My Life as his sister: My thoughts on Atypical and autism representation

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Well, we all saw this coming.

I would like to start off by saying I love that autism is getting a bit more exposure in the media. Did anyone see the debut of the character that had autism on Sesame Street? I was so happy to see this new character. I may not have been able to relate 100% because my brother’s autism is more on the severe end of the spectrum BUT seeing the love and support this character got on her debut made my heart so warm anyway. Any kind of representation is awesome to me.

Now, let’s talk about this new Netflix show.

It’s called Atypical and it follows a boy who has autism and his family. Now, I didn’t think much of it at first. I try not to get too cynical about how a person with autism is portrayed because I grew up with a brother that was on the severe end and I don’t really know if the portrayals of a child/adult with high functioning autism are accurate or not. But, when you have such a wide spectrum with every person acting differently, it might be hard to tell, maybe?

However, I saw a thread on twitter from someone on the spectrum and I wish I remembered her name so I could link it because she brought up a good point. The topics they seem to be focusing on in this show are sex and relationships. It just…rubbed me the wrong way when this girl pointed it out. I’ve never really questioned how an autistic person handles relationships and sex. I know people can go on to be married and have children so it’s never really occurred to me.

But why did it rub me the wrong way?

Because, I think they could’ve done something great with a topic such as autism. There’s still so much people don’t know and there are still so many misconceptions and honestly, I can’t speak for every person with autism, but based on that trailer, it just didn’t feel like an accurate portrayal but I could be wrong.

There are so many levels of severity, so many different struggles with each level. I would want a show featuring three or four different characters, ranging from high functioning to low functioning autism. Get their perspective, their family’s perspective, their school’s perspective, and their friends’ perspective. Looking at the happy times as well as the ugly times. Because yes, there is in fact an ugly side to autism. I see it every day. It’s smeared with blood, shit, spit, self abuse and loaded up with every cocktail of medications you can think of. Of course, that’s not every case but it’s still in some cases. And I think the world needs to see something a bit more meaningful, something to open the world’s eyes, bring awareness to something that gets bigger and bigger with each passing day.

I’m disappointed in whoever created Atypical. It could’ve been…so meaningful and so eye opening. But I just don’t feel the same warmth that Sesame Street made me feel. I feel like Atypical is just going to turn autism into a big joke, something that people don’t need to think about. Yes, they should include the cute quirks, the funny moments, the moments of innocence. But autism isn’t like that all the time. There is an ugly side.

Did anyone see the movie The Judge? With Robert Downey Jr. and Robert Duvall? That movie also featured a character that was autistic coincidentally. But, basically Robert Duvall played RDJ’s father who is on trial for a hit-and-run. Not sure if this is a spoiler or not but Robert Duvall has terminal cancer. And despite the criticism it received for its lack of development of supporting characters (according to Wikipedia) I thought it did a brilliant job of showing the difficult, ugly parts of cancer. You really felt the struggle and the sadness associated with it. If you wanna know what I mean, watch the movie.

I wanna see that for autism. I wanna see real representation. I want some brave filmmaker to get elbow deep in it, showing everything to the world. People may not want the bad parts but that’s the world for you, imperfect, sometimes gross, sad, frustrating.

Perhaps I’m thinking about this too much. Maybe it just isn’t that deep. What do you guys think about the trailer for Atypical? What do you think about autism representation?

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Dealing with bullies

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Hey, I’m back.

Coming up with topics to discuss becomes more and more difficult. I’m not sure if I’ve ever mentioned this, but my life isn’t that interesting. But I do have stories to tell. I have my thoughts and opinions so, here’s something to discuss.

Bullying.

Now, my story is nowhere near as bad as most people. I hadn’t even realized in the moment that my bully was treating me as badly as she was. I didn’t know how truly miserable I was. Funny thing is, she used to be my friend.

It started with little things that no one really thinks about. She always had to be above me. Even her boobs had to be perkier than mine. I shit you not, she literally said to me, “your boobs are bigger than mine but mine are perkier.”

Insulted the music I listened to, the celebrity crushes I had, while also getting pissed off when I did the same. She listened to shit like My Chemical Romance and Fall Out Boy. To this day, the song “Teenagers” by MCR makes me cringe. Basically anything by that band makes me cringe.

Anyways, then it turned into anything she could insult, she did. She also had some kind of obsession with my boobs because she insisted I needed a pushup bra. We were fourteen at the time. What fourteen-year-old needs a pushup bra? Although…it seems fourteen year olds these days are trying to grow up quicker than they did when I was at that age. I’m amazed by how much things change in just a few years. BUT ANYWAYS, we’ll discuss that issue another time.

She made fun of me for wanting to see my dad instead of her. My parents are divorced and at the time, I only saw him every other weekend. Those weekends were precious to me and I didn’t want to give them up considering all she wanted to do was smoke weed and have “kick backs” as she called them. I would’ve been given such hell for not wanting to take part in those things.

She made fun of the clothes I wore. My school had a uniform. You could only wear white, khaki, or navy blue. I don’t know about where you guys shop but it was impossible for me to find anything in those colors that was cute. The only khaki skirt I could find was this awful corduroy thing that clung to my legs. I wore it with this surprisingly cute navy blue blouse that had this cute little belt that came with it. Put on my favorite pair of boots and I felt so good about it.

And what did she do? She said it wasn’t flowy enough, it was ugly. In the ninth grade, I had a crush on this guy and she knew it. She says to me after completely tearing me apart for wearing this skirt, “Don’t you want [crush’s name] to love you?”

I was totally crushed. At the time, yeah, I wanted that guy to like me. I never wore that skirt again. It hung in my closet for the next four years. My senior year I thought I’d wear the skirt as a big middle finger to the bitch but by then, it didn’t fit me anymore. I’d gained at least thirty pounds between 2009 and 2013. Oh well. At least the idea came to me I suppose.

She never put her hands on me, thankfully. Although one boy in that group kicked me, ridiculed me, and he did touch my boob a few times. He was…handsy and weird. He had problems. But anyways, as I was saying, she never put her hands on me but she did fling a meatball at me in an attempt to stain my white shirt. The meatball hit my boot which luckily was (fake) leather and I could just wipe it off. Even the people who hung out with her that hated me were made uncomfortable by that. I said to her, “These boots are expensive! What the hell are you thinking?!”

Her response?

“Why would you wear sixty dollar boots to school?”

“Well, I’m not exactly expecting people to fling food at me!”

She made me feel disgusting when I told her I’d attempted masturbation (TMI? Yep.) I didn’t go anywhere near my crotch for years because she made me feel stupid. She also made me afraid of breaking my hymen with my finger but that’s a whole separate issue involving a lack of education on the female body.

She made fun of me because I wasn’t as wild as her. I sought that group’s approval to a point where I made up a boyfriend just so they’d like me. I begged my best friend to go along with it because they asked her. I’m pretty sure they knew I was full of shit but for a moment, they were nice to me. I hated going to school. I felt worthless, I felt ugly, I felt stupid, I felt weak. I tried so hard to be liked by them. I had one friend tell me she didn’t want to get involved in “Drama between her friends” and my other friend still took me to their hangout spot when I asked them if we could not hang out with them at lunch. I was ignored. I had one best friend through it all that went to a different high school. I considered transferring to her school for a while but I didn’t want to leave my one friend who couldn’t give me that break from those people at lunchtime. One of my biggest regrets is not transferring and getting away from it sooner. I could’ve saved myself the trouble.

The friends I had saw it as drama. And they made me see it that way too. I thought it was just a couple of friends fighting a lot. I wanted to hurt them and that wasn’t normal. I had this idea of what their friendship was, I didn’t realize that my desire to hurt them wasn’t normal. I had no idea what they were doing to me.

Eventually, that girl dropped out of school, did one of those homeschooling things. I forget what it was called but it was one of those drop-out kinda deals. She did try to fuck with me sometime in junior year but by then I (and everyone else) had pretty much gotten over her bullshit. She claimed that the guy I liked in ninth grade wanted to hook up with her to “piss me off” whether this is true or not I’ll never know. I said, “I haven’t even liked him since the ninth grade. Have at it. Congrats.”

She mentioned it a second time. I’ll never forget it. I came into the hallway in the morning before first period and as I came around the corner, she was talking to one of her friends. She turned to look at me and the moment she laid eyes on me, she stopped talking and started grinning. In the back of my mind, I knew what she was doing so I simply smiled back and said, “What’re you so happy about?”

She said, “[former crush’s name] is coming over today.”

I responded with, “Oh that’s nice,” and then I saw my friend outside sitting at our hangout spot and I left her. She never mentioned hooking up with that guy again. She lost control and I think she knew it. I couldn’t be hurt by her anymore.

It wasn’t until senior year, close to graduation when I realized how miserable I was back then. It brought me to tears. How in the world had I endured such abuse? I’m not entirely sure. Hell, you could be reading this story of mine thinking I’m so overdramatic. With all the terrible bullying most people go through, what happened to me isn’t nearly as bad. Was I bullied? I’m not sure. I don’t feel comfortable answering that. That’s up to those of you reading this to decide I suppose.

My friend that “didn’t want to get involved in drama” is still friends with that girl to this day. I haven’t laid eyes on that girl since I was seventeen. My friend and that girl are now living together. She told me that the girl is a totally different person now. I said to her, “That’s nice,” but said nothing more. I hope I never have to lay eyes on that girl again. I’m not sure if she realizes how manipulative and mean she was. I wasn’t the only person she did this to. I’m still friends with someone who was once in that group. She told me that this girl was in fact manipulative and treated her friends like an army. She kinda just went with it. Does that make it right? No. But on some level, I understand it. That girl that I’m still friends with today…we didn’t get along when we first met. We were already tense around each other at the time. That girl made it a hundred times worse. We’re great now, but I’m relatively certain that this girl played off that tension.

Now…have I overcome this? I still think about it a lot. I still think about what person I could’ve been if this had never happened. I’m a naturally submissive, passive person. But I’d like to think I’m a lot stronger now despite what my mom might think.

I’m not one to get physical. I think the best revenge is simple. Happiness, success. I have a job with coworkers I love. I’m…well…working on getting my life together. She’s nothing to me now. Do I care that she’s a different person now? A little. At least I know she’s no longer treating people the way she treated me. At least the next person to enter her life won’t endure what I did. But that doesn’t mean I want her anywhere near my life. I have friends now that I don’t have to try and make them like me. They poke fun at me for the celebrities I like or the music I listen to but it’s all in good fun. It wasn’t fun with her. It was miserable. And I wish I could tell her all these things so she could live with the misery she caused. But, I have to grow up too. We have to realize that there are just going to be people like that in this world. The world is rough, full of bumpy roads and ways to trip us up. Twists and turns, plenty of ways to get lost. There are going to be people that test us, that try to distract us. But we have to fight back. It’s easier said than done. But as long as you’re alive, you’re winning. As long as you’re trying, you’re winning. And no one can take that away from you.

For more information on bullying, head over to stopbullying.gov

And as always, if you see someone getting picked on, don’t hesitate to stand up for them. It doesn’t matter if it’s people your friends with. Don’t ever play it off as “drama between two friends” LISTEN TO YOUR FRIENDS. Listen to everyone. It may sound silly when your friend asks you to hang out in a different spot at lunchtime. But don’t ignore them. I was ignored. And it’s the worst feeling in the world. Always listen, stand up to bullies when you can. If you can’t, tell someone, tell an adult. You could save someone’s life.

Thanks for reading.

 

When it comes back around…

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I’ve talked about depression before. And as I said in that post, I’ve never actually been officially diagnosed mostly because if what I’m feeling really is officially depression, I don’t think I could handle it as well. In my head, if it’s just speculation, it’s less scary. And there’s also the fact that I’m not sure who to go to for a diagnosis. Do I go to my regular doctor? Or do I have to set up an appointment with a psychologist? Anyways, that’s not the point of this post here today, folks.

In my last post, I said that I was doing a lot better and I was. And silly little me thought that I’d moved past it. It’s over, right? The storm has passed and I can move along as normal, right? As with my best friend, Jennifer’s death, I learned the hard way that I was wrong. And we all know how much I hate to be wrong.

This past week has been rough. I’m not even sure what’s wrong with me to be honest. I’ve been thinking about Jennifer more than usual lately. I’m not really sure why but she’s been weighing heavily on my mind. I don’t know, maybe I’m overwhelmed by work? Maybe being off birth control is resetting my hormones and it’s all out of sorts now? I feel like I need a reason to feel so low but I just don’t have one. And how do you talk to people about it when you have no reasons? How do you tell your coworkers you don’t have the energy to work but you’re not even sure why? But, it’s brought up an interesting point and a flaw I have.

My flaw being that I can’t say no to people. A coworker of mine had a family thing come up suddenly and she left work early yesterday, was given today off by our boss. And guess who the boss asked to come in at 5:00 in the morning on her day off? That’s right, me. And I said yes because it was so heavy and I didn’t have the heart to say no all those things considered. But my other coworker and I talked this morning when I told her I wish I’d said no.

She told me we need to take care of ourselves first. And, despite what my mom may tell you, I hate to let people down, I hate to be seen as unreliable, I hate to be the one to ask for help. I just wanna help other people and it’s caused me to not take care of myself. Unfortunately, I still live at home. And my mom basically put that idea in my head from the time I was a kid. If I dared to call off work because of my mental health, my mom would tear me apart. And so, I don’t take care of myself because I have no other choice. I suffer in silence as usual. The last person I want to admit weakness to is my boss or my coworkers. I can’t even admit my weakness to my parents or my friends.

But, the important thing is to be aware of these flaws. Once you’re aware of them, they’re easier to work on. The key to breaking a cycle is acknowledging that there is one. Now, I won’t be able to break this cycle so easily until I’m out on my own and I can take better care of myself.

And here’s another important thing to remember: we made it.

We pushed through, and we made it through the day. It was hard as fuck but we’re here. And we’re entitled to those small victories, aren’t we? I think we’ve earned the right to pat ourselves on the back and compliment ourselves. We survived another day and we’re ready to take on another. We just have to take it one day at a time. Maybe tomorrow, it’ll be better. Maybe tomorrow our heads will clear. And those are the times you wanna hold onto as tight as you can. Because when the dark times roll in again, we’ll have a reason to keep going, something to look forward to.

I don’t know. Maybe I’m just talking out of my ass again. I’m mostly just babbling, trying to convince myself that everything will be okay. But hopefully, this helps someone out there.

Fertility struggles

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Alright, before I begin, I would just like to say that I’m still not 100% certain that I’m not fertile. However, after my doctor’s appointment today, I’d like to talk about struggles with fertility and how the possibility of being infertile has made me feel recently.

So, my periods were pretty regular and rather heavy from the time I first got it around the age of twelve until I was fifteen or sixteen. Then I only got my period every few months and it was just some spotting. I know, in the perfect world, you’d barely get periods which is what I initially thought. But, after a while it was kind of concerning. I was getting my periods and now I’m not? What?

Of course, doctors offered me no answers. In 2011, I got some bloodwork done to figure out what was going on while also putting me on birth control. For the record, I didn’t get the results of the bloodwork until today. But more on that later.

In my mind, I thought that maybe I’d been on birth control long enough that maybe my period was regular now. But…no. So I went to the doctor today. Something must be wrong, right? I was thinking the worse. PCOS? Cysts on my ovaries? Or maybe I didn’t have any eggs left. I’m only twenty-two but as I said, I was thinking worst case scenario.

So, I went in today and told the doctor everything. She showed me my bloodwork from 2011. All my hormone levels were normal. However, my testosterone levels were a bit high. Normal for a woman looked to be thirty-six or thirty-seven and I was at forty. That seemed odd to me but the doctor didn’t appear to be shocked or really comment on it so I figured that must not be a big deal so I stayed quiet. She gave me a pelvic exam to make sure everything felt alright. She was hesitant to do so since I’ve never had sex and I don’t use tampons. Guys, if you’re feeling uncomfortable right now, I give you my permission to leave and have a good day and I’m not taking it personally.

By the way, her hesitance to give me the pelvic exam was justified because I swear it felt like I was being torn. BUT ANYWAYS, I felt it needed to be done just in case there were any abnormalities she could fell. But as far as the physical part, I’m normal. She didn’t send me to get bloodwork which I wish I’d asked for.

So, she basically tells me that some women don’t ovulate every single month and some women only ovulate every 3-5 months. So, if I ever tried to get pregnant, my window is much smaller than most women but it is possible.

Here is why that answer PISSES ME OFF. Because that’s probably the third time I’ve gotten that answer and it’s just not enough. My main mistake was not going to a gynecologist. I should’ve just done that. I’ve figured out that the “some women don’t ovulate every month” answer is basically their way of saying “I have no fucking clue what’s wrong with you.”

I know this isn’t a huge issue. I’m only twenty-two after all. I’m not even close to having any kids. I don’t have a boyfriend yet for crying out loud. The problem is that I’ve always wanted to be a mother. Ever since I was a little kid, I knew I wanted to be a mother. Hell, I’ve got names picked out. And I never thought this would ever happen to me. It’s extremely frightening. The doctor said if I ever did get pregnant, would I be able to carry the baby to term? When I did get my period, it was spotting. I barely bled at all. Would that affect anything? I don’t know because I was too busy trying to not cry to ask the doctor anything.

Her only solution was for me to simply get back on the birth control pill. However, the depression I was feeling was only intensified by the pill. It could be that the pill was the actual cause of it. I’m not entirely sure but I do know that since I’ve gotten off it, I’ve felt a lot better emotionally and I don’t really want to get back on it if I don’t have to. If I become sexually active, obviously I’m going to get on it. If you can take the pill (I know some people, it makes them physically sick and some people suicidal) then please, please, please take it and use condoms. Protect yourself!

She said to give my body another two or three months to allow my body to reset since I’ve been on the pill for the last six years or so. I don’t want to panic yet. I want to believe that I’ll be alright. But I can’t shake the feeling that the one thing I want in this life will be the one thing I won’t be able to have. When the third month passes and I inevitably don’t start my period, I’ll go to a gynecologist, get some REAL answers instead of another bullshit “You’re normal don’t worry” answer.

So…I suppose this is the part where I give my advice? Well…I wish I had some. I’m still trying to process the idea that having children will be extremely difficult or won’t happen at all. How does one deal with that? I’ll get back to you on that one my friends. I’m still trying to figure that one out myself.

Dealing with Grief Part 2: Our Song

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So, this past weekend I was in Vegas. My mom and step-dad had bought tickets to see Celine Dion live which is a whole other story I’m not gonna get into today. My Vegas trip is another story for another day. However, seeing Celine Dion perform was an extremely emotional experience for me for two reasons. The first being that I’ve wanted to see her live since I was four or five years old and when the curtains parted and she was standing there in her shimmery golden dress, it was like seeing the queen.

But the second reason is the point of this post. Some time ago, I talked about one of my best friends named Jennifer who died of brain cancer back in July of 2015. But before that day, when she was still alive and well, she would send me things all the time saying “this reminds me of us” as friends do. One day, she sent me a link to the song “Because You Loved Me” which is a Celine Dion song I assume most people know. It’s one of her popular songs. She told me it was our song and of course I thought it was so sweet and I did love that song and it did suit us quite well. But, I didn’t realize how much that song reflected how I felt until after Jennifer died. As I’ve said before, Jennifer came into my life during a very dark time and she was the person that pulled me out of it for the most part. I still struggled with it but I had someone who could relate and knew how to help me. One of my biggest regrets was not telling her those things. But, I’m repeating myself. Back to the point.

I was already emotional just from seeing this amazingly talented woman singing her heart out on stage. But then…do you see where I’m going with this? She started “Because You Loved Me” which then transitioned into “It’s All Coming Back To Me” which always makes my heart ache. Basically anything by Celine Dion involving that subject matter will make me cry. My Heart Will Go On, Recovering, etc. etc. I will cry.

My mom had asked me after the show what was the most emotional part of it for me and I couldn’t bring myself to tell her. As I said in my last post, my mom never understood why I mourned Jennifer as much as I did because we never met in person. Over time, I just stopped telling my mom things because it was just easier to suffer in silence than get no response from her. For the record, I love my mom but we are two different people and she’s difficult to talk to sometimes. I still adore my mother. Don’t get it twisted.

Anyways, when I got back to my hotel room and I was alone, I burst into tears. I sobbed with my soul. But they weren’t sad tears. My heart was so full in that moment, almost as if Jennifer was present. They were happy tears. Even though Jennifer isn’t here physically, the two of us shared that moment. I know she was there. I may have felt her presence but I’m not entirely sure. It was a beautiful moment, hearing our song like that. Jennifer was there and she felt it too I think. Knowing her, she was probably crying with me.

I still miss that precious being ever since she drifted from my life. But hearing our song made it feel like she was with me again. And to be honest, I felt a hell of a lot better. It’ll be two years since she died in July and that little two minute moment filled me with such peace that the anniversary of her death might be easier on me than it was last year.

I guess my point is that although the grief will never go away, it is possible to resume your life. Your loved one will make their visits and you’ll feel it. You’ll have that moment where your heart is full and you’re at peace. It took me almost two years to get to that point. But if you’re not there yet, you will one day.

 

My Life As His Sister: Does autism need a cure?

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This question had never really crossed my mind before. But I’ve been thinking about it a lot lately. Does autism need a cure?

It started about four years ago during my dad’s charity event called Metal Jam which raises money for autism. People sign up to play some metal and there’s a raffle and prizes and all the money goes to…well…it used to go to Autism Speaks but after some research we realized we shouldn’t have been donating to them and my dad found another charity to donate the money to. In any case, it brings people together every year and raises thousands of dollars. And my dad brings my brother up on stage to play one of his favorite songs which is always a big tear jerker. Anyways, back in 2013, Derek Riggs (the man who created Iron Maiden’s mascot “Eddie The Head”) designed some shirts for us which were super cool. He had posted a picture of the shirt on his Facebook page and someone had commented basically saying, “Autism doesn’t need a cure. I’m autistic and I don’t need a cure.”

It was either Derek Riggs or his wife that responded very politely telling them that there should still be research, I’m not 100% sure what was said as I didn’t see the post. My mom saw it and told me about it.

But, I kinda forgot about that little event until today when I saw a clip of the debut of the first character with autism on Sesame Street, which was so amazing and so pure and so innocent. I have been waiting my entire life to see acceptance and representation for kids and adults like my brother. Well, my brother is much more severe than the character they introduced BUT autism is different for every person as far as severity goes. And regardless of what severity of autism they gave this character, I absolutely love how they explained it and how they handled it all.

All of a sudden, I see comments like the one that popped up on Derek Riggs’ post on Facebook four years ago. “Autism doesn’t need a cure! I’m autistic and I don’t need a cure!”

And it got me thinking. Are they right? Does autism not need a cure? Do you really want my answer? You might not like it. Because I do think it does.

I understand why people with high functioning autism would say it, I really do. I struggled so much when I was young seeing the looks on people’s faces when they saw my brother and saw how he behaved. It’s hard living with the judgement I get that, I truly do. But like I said, every person with autism is different when it comes to severity.

So, you don’t get the cure, that’s fine. But what about the kids like my brother? They do exist. My brother isn’t potty trained, he can’t speak, he’s self abusive, we’re currently struggling to find the right mixture of medications to give him in a very, very sad attempt to calm him down and make him less angry. My brother goes to an adult program with other men and women who are just like him. What about them? You don’t need a cure so they don’t need one either?

Yes, they need acceptance. Yes, they need compassion and understanding. But they also need a cure. If you don’t want it, that’s fine. You don’t have to take it if one ever came up. But if I had the chance to give my brother a better life, I’d do it in a heartbeat. His quality of life is so poor. He’ll never drive a car, have a career, fall in love, have children, nothing. If I had the opportunity to give him those things, I would. If that meant curing him, hell yeah I’d give that to him. And no one is allowed to tell me I’m ignorant for it.

So, there’s my answer. Yes, we need a cure for autism because not every autistic kid is high functioning. Some kids are severe like my brother and their quality of life will never be as good. Those kids need a cure, don’t they? A fighting chance? Hell, you might be in luck. I doubt we’ll see the cure for autism in our lifetime.

I don’t intend to offend anyone. I just think that it’s just not that simple. There are so many levels of severity and some kids are so severe that would it be fair to deprive them of a cure when it would certainly improve their quality of life?

What do you guys think?

My life as his sister: the early years

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I know what you’re gonna say. Most of the world says it. An autistic person’s perspective is more important than the sibling or parent. I get it. Unfortunately, my brother can’t talk so my perspective is as good as we’re gonna get. Besides, I think my perspective is important too.

My brother was born in July of 1992. Back then (according to my mom) people didn’t really know a lot about autism. My mom said when she thought of autism, she thought of Rain Man. But from the moment my brother was born, my mom knew something was off. He wasn’t developing as babies normally do. And yeah, every baby is different. But it was a noticeable difference.

My parents went to so many doctors trying to figure out what was going on with him. One doctor finally told them that my brother had autism. They gave my parents all the information they would need (which is A LOT by the way)

I don’t really remember when or if my parents actually explained to me what autism was or why my brother was different. In all honesty, he was never different to me. This was all I knew. This was what I was born into. I probably never even questioned it. But, when I was little, I used to suspect that my brother was faking it. Well, that was probably more what I hoped than what I believed. My brother is severely autistic. He can’t speak, he can’t even use a toilet. He’s basically a one year old in a twenty-four year old’s body…if that one year old was self abusive. He hits himself, he scratches himself, he opens up his forehead so he’s left bloody all the time. Sometimes, his meltdowns get so bad, the air is thick with the smell of his blood and he would get blood spatter on his walls and it dried under his fingernails.

Life when I was young was exhausting. And I don’t mean that my brother was a burden in any way because he wasn’t as severe as he is now. It was exhausting because it felt like my brother had such a small group backing him. It was just me, my parents, and my step-dad. It felt like the entire world shunned him and was disgusted by him and I felt like he needed to always be protected. We didn’t go to the same school when we were little but the kids at my school still made fun of him because of the few times they’d seen him. And I was furious. Every joke I took seriously, every insult I took to heart. My brother didn’t know he was being insulted so I took all the pain for him. And it’s a lot to take in sometimes. People used to avoid him like the plague. They’d see him rock back and forth and make his noises and people would swerve in such an obvious way to get away from him. And I took that all in.

Funny enough, my best friend of almost eleven years went to his elementary school. She didn’t remember him but still a small world though, right?

Despite all that, things were actually better for him. He was still so happy, so pure. It must’ve been nice to not give two shits about what people said about him or if people made fun of him. He was always smiling, always with his headphones in listening to his music. His favorite at the time was Witchfinder General (believe me, you’re not the only one who has no idea who that band is) which according to my dad was the only band that could ever calm my brother down.

There was such love in my brother’s eyes, the perfect combination of our mom’s green eyes and our dad’s brown eyes. They were so bright and wide and he had freckles across his nose. And sometimes it seemed like he was trying to understand. He looked at you like he was listening. He looked like a normal little boy. But those things are gone now.

The brightness in his eyes is gone. I rarely see my brother smile anymore. The freckles have faded and are replaced by scars, scratches, and open wounds. He’s so disconnected now, barely ever looking up from his CD player. It’s almost like he lost hope or he gave up. Or maybe it’s all his medication that he takes for his rage that by the way, doesn’t work. And why did I suddenly think of this? Why am I deciding to talk about my brother? I don’t know, maybe because it’s autism awareness day today and also autism awareness month. Or maybe it’s because his medication is working so badly right now that his meltdowns have been absolutely horrendous lately and it reminds me of when times were better. Regardless, I feel that my brother’s story should be heard, as well as every other kid like him. And since he can’t speak, I’m gonna have to tell it for him if you all don’t mind.