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.