He isn't a secret, but he isn't known either.
I meet and talk to a lot of people each year, and I form friendships or close acquaintanceships with a handful of them. However, there are a lot of people who know me who don't know I have a brother, and to press the subject further, many don't know he's autistic. I don't talk about him much or at all, but it's not because I'm trying to hide his existence. It's quite the opposite, really; I'm unconcerned with who knows about him. Instead, I lack a real relationship with him – he is not active in my day-to-day life, so there's not much to tell. I should explain the relationship I do have with him, but in order to do that, I'll need to go over my sordid history. Please approach this with an open heart because I am not proud about a lot of what you'll read.
My brother is the only reason I live in the United States of America. If he didn't exist, I would be in Israel. I'd have served in the Israeli military and finished college there. Of course, I'm theorizing. Any number of factors could have resulted in a direly different history for myself, but one fact remains true: We moved to the US for my brother in 1983. That move did not come lightly either. My parents were well-established in Israel, having lived there since the mid-60s, and all their friends and family lived there. Actually, all of our family still lives there. My parents, my brother, and I are the only ones in this country. Back when we moved, services for autistic children were not as good in Israel as they were in the US. I cannot attest to the disparity, but it is why my parents sought out schooling for him here in New Jersey at the Douglass Developmental Disabilities Center.
So we moved, settled, and began new lives. My life was already rather new – I was not yet a year old when we moved – so as far as I'm concerned, I've only ever been American with the exception of some household traditions. Eventually, I developed a conscious level with which to interact with people, including my brother. I cannot say I honestly understood what autism was, but I did know my brother was different, limited. That was the kind of thing that was obvious. He has Fragile X Syndrome, and the severity of it is high enough that it is immediately apparent that he's autistic, though he lacks the physical features you might recognize in Down Syndrome. It's not the same as your friend's cousin with Asperger's, who "seemed normal" until something appeared a little off. He didn't "grow out of it" or get better like Jenny McCarthy's child.
When it came to playing with my brother, I did so for a few years without major issue. We had figurines and Milton Bradley games that we would play together. I remember that we had two memory games, one blue and one green, which involved placing pictorial cards face down and trying to match pairs. (You had to have played a variation of this.) For a really young kid of four or five, this game is pretty engaging. My brother, of course, was seven or eight. Despite being aware of his autism, mostly because of behavior that I'll get to in a bit, it did not occur to me that we might mentally diverge from each other. Rather, I did not posit that he had stopped moving on the intellectual path I was just starting.
With my ever-growing interests, we played together less and less. What we did share was television. A lot of children's television is engaging to broad ranges of ages, after all. While I still had a vested interest in PBS and Nickelodeon programming, we'd watch that together. I remember that he really loved Where in the World Is Carmen Sandiego? But when I say that we watched the shows together, I mean we were two people in the same room watching the same program at the same time. We were not really interacting or talking. Well, we were, and that is where this story gets sad for me but mostly for my brother.
I would goad him continually. If you know a severely autistic person, then you might be familiar with how they handle being confused or agitated. Like many others, my brother is self-abusive and easily agitated. Like a little child, it does not take a lot to set him off. You may have seen the newest Tumblr sensation, Reasons My Son Is Crying, which brings a humorous photo-journalistic focus to the very random reasons toddlers will cry. Imagine that if instead of crying, he got really angry and hit himself with one or both of his hands. That is my brother and many autistic people – I can't even say it's just children because this behavior lasts for life and often gets worse as the person grows stronger. It is only in the last few years that I've come to understand it for what it is. My brother is not so much angry at someone or something. You can see it on his face. He's angry that he can't understand whatever has triggered him, and he is forced to relive that anger over and over as mentally capable people guide him for reasons he doesn't understand.
I was a terrible brother. The more aware I was of our differences, the more I would do things to push him over that edge. Why? I wanted him to just once respond like a normal brother. That is probably the most disgusting, reprehensible, and vile use of the word, "normal," I can think of. It carries with it such loaded projections of how a person should be while ignoring what a person isn't or can't be. But that's what it was, and it took me years to gain enough perspective to understand what I was doing. I would tell him he wouldn't be going to school, his favorite place, the next day, or I would tell him to go to his room for no reason.
Seriously, imagine that someone is threatening your right to control your life for no reason at all. You already wouldn't understand why, but you at least have the privilege of coming up with reasons a person could do it even if they are all unjust. My brother can't. He can't tell if I'm lying or just being mean, if there is a good reason to tell him these things, or if he's mishearing. What he can tell is he's being told something he doesn't want to hear, and lacking justification or rationale, he's angry about it.
Of course, this didn't happen minute after minute or day after day, per se, but it happened often enough that I can tell you that I was a terrible brother. Now, I tell you I never did anything that would directly harm him (hitting himself being indirect harm) or put his life in danger. I've pulled him away from walking blindly into the street, and I would do my best to make sure he did not try to lick the sharp end of a knife. But that doesn't make what I did do better. And my parents were not blind to it, either. I was punished many times when they caught me, the worst being for randomly pantsing him at a public lake. I tried to pass it off as an accident, stating I tripped and grabbed his bathing suit.
There is more to my side, which doesn't justify my actions at all, but shows how a child can be bullied into bullying. School for me was a lot of torture. It was never violent, thank goodness, but I was ridiculed on a daily basis. I didn't play sports or do anything cool, and I was really smart with a straight-A transcript until high school. This invited constant teasing that only got progressively worse when the other boys' hormones kicked in well before mine, and I didn't show an affinity for girls. Although I did grow up to be gay (or always was), at the time I was being teased, I wasn't really attracted to anyone, guys or girls. But like the usual non sequitur of "not one so the other," because I didn't like girls, I had to like guys, and that just wouldn't fly.
I hated the other kids, and I hated myself for being uncompromisingly different in every wrong way possible. In an abuse begetting abuse situation, I turned my attention to one who was weaker than I was, my brother. Again, this is not a justification. I could have been a better person at any point and chose not to project my anger against someone completely innocent just like the kids who teased me could have done. But I wasn't, and I didn't. If there's anything I can be thankful for is that I was not sociopathic enough to directly physically abuse my brother like he was an animal or an object. What I did was bad enough, though, and there are no excuses for it.
The only person I can and should apologize to is not really capable of processing my apology into forgiveness. He doesn't treat me like I did anything at all, though. It's almost worse because I suffered no consequence. When I entered high school, which was in a different town with different students, I was bullied less. I also bullied my brother less. I wrote those sentences separately and without a conjunction because I don't want to definitively relate the two. What I do remember for sure is that I was just tired of bullying, and my brother was not going to react like big brothers on TV. I mean, without having another older brother and with all the older brothers of my family living far away, what other root for what I expected my older brother to be could there be but TV? In that, media is dangerous; it will convince you that you and your life are not normal. I fell for it. My brother is not a very special episode. He's not done with autism after thirty minutes and a small PSA.
Both before and after I stopped bullying him, we kept to ourselves when we were not interacting poorly. I was really invested in TV and eventually had my own to watch without him, and he still had those figurines and memory games. When I got into music in 1995 (yes, there was a specific year I decided to acknowledge music), I started watching a lot of MTV and VH1. My first musical love and first CD was Alanis Morissette. What with music being plainly audible, when I would watch on a shared set, my brother eventually came to watch with me because it caught his attention. He also liked Alanis, which I was happy about. Celine Dion, who I hated as a singer, was also becoming popular, and my brother latched onto her music like a baby to its mother. Music was a thing we eventually shared again even if we had different tastes. I value that because we actually were into it together for a while, and I was civil.
In the year 2000, I graduated high school, and my brother was officially too old for public schooling for autistic people. That is a tragedy in and of itself, by the way, because many autistic people love it; it keeps them engaged and interested all day compared to coming home and having little to do. If you think about it, if you're always five years-old, you always want to go to kindergarten and see your favorite teacher and your friends. That was school for my brother. But I digress. In that final year, we found a group home for him to stay in, which is where he has lived since for thirteen years.
My parents bring him home to spend the day on Sundays, taking him back after dinner. If there's a holiday, they'll bring him for a few days, and they'll change up the schedule as they see fit. So despite everything else I was doing, while I lived at home and for a while after, I made an effort to eat dinner with my entire family. Although my brother and I kept to ourselves otherwise, I tried to make sure there was this time for us to share even if it was sitting across from each other at a table and eating quietly. I live more prohibitively far now, so I come on a few less Sundays, and someday, I may move too far to come that often at all.
But I love my brother. I do. And I regret all the terrible things I did to him when I was younger. Mentally, I'm completely flagellant about it. Every now and again, my mother will recount something, and she'll ask me, "Why did you do that?" I never answer. Her being angry with me for that handful of seconds is quite gracious compared to what I probably deserve. Regardless, now you know I have an older, autistic brother.
More importantly, I hope you have a little more insight into what a large portion of our population has to deal with: people like me before I grew up. There are people who think "retarded" and "stupid" are the same thing. They're not. Although "stupid" is generally pejorative, "retarded" really means something. "Retarded" is not corny like music, a game, or a party. It means a person who wants to understand but can't. It means a person who hurts himself because he's angry he can't understand. It means a person who cannot even entertain a what-if scenario for being mentally able to understand.
It is a person who can't defend himself from you, from me, from ignorant people, from legislators who treat him like he's diseased or unworthy, from "professionals" who don't feel obligated to treat people equally, from people who stare and judge, from people who vote that they don't want a group home in their neighborhood, from parents who leave their autistic children with hospitals or homes never to see them again, from parents who don't get their children evaluated for fear of embarrassment or responsibility, from monsters who physically and sexually abuse the silent who can't articulate what's being done to them, and also from themselves.
We must protect them, the bare minimum being changing our understanding. You'll be surprised at how much you don't know once you begin to dig. One good resource for information and outreach is Autism Society. They are better than me. I wrote all this based solely on my learning from life, but those sites can help you get to studies and other people who can properly educate.
Thank you for reading.
Edit: Please also check out Supersiblings.org for more insight into the family dynamic.
Update 4/2/2015: Removed some ableist language and links to a problematic info source. I would also like to note that despite the differentiation I argue between "retarded" and "stupid," words that insult intelligence can also be ableist and often classist. Think of why you use them if ever.
For reasons that should be clear, I did not write my brother's name in this blog. This is to protect him and the residents of his group home.
Edit: Please also check out Supersiblings.org for more insight into the family dynamic.
Update 4/2/2015: Removed some ableist language and links to a problematic info source. I would also like to note that despite the differentiation I argue between "retarded" and "stupid," words that insult intelligence can also be ableist and often classist. Think of why you use them if ever.
For reasons that should be clear, I did not write my brother's name in this blog. This is to protect him and the residents of his group home.
This is a very raw and beautiful reflection, even though it is rooted in the painful challenge your family has faced. Thank you for sharing!
ReplyDeleteFrom a language perspective, you bring up the popular connotation of the word retarded to indicate not merely an inability to function on a higher cognitive level, but something (someone) to be ridiculed or avoided. What is so ironic, then, is that you refer to the word 'lame' which falls in the same family of terms that denote impairment (someone with limited mobility, perhaps having a limp or missing a limb), a condition which can just as easily result from a birth defect, prolonged fight with a disease, or random accident. This goes for 'dumb' as well (unable to speak, mute). Likewise, the no-less appalling use of the word 'gay' to qualify an object or idea that is to be avoided as 'unacceptable', 'unpleasant', or just 'not trendy'.
Trying to avoid insensitive slang by coining new terms or concepts is merely sidestepping the issue. I have already heard people refer to others as 'autistic' when there is something odd or presumably 'defective' about the other person. Likewise, whether I refer to a person as 'disabled' or 'differently abled' does not guarantee I demonstrate the minimum degree of compassion and awareness that our society demands (or seems to). In most situations the difference persists, and that is the heart of the matter. Difference, while in some cases meaning a limited set of potential outcomes as in your brother's case, must not signal an inherent status as less-than-human - as you have so eloquently stated in your final thoughts.
Sadly, though, I see an ever-growing self-obsession in American society. My chief sample set, of course, are students, who are seemingly good-hearted and sensitive but have a difficult time projecting themselves beyond their own feelings and reactions as they have been conditioned to understand them. I certainly hope that my pessimistic outlook is wrong.
Incredible Gil.
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