Sometimes, when I am having uncontrollable anxiety, I chase the fear down in my head. A door will lead to a door will lead to a door, and suddenly I find myself in my own eye’s as a child. I see the even unfold as I remember it, and I remember what thoughts I was having, my bodily sensations, and the lesson I learned.
And then, I ask myself if it was a True lesson. The answer is almost always “No.”
As an autistic person (who grew up as a girl), it was on me to figure out and understand the rules that people were making up from thin air around me. There were rules I could see: I could read at a young age, and so I could see written rules, and those made sense. However, there seemed to be times when I made adults Angry. That made me feel sad because I didn’t understand why an adult would be angered by such a little person, but because I was too scared of what the adult would do if I kept resisting, I internalized that rule and strove to not break it again.
It became confusing when my family opened up at the marriage of my sister, who was 14 years older than me. He was the first man I was exposed to on a regular basis that wasn’t my brother (my father left before my 2nd birthday).
My family loves roller coasters, and we all–my sister’s husband included–went to six flags when I was 6 or 7. Quite young to be on grown-up roller coasters. The adults wanted to all ride the Georgia Cyclone, but it was very loud and rattly and I was scared to ride it for myself.
My sister’s husband made fun of me the entire way up to the roller coaster. He belittled me, made fun of me, and my family joined in. Only my mother protested, but the damage had been done. I rode the roller coaster and it scared me terribly. It rattled my teeth. I didn’t make a sound–not even to scream. I ignored all the anxiety and fear I had in my body and allowed someone to dictate my experience. A man, no less.
I was given so much praise for my ability to supress fear that I lived that out for the rest of my life. I stopped listening to my body, my intuition, especially at the advise of men who had no interest in keeping me safe, but who had every interest in sexualizing a young girl.
That was the first time. The very first time that a man punished me for telling him no, and I gave in with the encouragement of those who I loved and felt protected by. This is a pattern I have lived over and over since then.
The issue is–I now love roller coasters. I wrestle over I would have loved them if I hadn’t ridden that first one when I was little. I probably would, and I could have felt empowered and brave within myself if I had been given the option for bodily autonomy in that moment. Instead, my consent was overridden, and I learned that making other people happy with me was more important than listening to my own body.
I learned in that moment, that something was a rule that I would hear about over and over again by the men I was in close relationships with: “Trust me, you’ll like it.”
From June 24th, 2020
If you are getting this email, it’s because I feel the need to share this information with you. I don’t expect you to answer me, and frankly, I’m sending this to a pretty wide ranging group of folks, so if you don’t respond ever, I’m unlikely to remember or hold it against you. I’m telling you this up front so that when you open this email, you’re not on edge. I care about how you feel as you’re reading these words. I hope that you can hear my tone, a voice that you know well: one that cares a lot about you. This email isn’t carrying any anger at all, only information which, as you know I love.
You know what’s going on with my husband, and how turbulent things are right now. Well, imagine that, in the midst of that, not being able to function. Literally. Imagine breaking down in total tears in panic while on the phone with your husband’s brother (who you’re not at all sure likes you) because you’re so terrified of your own husband that you cannot speak through it, and trying to explain why you’re suddenly overcome. Then imagine trying to explain yourself, over and over, to people who keep asking, “I thought you were fine, and loving quarantine?”
Imagine discovering, the middle of your husband’s mental breakdown, that you seem to be having one of your own. How horrifying. When you’re in your room, you’re fine. In fact, it’s nice in here…
I can put on headphones and slowly organize my own room. In here, I’m safe. I can fold clothes. I can make my bed. I can bring order to the chaos inside of my room, but I cannot seem to bring order to the chaos of voices inside of my head. Usually I know exactly what my day will look like: I have it planned out from 8 AM until 8 PM. And then I get a structured hour of free time and after that I should really go to bed. (I don’t. I can’t fall asleep lately before midnight because my thoughts are clamoring in my head, and then a baby wakes up… you get it.)
Unfortunately, I cannot stay in my room. People need me outside–my husband can’t seem to handle the children on his own after he comes home from the mental institution. Mental Institution. I say those words a lot and giggle a little bit after those words every time, especially when I am alone. I never thought I would be saying those words out loud, much less out loud in a house that we somehow live in with kids I’ve somehow had with my own body and a husband who is in a mental institution.
But anyway, as I was saying–I do that, going off on little thought tangents all the time–my partner can’t seem to handle the kids without me. That’s odd to me because I’m not special, and I’ve somehow done it before and have lost that skill somewhere, but he needs me, so I put myself together (in the wrong order) and wear my Happy Mommy mask until bedtime, when I collapse into a gigantic ball of emotion.
I’m confused, my husband is confused, and all of the kids are scared. I can see how scared we all are, the whites around our eyes showing. Anthony is cut by me, my anger, my emotion, my white-hot truth-telling tongue seems to be cutting him all over. And then I see my kids cut him, and seeing Anthony get harmed by me, by my kids, it spirals me down all over again. I can’t even mention my partner, who seems to handle me like I’m just made up of sharp edges. I feel like a … butterfly knife or something. Something sharp and dangerous and very deadly in the hands of someone skilled with it.
Looking back, this Autism pattern fits neatly over my whole life. It’s so strange though… because…
Ah, here’s the best example: become aware that you’re breathing.
Please. Just do it. Think about the fact that you’re breathing. You do it all the time. You don’t think about it, right? Unless I tell you to.
What if I told you that I had to think about breathing in order to breathe? That my whole life, I thought everyone had to think about breathing. That we were all just together in a room, y’all breathing without thinking about it, and me–watching you breathe and imitating the breathing motion, thinking that I am required to operate that way in order to stay alive. No one told me that breathing is automatic, so why would I mention to other people how I’m breathing?
It has come to my attention that I am unique, which is weird, so here’s what it’s like:
Every single day I am aware of every word, facial expression, vocal tone, and hand gesture. I have spent my life carefully curating a personality based on imitating those around me that I love. That radio voice I use on the mic? Classic Ron–finding my lower register and leaning into the mic. The way I read Geeks rules? That’s Josh, who showed me that being quirky and having a big personality can be leveraged on stage in order to BE on stage. My mom taught me quick-witted insults to hurl back at kids who were mean to me. I built a personality based on other people that I thought would serve me best, and I think I’ve done fairly well considering I’m still alive and fairly happy. Or I was, until the quarantine.
You see, every single day, deep in the recesses of my mind, always running like a little motor in the background is the program “Fear of Being a Bad Person”. Every move I make is processed through this motor and filter in the back. Everything I say or text, emojis I use, all of this, is processed through a “I’m trying to be a Good Girl” filter.
When I was young, I didn’t think I was a Bad Person.
When I was in preschool, I was lauded. I had friends. I remember my friends Jason and Summer to this day. I remember feeling safe and cozy in my elementary school in Wetumpka, Alabama. I remember my mother ensuring that I was put into an advanced class in kindergarten. Teachers could tell that there was something different about me, but also, they couldn’t handle my fidgeting, my impatience with kids not being fast as I was to know the answer. I would roll my eyes, make faces at the other kids, get up–because I knew all this stuff anyway–and go away from circle time. That was Bad.
And then suddenly I spent most of my day with older kids. I got to do Tangrams, write plays, dress up and hang out with kids who seemed to accept that I was a bit smarter, a bit different. My mom fought for that for me, every time.
But then my mom got remarried. Moving mid-year in 2nd grade was difficult. I didn’t understand the new kids, the nuance at the school. I didn’t know who could be my friend. I didn’t understand the wealth gap. By the time middle school came around, I was regularly teased for the clothes I wore. I would cry to my mother about the teasing and she would throw up her hands, confused and furious because I had picked these clothes out. I would alternate between starving myself and eating furiously and crying when I got home from school. I would wear baggy clothes because boys would pop my bra strap, and make unwanted comments about my body. Suddenly my outspokenness made me a target. Boys started to touch me without me wanting them to, and I didn’t understand why. I also couldn’t seem to make it stop, no matter how baggy my clothes were.
Once I told my mother about a boy grabbing me on the bus, and I am talking about hand between my legs and squeezing at my vagina as I walked off the bus to my house, and she told the principal. I was forced to confront the boy and his mother in a locked room… his mother, who sat across from me and called me a slut and a liar. I have a very hard time being called a liar.
I don’t lie. I really don’t want to. If I am being forced to lie, it is because I believe social nuance demands it. I don’t really like your new haircut, but I’m required to lie about it because telling the truth is rude, in that situation. I’ve learned these boundaries by repeatedly being punished (through embarrassment in public and repetition).
So you can see how it might be tough for me to hold a job when I make off-the-cuff comments in meetings like “If we care about diversity so much, how come we don’t have any students of color or low-income students in our most expensive residence hall?”
And, “Are you kidding?! Tornadoes just ravaged Tuscaloosa. If I had extra money to give, and I don’t, I’m not going to give money to the this scholarship fund.” (This was after the deadly tornadoes ripped through my home town–because Tuscaloosa was my home, and I couldn’t believe that I was being asked to donate to the scholarships of rich, mostly white, kids when the Black community in Tuscaloosa was in literal rubble.)
Is it any wonder that I couldn’t seem to stop making mistakes in detail work, which I’m not interested in? Doesn’t it make sense that you’ve seen me not be able to sit when I’m playing board games that I’m excited about? That I get so nervous if there’s a scoring error during quiz, I drop my papers? That although I love public speaking, my hands shake uncontrollably?
A repeated phrase through my life has been “I know you’re a smart girl, why can’t you get this?”
If I am a Smart Girl… why can’t I seem to understand people? I guess I can’t really be a Smart Girl. So I guess I should stay home with my kids since I can’t seem to hack it out in the “real world.”
Imagine my relief when my psychiatrist spotted me immediately. I think my brain is completely broken. I am telling everyone I run into that my brain is broken because I don’t know who can help me. I can’t get it together because the person I’ve hyper focused on for the past 7 years isn’t around–and even though he is home now, he is different and I am different and together we aren’t the same.
Imagine my relief when my psychiatrist lets me in on a secret that other people are just breathing naturally, that it’s not my fault that I have to work so hard. Imagine figuring out that all of those times that I was touched without consent, made to feel stupid, made to feel less than, screamed at, rejected, and put on performance plans and forced to fight for your right to have a job and speak the truth… that it wasn’t because I was deficient… it’s just because I am different.
I had piled on mountains of guilt for hurting people’s feelings. Those moments of embarrassment and shame in my life are vivid memories, and they read in my brain like well-worn books. I take them out and remember them, literally read about them, (I write a lot about these moments in my journals) so that I can make sense out of them. I’ve gotten smarter over the years because I’ve allowed myself to learn how to type as fast as I think. And then I can pour out all of these thoughts on paper, edit them and use them to communicate.
I used to spend hours as a kid in my room, writing, coping with how difficult my life was by getting outside of myself and drawing conclusions, writing poetry, acting, performing music. I’ve lost all the time to do any of those things, and that is why I am completely breaking down.
I am Autistic. I’ve always been autistic. If you have met me in the past 4 years, this is a shock. You’ve only known me as a surprising stay at home mom in your life. Yeah, I’m a little weird, but I’m Fun! Right? That’s on-brand for a stay at home mom, I’ve learned.
So if you’re getting this and you’ve met me since 2016, I have to say you don’t know me very well. The people who have made it the long haul, the folks I’ve known since Alabama, they’re seeing a return to the norm for me. This is normal ol’ weird Sam and, yeah, she’s intense but we love her. I’ve told many of my Alabama people first, and you know what they say? “Oh yeah, I can see that… but I mean, you’re still YOU. You’ve always been this way!”
It seems like it’s, well, my newer whiter wealthier friends who are struggling with this. I think it is because Autism has been presented to us [human beings] as a deficiency, and sure, yes, I am deficient in some ways. But to me, it’s like being free. I am free to be honest about not understanding, and you are free to believe me. You’re free to not be scared to say, “Sam, you’re going on about this social justice thing…” because I understand now that I monologue.
I am certain this is me. I am finally seen and understood, and I can see and understand. I’m sharing this with you because I want you to see and understand me. If I have hurt you in the past, I promise you, it was blindly and unintentional. I feel love very intensely, and if I’ve sent this to you, it is because I love you and I consider you safe.
Through all of my life, my faith has been an underpinning of my making sense of this world too, and it will continue to do that for me. I was wonderfully and fearfully made, and I am loved by my creator, and I am an autistic woman. I hope that you can accept that diagnosis with me.
For those of y’all who don’t know, I do live in Texas, the strictest state in terms of voting law and suppression. Due to our large population of (1) uninsured, (2) lantinx voters, and (3) our homeless population, the local governments are not eager to have marginalized groups (particularly poor, homeless, and Black and Brown folx) cast their ballot.
This was true before this year, but this year has become particularly fraught with the governor making it very difficult to cast your ballot by mail. We also, at the same time, have a vast electorate who does not want to wear a mask–a requirement to vote here in person in Texas.
Taking those things, along with the very real fear around Covid spreading unchecked in cities with things like Professional and College football games and other sports, it is highly unlikely that those disenfranchised voters will want to go to the polls.
But here’s the thing: Texas is somehow leading the country in voter turnout. Yes, here in Texas, the electorate has decided this is their year. My county is one of the largest in terms of population, and our electorate has turned out almost 50% of voters already.
I can only hope that this 50% is representative of our state as a whole. There is really no way of knowing right now, but I am so happy to see that no matter who someone is voting for on the national level, people are very involved in their hyper-local campaigns.
This is also bringing some stark issues to the fore: especially when it comes to candidate intimidation, especially for the women of color who are running for local office. There have been character attacks on some of the most upright women I have ever had the pleasure to meet. It is difficult to separate these attacks from their race and gender, as these are the very things being used in the attacks.
This is a problem. It is an individual and local community problem. We have gotten accustomed to throwing mud at a candidate instead of actually debating concrete policy agendas. We have glutted ourselves on reality TV, where insults are freely thrown around to prove a point. The problem with this is that reality TV is not real, but the people who live in your community, who are putting their time and money into trying to serve a community are real people.
If you are someone who thinks your vote doesn’t matter, let me tell you that it does. There is a lot more going on than a presidential election. There are corrupt Sheriffs, judges, district attorneys, and school board seats that your vote very much matters in. There’s no electoral college for your local elections, and your local elections will determine the policies and agendas for your community for the next 2-6 years, depending on what position you’re voting for.
Turn your eyes away from the national spectacle, and instead start looking around in your local community. Who are these human beings running in your town? Are they trustworthy? Do they have a public policy record? Or are you just excited about them because of name recognition.
It is time to vote, yes, but to vote knowing who the hell you’re voting for in your local elections. My suggestion would be to turn to the BIPOC constituency in your local community and figure out their thoughts on who would implement policies that would help rectify the vast inequality among Black folx and other People of Color. Put your mind into the election. Think critically about policies that will produce the outcomes that you want, and then vote for that person. In local elections, especially, sometimes a republican isn’t really a republican, and a democrat isn’t really a democrat.
I am so proud of those who have already voted, and I encourage you, if you are hesitating, to take a look at your local candidates. They need you much more than the presidential elections do. We need you to cast your vote and participate in your local community. And then we need you to hold the people that you vote into office to account.
So go Vote. Be a part of the largest voter turnout in history. Help us figure out what is really needed on the local level. I believe in you.
I am no expert on autism in general, but I am an expert on me. Yesterday was a very difficult day, and I must write about it so that I can see the warning signs for later and take better care of myself.
Yesterday I set a goal: to try and secure a clinical diagnosis for my autism. I have a diagnosis from my general psychiatrist, but for certain things (like government assistance and educational funding), I need documentation to prove that I am autistic.
This is very difficult as a 36 year old woman. The first question I am asked is “Why?” Why would I even want this? Why would I want confirmation that I am disabled and in need of support? These questions trigger me, and take me back emotionally to the time in my life where I was completely out of control of my decisions: college and under the thumb of my very first long-term boyfriend.
The helplessness I felt for those three years, the confusion, the feeling of screaming inside of my head and not being able to escape it was upon me yesterday. I couldn’t escape it or run from it. I reached out to a family member for support, and felt that instead of empathy, I received judgement.
As the night wore on, and my children were being their wonderful joyful and stubborn selves, the thought “I can’t do this,” just kept repeating over and over again. A phrase said to me on the phone just echoed inside of my head loudly over and over again “You can’t handle it.”
I tried my best to not hold on to that thought, but it wouldn’t let me go. I couldn’t think anything else, and I found myself in the bottom of a pit with no way to talk about it. I wanted to write, but I couldn’t think anything other than “You can’t handle it.” The only thing I could do was cry. Like, uncontrollably cry. I cried so much for so long that I was shocked I had water left in my body. My eyes got swollen and I felt completely exhausted, unable to move. The desire to help myself was strong, but it wasn’t as strong as the desire to completely just give up and stop trying to advocate for myself anymore.
The connection of helplessness throughout my life isn’t a rare one in autistic folks. We are often at the mercy of our doctors, especially if the perception around us is that we are “strong” and “together.” Today I called the person I talked to yesterday and told them everything. They didn’t even know the depth of the abuse I had endured in college, and they’re an immediate family member.
You see, I think it’s my fault that I’m helpless, that I should somehow be able to make things happen in this world all on my own. In influence my social circle constantly, so why am I having such a hard time communicating how much pain I am in to my doctors?
It’s a terrible place to exist, and I’m lucky in that I have a support system in my husband, my community of friends, my mentors. I can’t help but think about what would have happened if I had been alone yesterday and in that place. It’s terrifying. Because what if I get worse? What if I can’t handle it? What if one of my meltdowns takes my life?
My big meltdowns are debilitating, especially when they are coming up out of a dark place of despair. Being unable to communicate my pain feels like more pain, like being trapped in the prison of my body and my mind and I cannot run from it because it is within me. And it hurts.
I am trying to take better care of myself today, but I am still in a very restless and confused state. I must own these feelings and talk about them, feel them, and figure out how come this thing that happened to me in college still haunts me. Why this man who claimed to love me, and controlled, starved and abused me still hangs out in my head. I’m hurt, and when I’m hurt I start to self-harm in the form of thoughts. I cut myself inside, emotionally, with awful thoughts. And when I start to believe those thoughts, I can spiral down very far and ruminate on how alone I am in my pain, even if I am surrounded by people who love me.
That is what my worst meltdowns look like. They’re isolating and toxic to me… because these thoughts have been given to me. I didn’t come up with them myself, but because I’ve been forced to make my own way in this world, these little rules and restrictions that the world has put on me are hurting me. Deeply. I have such a strong desire to help others, but I can’t seem to help myself.
This is just one flavor of my meltdowns, and it doesn’t even touch the aggression side of my meltdowns. Those, those feel different, like an explosion from inside of my chest that spreads out until I am screaming and crying at the same time. Those are scary too, but they don’t leave me wanting to die. Those feel protective and productive at times, because they help me escape from potentially dangerous situations.
But this one? The sad meltdowns are dangerous for me. And I am living in fear of the next time it will happen, and how I will handle it.
And that’s on my meltdowns.
IF YOU’RE NOT AUTISTIC, LISTEN THE FUCK UP
I’m autistic and here’s shit you need to know!
- ABA therapy is abuse. There is no debate on this topic.
- Fuck Autism Speaks, they’re ableist and they misuse the money they’re given.
- If you’re not autistic, I don’t want to hear your opinion about anything related to autism. Just listen to us.
- The puzzle piece has ableist origins.
- Autistic people are disabled. Autism is a developmental disability. Disabled is not a bad word.
- You don’t know more about autism than autistic people. I don’t care if your entire family is autistic, you don’t know more than autistic people.
- Mocking people for their interests and calling them cringey is ableist.
- Vaccines don’t cause autism, and even if they did, you should still vaccinate your kids.
- I am not afraid of noise/light etc. Certain sensory inputs cause me pain.
- The r word is a slur. Don’t say it.
- Non-verbal doesn’t mean we can’t hear or understand what you are saying.
- Verbal communication is not the only method of communicating. Just because a person is non-verbal, doesn’t mean they can’t respond to what you’re saying.
- Sign language, writing, sound boards, and cards with words on them are all form of non-verbal communication.
- Do not post a video of your child having a meltdown or shutdown on the internet. Imagine how you would feel if someone posted a video of you on the internet at one of your worst moments without your consent.
- The Big Bang Theory is shit representation. So is Adam and Atypical. If it’s not written by an autistic person, its probably shit. Neurotypical writers can include autistic characters, but they cant write stories about being autistic.
Also Love on the Spectrum is TERRIBLE.
I am vehemently against commenting on the appearances of others. It’s something I used to engage in with relish because it made me feel somehow superior or better about myself. It wasn’t until I had three daughters that I started to really think about the words coming out of my mouth about the looks of others.
My four year old is growing more and more body aware: the differences in her shape and her friends’ shapes, the differences in skin color and hair texture, the differences in manners of speaking and expressing oneself. I am hyper-focused on what she thinks about herself because by the age of 10 I had convinced myself that I needed to stay thin, happy, and guarded 100% of the time.
That’s a lot for a 10 year old to manage. It’s no surprise, then, that I would wear baggy clothes to hide my already growing body. It’s no surprise that I would skip breakfast and lunch and dinner, eating only when I grew so hungry I couldn’t think at school.
I bought magazines that told me who was desirable and who wasn’t, what was cool and what wasn’t, and I modeled my behavior on what I saw. That’s what autistic women do–we mimic and imitate. It wasn’t until my 30′s that I saw the damage that did. Mostly because it was around that time that people commented on my Pregnant and Postpartum body constantly. Suddenly it felt like my body didn’t belong to me anymore. People talked about me as a Thing and not a person, a Vessel and not a mother, someone who had extra fluff as opposed to someone full of milk, and the fat needed to make that milk.
I looked for validation from those around me, people who openly told me they wished they were as thin as I was. That didn’t make me feel better, at all. So I hid. I hid from friends, my community, my church. The quarantine didn’t affect me much at first, because I had already quarantined myself away from people while I was so fragile in the 8 months after my third child was born.
And now, now in 2020 I am watching people make fun of the president: his hair, his clothes, his body shape, his mental health… and it bothers me a great deal. I do not support or like Trump at all, but I’m not going to comment on the body he exists in. He’s got an ugliness and nastiness inside of him, but his body is just his body and it has no bearing on what he has done to the American people.
The casual way with which we comment on the body shapes of other people is harmful. It hurts the person we are commenting on, every time. Because when you’re talking to someone about their body shape, what you’re saying is: the way You Look Bothers Me. And that’s a tough message to accept. Because what is it about my pink hair that is unpalatable exactly? As an autistic adult who has gone diagnosed until just this year at 36, I think I’m pretty good at making myself palpable for others. I know I can make You feel better by putting on my blonde/brown wig, but I don’t want to. I want to feel free to do with my hair what I want, to eat foods that make me feel comforted and healthy, to move my body (to finally move my body) in a way that makes me feel better inside of my brain.
The casual way we comment on others’ bodies is wrong. We’ve been eating internalized hatred of our own bodies since we were old enough to read. Let’s throw away the standard of “beauty” and keep our (inhereted) opinions to ourselves. Let people exist in the way they feel most comfortable, so that we can start moving forward as a team against an opressive world right now. Let’s band together no matter what body shape that we take and start speaking up about how much each one of us is hurting. Let’s stop being so flippant with hurtful words and being appearancist. And then, if you find yourself on the wrong side of an argument where you thought you were giving a compliment, or just joking around, APOLOGIZE for your words hurting the person you’re talking to.
It’s that simple.