Twelve Secrets About Life with Autism That Autistic People Are Afraid to Share

Recently, I saw a Facebook post from AWA (Asperger Women Association) about how autistic people themselves are the real experts on autism. Even psychologists, counselors, and parents of autistic children often have preconceived notions planted into their heads by the media or by someone who thinks they know how all autistic people are based on their experiences with one person. If someone tried to explain to me what it’s like to be a neurotypical, I may be able to digest some of the information, and possibly imagine what’s going on in the person’s head, but I can’t say that I would understand it per se. A neurotypical can never fully understand what it’s like to be autistic, just like how I will never understand what it’s like to be neurotypical. Autistics and neurotypicals can sympathize with each other and be friends, but understanding is not possible without firsthand experience. That’s why even “experts” oftentimes spread truths about autism that aren’t truth at all. The real problem, however, is that lots of autistic people hide their thoughts and feelings from the world due to fear of ridicule, and that has to stop. If we wish for autistic people to have equal rights, and for society to be educated on autism, somebody needs to open up the hush-hush box and expose the workings of their mind, which is why I wrote this article. Please keep in mind that the following reflects my experiences, and while some (if not most) of them are true to an extent for some people with autism, I cannot speak for everyone.

12. We’re forced to act in a way that is unnatural to us. 

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Ever since I was a little girl, there was always someone breathing down on my neck and telling me how I’m supposed to behave. Some of the things that come naturally to you take effort for me. Eye contact is probably the most obvious example. Autistic children have a tendency to avoid eye contact, and this frustrates–angers–even infuriates many people like teachers and parents. The reality is that autistic people can make eye contact; we just don’t like doing it. Looking into another person’s eyes makes me uncomfortable. To me, having another human being’s eyes staring into mine is almost a form of scrutiny, like they’re probing my soul with a fine-tooth comb. It feels like an invasion of my privacy. Nonetheless, I’m forced to let people invade my privacy every single day, because that’s what people are expected to do. While I know that when I raise my head and let my chemistry professor gaze into my eyes, he isn’t really hunting for weakness that he can use against me (I may be autistic, but I’m not stupid) it sure as hell feels like it. To avoid pissing off the other person, I end up responding by raising my head and soul-scouring him back. What I always found odd is that non-human animals, like dogs and even chimpanzees (our closest relative) consider eye contact to be an act of aggression, while humans, at least in this culture, think that not making eye contact is an act of aggression. Another example is this classic, scripted conversation between two people: “How are you?” “I’m fine, how about you?” Everyone pretends that honesty is the best policy, but what would you do if you asked someone how they were and they actually said they weren’t fine? You’d probably be irritated with them. In a parallel universe where people are open about their feelings, I’m sure that it’s much easier for people to help each other. I’m not saying that I would be more content if people could run around the supermarket yelling, “I want a divorce!” That’s a little much, don’t you think? But imagine a world where people can ask each other how they are and are totally chill with a non-scripted response. I’d be cool with that.

11. We can read body language and understand sarcasm; we just have to be taught. 

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Children with autism often struggle with sarcasm and body language, but that doesn’t mean that we can’t learn. It’s just that it’s not intuitive to us. For the most part, I understand both, and I hate it when people say, “Well, you’re autistic, so you can’t understand body language.” You don’t live in my mind, so please stop telling me what I can and cannot do. I know my abilities, so nobody has any right to tell me what my abilities are, especially not just based on my classification.

10. Autism Speaks is not my friend. 

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Autism Speaks is a noble organization, right? They want to make the world better for autistic people. Well, that’s not exactly how it is. The truth is that they are actually against autism rights. Here are some factoids on them:

–Most of the money they make off of walks and other donations doesn’t go to autism research.

–They want to “cure” autism and free the world of us.

–They don’t allow autistic people on their board. Seems rather discriminatory, right?

–They made a documentary, “Autism Every Day” with a scene where the parents sing a song about how unlucky they are that they have to put up with autistic children. Furthermore, in the documentary, a woman admits that after her daughter was diagnosed with autism, she seriously thought about driving the daughter over a bridge, and the only reason why she didn’t do so is because her other daughter was waiting for her at home.

Do you still want to go for a walk?

9. We can live (mostly) normal lives, and we’re quite capable of being great employees…if you give us a chance.

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I have my strengths and weaknesses, but doesn’t anyone else? Being autistic doesn’t render me unable to get a job, volunteer, attend college, or even date. I have heard of many other autistic people successfully earning degrees, getting good jobs, marrying, and raising children. Although I am not quite ready for children yet (I still need my education and I may have some emotional maturing to do.) In my senior year of high school, I was selected to take part in a program that allowed me to take college courses. I graduated high school with a $250 scholarship as part of an award for my writing in the school newsletter. After that, I entered a transition program, where I held a job as a library assistant and a brief internship at a doggy daycare center. While I do not yet have a major, I currently attend college, and I also volunteer at my local animal shelter. Unfortunately, there is a much higher percentage of unemployed adults with autism than neurotypicals. http://www.npr.org/sections/health-shots/2015/04/21/401243060/young-adults-with-autism-more-likely-to-be-unemployed-isolated Why exactly is this happening? Most likely, employers overlook autistic applicants because they assume that the applicants lack the competence or mental capacity to be good employees.

8. Meltdowns and shutdowns aren’t naughtiness (but most people treat them as such.)

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Meltdowns and shutdowns are caused by a child being overwhemed, either emotionally or due to excess sensory stimuli. The child cannot help having them, and there are things you can do for a child having a meltdown. Sadly, most adults will talk down on the child, telling the child that he’s being a brat or needs to control himself, which will only cause the child to feel ashamed and possibly create problems with self-esteem. This is such a crucial topic that I previously wrote an entire article about it: https://thezoophanatic.wordpress.com/2015/07/20/regarding-autistic-meltdowns-what-they-are-how-to-deal-with-them-and-why-a-child-having-a-meltdown-is-not-a-naughty-brat/

Also, I have linked this helpful chart: http://3.bp.blogspot.com/-RAU-6HdRd7g/VXTX_1m9mtI/AAAAAAAAAdI/dzEHfXEW3oY/s1600/Screen%2BShot%2B2015-06-08%2Bat%2B9.43.27%2Bam.png

7. We do feel empathy, and we’re not dangerous–there’s no need to be afraid of us. 

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“Autistic people aren’t empathetic.” That’s a misconception you probably heard quoted by “experts.” The fact is that the opposite is true. People with autism are highly empathetic, to the point where we shut down in situations where other people are stressed. This shutting down is a built-in mechanism that protects us from becoming stressed to the point where it may be physically detrimental, although it usually happens when we’re already overwhelmed. The shutting down that protects us when too much of someone else’s stress is rubbing off onto us is also most of the reasoning behind the fallacy that we lack empathy. An onlooker sees a tense situation where someone is stressed, and while others are showing signs of empathy, there’s an autistic person in the corner who’s stunned beyond her wits. To the onlooker, it appears that she is nonempathetic. There are some children with autism who show violent behavior, but it’s not because they have actual malice. It’s because they don’t know how to handle stress in a constructive way. Even “violent” autistic children can learn how to handle their emotions in a healthy way. Adults have to explain to them that there are ways to handle stress that don’t involve hurting others rather than chastise and punish the child. Let’s take a breather, shall we? Here is a list of the things I want to do right now:

–Jump around outside and play in the leaves

–Listen to The Beatles

–Watch Futurama

–Play with kittens

–Read a good book

–Eat chocolate

–Snuggle with my boyfriend

–Take a nap

–Get some crayons and an adult coloring book and color my heart out

Now, here’s a question. Do you see anything on this list that involves hurting someone else?

6. Anxiety, depression, and autism are cousins.

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Autism and anxiety are like smoke and fire. Where there’s autism, there’s a good chance that anxiety isn’t far behind. I tend to worry about things that other people think are stupid. For example, I use a private bus service because I’m terrified of the prospect of driving. “Big freaking deal,” I can hear you saying. “Everyone drives, and most people don’t die from it. Stop being such a pussy.” What you’re not taking into consideration is how my mind perceives the idea of driving. Here’s how I think about the idea of myself driving: I’m operating a two-ton apparatus. If I’m not careful, I could total it, shut off someone’s phone/electricity, or, in the worst case scenario, accidentally kill someone with it. My grades are another thing about which I am deeply neurotic. If I get anything less than a B on a test, I spend the rest of the day kicking myself. Depression also commonly occurs with autism. I suffered severe depression as a teenager, to the point where everything seemed hopeless, I thought I had no reason to live, and I thought suicide was the only option. I constantly contemplated running into traffic, jumping out of a window, putting a plastic bag over my head, or simply slashing my veins open and waiting until I bleed to death. Although I attempted some of this stuff, I luckily never succeeded. Each time I tried to commit suicide, I backed out. I guess I somehow knew deep down inside my heart that there was something better waiting for me, and there was a part of me that didn’t want to die. I’m glad to say seven years later, I am now depression free. However, every day there are tons of other autistic people crippled by depression, and some of them don’t make it out. In fact, this article explains how, due to the mistreatment and abuse that befalls most people with autism autistic adults have a much higher suicide rate than neurotypicals. https://www.psychologytoday.com/blog/aspergers-diary/201303/new-research-autism-and-suicide Startlingly, autistic adults are 28x more likely to contemplate or attempt suicide than neurotypical adults.

5. Most autistic people are victims of bullying and abuse; this can lead to depression, suicide, or Post Traumatic Stress

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This probably shouldn’t come as a surprise. Not only are autistic people bullied at school, but some are abused by their family. There are many cases of autistic children being abused by parents, and there is more than one case of a parent killing an autistic child. Sometimes the abuse happens with good intentions. For example, a center for people with autism in Massachusetts came under scrutiny not too long ago for its unethical use of shock therapy to change behavior. http://www.cbsnews.com/news/controversy-over-shocking-people-with-autism-behavioral-disorders/ Sadly for the children being bullied, there are actually people glorifying this ghastly behavior. A disturbing article recently came out about the “perks of bullying autistic children” from Autism Daily Newscast, another seemingly innocuous organization that doesn’t support the rights of autistic people. I will not even link that horrific article, but I will quote some of the ways they say bullying is good for autistic children: “team work.” The link between bullying and teak work is beyond me. “More friendships.” Actually, the bullying that I suffered as a child was sometimes flat out brutal. I’ve had people call me names, I’ve been hit, and I’ve had rolled up aluminum foil shoved in my face. To this day I still have post-traumatic stress, although I’ve gotten better at making friends and talking to new people. However, I left middle school completely scarred, to the point where I kept to myself. I wanted to make friends, but I was so scared of being bullied that I tried to keep a low profile and avoid people as much as I could. Tell me again how being bullied helped me make friends. “Self-esteem.” Because of the bullying I suffered as a child, I still struggle with my self-esteem. I was taught from an early age to hate myself and be ashamed of myself. I was taught that I was the scum of the Earth, and that I’m a bad person who doesn’t deserve anything good. Tell me again how bullying helped my self-esteem.

4. We don’t have faith in others, and we want friends, but we’re scared. 

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Children are adorable. They have so much innocence, and yet the thing that’s most endearing about children is their greatest setback. There came a time in my life when, after enough bullying and abuse, not only did I give up on people, but I also learned to expect mistreatment. Only recently have I been learning that the world isn’t all bad. When I started high school, I wanted so badly to make friends. Everywhere I looked, there were people talking to each other. Then there I was, trapping myself in my own impenetrable bubble for fear of being ridiculed. Every day I built walls around my heart. I built those walls to protect my heart from the many barbaric swine that wanted to break it. These walls kept out the demons, but they also blocked out all of the good things that I wanted and needed. Within those walls, my heart starved and suffocated, growing wearier each day, until it felt less like a 14-year-old heart and more like a 114-year-old one. After I realized that most of the other students at the new school seemed nice, I opened up a little, and it took some time, but I eventually let down my guard. Despite all of that, I still retain some of the cynicism I brought with me to the first day of high school. There was one day when I was crossing a street and a car approached. Just as I started running across the road, the driver slowed down for me. As I nodded my thanks, I thought to myself, “If she knew I was autistic, would she still have stopped for me?” When I started volunteering at the animal shelter, I felt the need to tell the other volunteers that I was autistic. I braced myself for at least one person to turn vicious, spew profanity and tell me to get out, but much to my surprise, nobody even gave me a dirty look. That was the moment when I realized that perhaps people aren’t as hateful as I thought they were…

3. We have no faith in ourselves, either. 

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Bullying and abuse can have harsh effects on a child’s self-esteem, and this can continue into adulthood. I can’t count all of the times I would stand in front of the mirror as a teenager (or even now, occasionally) glaring at my reflection while growling, “You’re a stupid, ugly bitch! Nobody loves you, and the world would be better off without you.” Today, I usually have a great relationship with myself. Teaching a child her own worth should be the first thing on the minds of every teacher or parent, but how can a child learn her own worth when people are constantly trying to convince her that she has no worth? How can you love yourself when nobody loves you? What good do you think you are if it seems that you’re unwanted everywhere you go? Sometimes I still beat myself mercilessly over everything. Each time I make a mistake, I say, “Goddamnit, Gina, you can’t do anything right!” As of now, I have learned to snap out of that mentality. After that phrase, I usually say, “You’re human, and humans have flaws. It’s okay to fail.”

2. We worry we’ll make a social mistake and offend someone. 

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I mentioned previously that autistic people can learn social skills. Most people learn things by making mistakes, and that teaches people what not to do. That means making lots of social faux pas, and as a child, peoples’ reactions to your social mistakes can be confusing and overwhelming. Some people will react to a small social faux pas the same way they’d react to murder. Because of this, I sometimes suffer from stress when I’m interacting with others. I don’t always have faith in my own social skills, so I step cautiously, always anticipating that moment when I provoke someone without knowing what I did wrong.

1. Autistic people are just people like anyone else. 

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It can be hard to believe in a society that shuns and oppresses people with autism, with a media that portrays us as drastically different from others. When it gets down to it, we’re people just like you. We deserve to be loved and respected as much as anyone else. We have a simple difference, but there’s nothing wrong with us. Even with all of its challenges, autism is a beautiful thing.

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6 thoughts on “Twelve Secrets About Life with Autism That Autistic People Are Afraid to Share

  1. Great article. I can really relate to some of your comments and feelings. I don’t think it’s an austitic thing with some of the feelings you’ve felt I think it’s a being human thing. Everyone who is bullied or belittled feels the same way you have described. What is positive is that you have started to do what others find so hard, you’ve started to accept yourself for who you are. This is a challenge for every human being on this planet however society decides to label you. Keep going, your on track 🙂

  2. A very enlightening article. My step-grandson has Asperger’s and my nephew has ADHD. This has opened my eyes when it comes to empathy; this is touted all the time as a major component of having autism. Why does everyone promote the lack of? Infuriating to say the least. Thank you very much for following First Night Design!

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