Believe it or not, I’ve never played any of the Fallout games. I’ve watched other people play Fallout 3 & New Vegas, but I could never quite get a handle on the controls myself. I blame my fickle teenage patience. As it is, I haven’t pre-ordered Fallout 4, nor do I plan to play it in the immediate future. But, I absolutely want to get into the series from the beginning. The story is totally up my alley & I adore the soundtrack. 

Personally, I’m 99.9% against that particular organization. I don’t support how little money they actually use to fund family services (they actually spend more on advertising), and the fact that there isn’t a single person with autism on their board blows my mind. I also feel that Autism Speaks does less to spread awareness, and more to monger fear and perpetuate this stigma that identifying with any part of the spectrum somehow makes you a lesser person. They do a poor job of creating a sense of unity & community, which I think is a crucial element of any successful charity. I’m a much bigger fan of Autism Society of America, and would recommend donating to them if you feel so inclined. 

However, I do support the goals of the research that Autism Speaks happens to fund. I know the word ‘cure’ is offensive to a lot of people on the spectrum, just as the descriptions ‘low-functioning’ and ‘high-functioning’ are (though I still don’t understand why), but consider this:

My brother is 20 years old. He’s 6′1, just over 200 pounds, and won’t let us cut his hair because he 1. won’t sit still long enough and 2. can’t stand the sensation of scissors against his skin. He won’t sit through a dentist appointment without trying to chew somebody’s finger off. He’s not 100% toilet trained yet. He’s still trying to grasp how to shower on his own. He overeats compulsively, and won’t touch most things unless they’re fried. We can’t seem to curb his diet because he has an infant’s understanding of discipline and gratification. He has zero understanding of social cues. More, He is completely non-verbal, and communicates with my family through a dozen gibberish words that we’ve learned to understand over the years. He can repeat certain words, but can’t pronounce things with f’s, g’s,  l’s,  m’s, and u’s for whatever reason. There are times where it’s very clear that he’s trying to say something, but nothing except inarticulate noise comes out. His frustration is palpable in the way he grabs his face, flaps his arms, and most commonly, bites himself. He has a thick, golf-ball sized callous on his arm from two decades of this. We suspect he has nerve damage, too, but we can’t confirm ‘cause we (obviously) can’t ask him what he can and can’t feel. 

In times of immense frustration, my brother will actually lash out and claw/bite the person nearest to him. I’ve been bitten about fifteen times, and let me tell you, it hurts. These aren’t play bites, folks–this is somebody trying to bite through your skin like it’s a piece of overcooked steak & they’re outraged about having to pay full price for it. He’s bitten my mom in the face, twice. He once dug his nails so hard into my face that I had to wear bandages on both cheeks for three days. He usually apologizes by putting his face in his hands and rocking, and when he calms down, he’s just as upset as the victim. It’s more heartbreaking than it is physically painful. It’s also a huge cause of stress when we’re out in public. He’s lashed out children and elderly people alike, and usually at random.  It was awful when he was a kid, but can you imagine an adult his size coming after you in a loud rage with his teeth bared? I can, and vividly. It’s a reality my family faces at least once a week.

To elaborate, my brother tantrums–sometimes violently–when he’s upset. When I say ‘violently’, I mean biting himself, screaming, throwing himself into furniture, lunging for people, etc.  These fits have become more frequent over the last three or so years, and my family assumes they’re triggered by physical discomfort. We can only guess, of course, but the tantrums come in tandem with frequent trips to the bathroom, or in loud, crowded environments that upset his sensory sensitivities. The clothes he’s wearing–specifically tightness or tags–will sometime exacerbate things. The worst part is that you can’t go near him when he’s like this, or he will hurt you. You can’t comfort him physically, and you can’t talk him down because he doesn’t understand. All I’m able to do is lock my bedroom door and ride it out in hiding. I forgot to lock it once while he was whining next door, and he burst in screaming and chased me around my bedroom. I’d been on a skype call at the time, and my loud talking had set him off. My father came to my rescue before he could hurt me or himself, but it was the single most terrifying moment I’ve had with him to date–including the four times he’s escaped our house & gone missing for hours. As you might suspect, the local police know him by name, and know that if he’s ever spotted alone in public, he needs to be returned home. We have a locked gate around our house, as well as doors that lock from the inside, to help with this kind of thing. It’s not that we want him to a be prisoner in his own home, but if he goes out unattended, he doesn’t understand basic concepts like looking both ways before crossing the street.

I could go on and on and on about the struggles my brother & family face on a day to day basis. I could explain in detail the phases he’s gone through over the years–tearing up paper and littering the house with it, smearing his own fecal matter on the walls, taking my makeup and crushing it into my carpet, dumping out entire bottles of conditioner and spreading it over the bathroom floor–but you get the point. I could tally the number of health problems he has on top of his autism–OCD, IBS, other gastrointestinal issues, allergies that have hospitalized him–that plague while he’s trapped in his own head. I don’t even know where to begin with what his condition has done to my family. Depression and anxiety go without saying. My parents’ marriage has been put under tremendous strain time and time again. My brother’s autism is just as much a financial burden as it is a physical and emotional oneWe’ve been alienated by our extended family out of ignorance, and have spent way too many holidays at home because our own relatives don’t want to deal with our reality in their own homes. We haven’t gone on a family vacation in twelve years, either, nor do we often get to go anywhere as a complete family since someone always has to be home with him. 

But, all of that pales in comparison to our fears about his future.

My brother’s already on a waiting list for a group home. In an ideal world, we’d keep him home with us forever, but it’s just not possible. My parents are getting older, and are already having difficulty caring for him when he gets out of control. Hell, my mom & I are afraid of him at his worst, especially now that my 88 year old grandmother is living with us. Our main concern revolves around him being able to communicate in whatever home. If he’s being abused or neglected, he literally has no way to tell us. Our only option is to be able to visit him every single day to keep an eye on things, meaning we have to be ready to move as soon as a spot is available for him anywhere. As bad as I feel for my brother, it kills me to think of how much my parents have sacrificed up to this point, only to have to sacrifice more even after he’s out of their charge. Their life is as bound to autism as my brother’s. I am the only person in this family with a chance at my own future. I can’t fully express guilt that comes with that. 

Autism Speaks devotes all of its research funding to finding a ‘cure’. While I understand & respect that many people on the spectrum don’t want or need one, my brother really, really does. I beseech people to remember that autism is a spectrum, and people on my brother’s end don’t have the luxury of being proud or strong. All I want is for my brother to be happy & healthy. I want him to be able to speak for himself & understand the world around him to his fullest potential. I want my family to experience the normalcy most everyone around me takes for granted.

Send me your name and I’ll make you a mini playlist that start with those letters.

Ladytron--The Venus In Furs [x]

Arsonist’s Lullaby--Hozier [x]

Underwater--Mika [x]

Reapers--Muse [x]

Send me your name and I’ll make you a mini playlist that start with those letters.

Under The Water--The Pretty Reckless [x]

Ritz--Shiny Toy Guns [x]

I Love You Because--Elvis Presley [x]

Send me your name and I’ll make you a mini playlist that start with those letters.

Jumpin’ Jive–Cab Calloway [x]

Overdue–Muse [x]

Happy–Mother Mother [x]

Nellie The Elephant–Toy Dolls [x]

Not Fair–Lily Allen [x]