I ache because of that love. I want only to make you smile. When we snuggle while taking a nap, I feel rare moments of fulfillment. In these moments I feel hope. You are my star.

Love,
Papa

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My 5 Worst Meltdowns

Meltdowns are almost forbidden as a subject of discussion. There’s this terror of admitting that you have this horror in you. That under the right circumstances everything you’ve built as a mask can collapse. But they’re there and you have to face them.

I’m writing this not to self flagellate but to release. I want to come clean and own what I did to grow. These are 5 times I snapped and it went badly. I’ve ranked them in order of destruction in my life.

Honorary mention: the 2001 Missouri/Northwest Arkansas trip I’ve written about before. All because I didn’t realize bookstores don’t work like Amazon.

5. The time I snapped because a movie didn’t play Little Rock. This is a very minor one but I feel such shame it had to make the list. In the spring of 2007 I was excited for a comedy to play Little Rock. Then it didn’t make the Rave’s listings. I broke. An RA had to help me calm down. This was such a silly reason but it came just before college graduation. I didn’t have a job lined up. I was under pressure so I broke. Nobody was upset with me but it was such a silly reason. Then there was the humiliating kicker that it did indeed play that week. And the slightly redeeming factor that it was Hot Fuzz which became a favorite movie that week. Still bad.

4. A breakdown in a Walmart because a gift card didn’t work. Spring 2014. Notice how all of these are adult stories. These are the ones I can’t bear. This one happened because a gift card I had wouldn’t run. It happened at a moment when my funds were low. This one hurts me because of how nice the clerk was to me. I was collapsing and he was being so kind. I felt certain I couldn’t show my face around him ever again. I did ultimately. In fact he became a beloved figure with Amanda and I for how nice he was to Lola. But that realization of what a monster I was hurt.

3. The time I was handcuffed during a meltdown. Same season. I’d just crashed my car. Pretty great reason for a meltdown. That’s not the reason I have this here. The reason I have it is how I was treated. I was handcuffed and put into the back of a police car. It not only didn’t help that I tried to explain I was autistic, it made it way worse. I’ve never been so aware how dangerous these are to me. I could have been maced, tased, or sadly shot. This one is less on me but a reminder that society does not understand me.

2. The meltdown at work over satellite radio. Fall 2010. This ended so badly I left work early and had basically a complete psychotic break the next day, nearly escaping to Memphis for a day before turning around halfway. I was on the phone with a satellite radio representative trying to get an answer to charges with no luck. It built and built to a screaming fit. At work. I was shamed hard for this by my coworkers. If I hadn’t had family on site by nights end I wonder how I would’ve handled that night. This is the single greatest humiliation of my adult life. I still want to apologize to those I angered that night. I will never forgive myself for it. So what could be worse?

1. The meltdown on the playground in November 1994. There are moments that destroy your life. This one is the most destructive moment of my life without any doubt. Yes, I was 11. No I don’t hold it against myself. But I don’t ignore that the meltdown I had for being punished for acting out in class destroyed my 4th grade year and for a long time my image in Conway. It was the moment I became a pariah in that town. I was mocked endlessly for it. I heard the things I said over and over. It’s sad but this was the moment I’ve spent my life outrunning and often repeating.

So these are five moments I’ve lived with. What can I see from them? They’re almost all times of high pressure. I was moving during #4. I had just moved to a new town before #1. Graduation looked over #5. They’re also moments where what haunts me most is how I hurt others. That’s the really painful thing.

But there is hope. I do let go in time. It took turning Fort Smith into my happy place when I’m stressed to release the first incident. I’ve exorcised Conway by accepting the world didn’t know how to help me. The others I’m still fighting. But I will get there.

I must accept this demon. Maybe that’s how it’ll die.

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Live in a dorm: The most important advice I’d give an autistic youth

The subject of advice is always a tricky one. No piece of advice works for everybody and that’s true for autistic people especially. We’re not a monomind. So thinking of one piece of advice is risky. But one idea has been rolling around in my head and I think it’s worth discussing: If you have any intention of living on your own as an adult, live in a dorm.

I know this is weird but bear with me. No decision I’ve ever made helped me grow more than silencing the voice in my head that screamed at me to stay in town and go to a local college. I had two options after all. I could have lived at home. I chose not to. I chose to go away.

Why was this a vital decision? I mean if you’d looked at video of me at any random point during my first semester of freshman year, you wouldn’t think it was. I spent a lot of that time crying, having anxiety attacks, and falling into delusional psychosis towards the end. In theory, this was a terrible decision.

But it was needed. I had to go through it. The person I became because I survived that semester is indisputably a much stronger person for it.

See, going to college is a great way to test the waters of adulthood. You’re reliant on yourself to stay properly fed. You’ve got to be in control of your own schedule. You have to stay on yourself to succeed. At the same time, you’re not paying your utilities. You’re in school but unless you have a part-time job, you’re not working. (Get a job btw.) You’ve got a safety net.

Living in a dorm was also a vital crash course in socialization. You don’t really get to be a hermit. You probably have a roommate. You definitely have neighbors. You have to learn how to interact with them. You’ll learn fast that no matter how patient your family was with your meltdowns, society won’t be.

You’ll also learn something truly important: Who are you? When you’re in an environment without a wave of people you know–I knew one person from Conway in college–and your family around you at all times, you figure yourself out. I wouldn’t say I changed much but I developed an awareness of who I am there. I became more secure in who I was.

The person you become out of college will become a functional adult. You won’t be scared to go out on your own. You’ve cracked the four year training program. Time to live.

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Running wildly through a mall: Deconstructing a dream

There is nothing that interests other people less than hearing about the dreams of other people. I know that. Dreams are surreal fantasies that only consist of pieces that matter to the person having them. The most compelling dream to one person will bore the hell out of another.

I’m autistic though. Being interested in things that only I care about is how I live my life. And dreams are a function of the mind to be studied. This blog exists to study my mind. So after two nights of a dream recurring, I thought it’d be useful to take it and fully dissect it.

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The dream itself is simple. I’m racing through a one-level shopping mall, recognizable as the one in Hot Springs, Arkansas, trying to get out. As I go through the mall, I pass surreal stores such as variants on Kay-Bee and Waldenbooks. There are long stretches of empty space save for carpet and wood paneling. The lighting is a gray void. I’m frustrated.

So let’s take this dream apart. We’ll begin with the setting which works on two levels. On the first, the Hot Springs Mall was a special place to me growing up. It was a magic place with all kinds of neat things to buy. I found many of my “grails” there growing up including the DuckTales the Movie comic book. It’s also an orderly location which works perfectly for the autistic brain to use as a dreamscape.

I’m racing through it. This is a hallmark of dream logic. A location like this isn’t actually hard to get in and out of. It takes 10 minutes to cross if you’re going slowly. The mall has a very simple corridor, a long stretch of stores, one large open area with a fountain and two department stores, then another stretch. It’s simple but I can’t get out. I’m trapped.

What of the stores? It’s telling that in my dreams I don’t see the increasingly sad boutiques that fill it now. I see the bookstore and toy store that are no longer there. Neither has been there in well over 10 years. I don’t even see the candy store or Gamestop I go to. I’m at a point remove from my real life. It’s really telling this isn’t a place I’ve been in over 5 years. I’m not at the mall up the street.

There’s the empty space. This is heavily a detail from the real mall, especially as it decays tragically. But that space is an irony. I could get to what I wanted if I tried. I’m battling air. The lighting reflects my limbo. (The mall itself is the standard warm lighting you’d expect.)

I’m frustrated. Here we come to the center of the dream. I’m struggling with something in my waking life. But what? Well, Lola and Amanda have both been sick for the past week (and still are) and I was sick myself. It hurts me that I can’t help them. I’m scared for them. (I really didn’t care about my own health. I was up in a day.)

So why this prison? Because it’s a safe place. What seems like a dark dream is actually a soothing one. I’m in a place that makes me happy, one that sadly no longer truly exists or will ever exist as it did. I feel secure here. It’s an escape to my childhood.

What I need to conquer in my waking life is my worry. And that I will do. It’ll take time but it will get fixed.

But now I need to sleep.

A simple vent on my state of mind

This’ll be brief but I feel like I need to get this aired.

I am nothing if not a committed ally to social causes. I believe very firmly in what I believe in. I am a strong believer in fighting the ills of the world. But you won’t see much of that in my social media feeds. In my social media feeds, be it Twitter or Facebook, I tend to discuss either my personal life or the frivolous, silly things that I like to talk about such as comics or movies. I do tend to focus on issues of gender equality at times and I’ll always go to bat on autism causes but otherwise yes, my feed is light.

I’ve never really felt bad about that until the last two years. With the shift in the national conversation, things have made it harder and harder for me to keep that barrier up. And I get it. Things are bad and people need to talk.

So what I am about to say is simply me venting. I am getting sick and tired of feeling guilty about the fact that I keep that wall up. All of the quotes and calls to action I’m seeing? They’re part of why last May I had a severe mental health crisis to the point of needing to leave social media for a few days. I am active in my offline life in these fights but the sheer overwhelming guilt that I’m feeling online is starting to get to me.

The thing I think people need to know is I work in the media. I’m surrounded by the state of my world nonstop. I never stop hearing about the very serious issues. My life is spent on “what really maters.”

Social media is my escape. And before anybody says that it’s privileged to have that escape–and yes I’ve heard that argument–I need to repeat that I had that crisis in May. And it came on the heels of a minimum of two more. I actually had to reenter therapy due to world issues. I need my escape to stay sane.

There’s another issue too. Right now the world is filled with better voices than mine. Trust me I follow most of them. There are others who are just better at speaking out than I do. I don’t have any credibility on serious issues. I’m not someone to trust. Listen to them, not to me.

I care. I really do. I’m all for the classic forms of protest. I’ve called my reps. I’m aware at every second of what’s going on. I take this all seriously. Really, I do. I’m just not sure what more I can say beyond things are wrong.

So yes, my feed will continue to be light and fluffy. Don’t read it as someone blithely fiddling while Rome burns. Read it as someone desperately trying to manage their self care in public.