My Story:
Growing up with a Sister on the Spectrum
Growing up, I never really realized my sister was autistic. I mean, I knew she had autism - I couldn't not, with so many events in our lives that centered around autism. But I never internalized that knowledge to the extent most people would think.
I knew when I was in elementary school a lady came to the house to do things with her because Caley needed help. And I knew she got diagnosed with Asperger's at some point around when I was 11. I sat there with my mom and watched video tapes about autism. And I went to my sister's physical and occupational therapy appointments all the time growing up. But my perspective of all of those events is far different than that of the adults around me.
You see, I didn't see the woman that came to the house as a therapist. I saw her as that strange lady who wouldn't play with me, but played a lot with my sister. And I don't remember the doctor's appointment where the psychiatrist told my mom that she was a refrigerator mother who had caused Caley's autism because she "didn't show my sister enough love" (nothing could be further from the truth). Instead, I remember going to a Panera Bread restaurant for the first time afterwards, and how much fun that was. And while I did watch the videos about autism with my mom, I don't remember what they said. I just remember the video being really clinical and my mom sitting rigidly in front of the television screen, every fiber of her being focused on absorbing what the tape was saying. Even the therapy I didn't really think of as being about Caley's autism. I just thought it was a really great place where I got to hang out with my newfound friend Courtney (who was receiving therapy herself), twins named Charlie and Valerie who wore strange boots (which turned out to be plastic leg braces), and a girl named Autumn who also had autism.
Not only was my perspective of autism-related events in my sister's life different, but so, too, was my perspective of my sister herself. I always assumed my sister was just a normal kid, like me, and instances where she displayed autistic traits I just thought of as "Caley being Caley." I think this helped me see her clearly for who she was, rather than for what other people told me she was. Yes, she's autistic, but people took that to mean a whole host of other things. They told my parents over and over for years that she would never live alone, should never have children, was good at math and science but not other subjects (which people continued to say well after it became evident that's not the case, presumably because autistic people are supposed to be savants when it comes to math/science [a myth]), and all sorts of other things.
Since I was young I wasn't subjected to this constant narrative perspective of my sister from society and was left to draw my own conclusions based on what my sister was actually like. I remember when my sister was having trouble reading, I confidently assured my parents, telling them, "Don't worry! She's just a late bloomer, like me!" (I was right.) I would continue to do that throughout my whole life, reassuring my parents not to listen to other people, because Caley was more than capable of doing every single thing people said she couldn't. (And she was.)
That is not to say my relationship with my sister was perfect. We were definitely siblings, with traditional sibling squabbles. I, being the eldest, always got the best roles in whatever game we played and shamelessly bossed her around. For some reason, she still looked up to me despite that, and it annoyed me when she copied everything I did. She followed me everywhere! I remember running into a bedroom and locking the door to get some alone time (and Caley picking the lock). I also got my one and only bus referral when we were riding home and I kept swapping seats while the bus was moving. I was trying to get away from her, but she just kept following me!
The only thing that really got on my nerves, though, was when we were treated unequally. Caley could always get away with a lot more than I could, avoiding punishments and getting privileges earlier than I had. Also, as I mentioned previously, it really bothered me when Caley would get loads of attention from therapists and I was completely ignored (which the PTs and OTs did a great job of navigating and I give them credit for). That said, to this day my mother bemoans not having been able to give me enough attention because she was so focused on Caley. Try as I might, though, I don't remember that at all because I honestly don't think I noticed a difference. (So mothers, don't feel so guilty because your kid might have no idea what you're worrying about!)
Being Caley's big sister also thrust me into a very different role. For one thing, grown ups (especially our bus drivers and camp counselors) treated me like I was a lot older than I was, which I think contributed to me maturing very quickly. They asked me to control my sister's behaviors all the time - to the point where my favorite phrase when I was younger was "I don't have a remote control for her!" (At the time I thought myself very witty.)
In many ways, though, this different role was good for me. You see, before my sister came along, I was the weird kid who got bullied on the bus. With Caley's arrival, instead of being the bullied kid I became the protector (or at least, I certainly felt like one, although my success in that role was dubious). Such an upgrade in status will do wonder's for any kid's self-esteem, mine included.
Moreover, because Caley had the label of being 'disabled' I had praise heaped onto me from grown ups just for being a decent sister to her. Once when I was seven I wrote in my diary that sometimes I wished I didn't have a sister, and felt like a giant rebel for having written that because people made such a big deal out of what a good sister I was.* No matter what I was doing with her, as long as I was treating her at least neutrally adults lauded me for being "such a good big sister" (knowing disability narratives, I'm sure I was called a hero or moved people to tears more than once**). While it struck me as odd, because I really and truly wasn't doing anything special, the praise made me feel good and was definitely positive reinforcement towards the end of treating my sister well.
I think growing up as I did with my sister really influenced what type of person I've become, for the better. Growing up, I don't think I saw disability the same way other people did because of my experience playing with kids at physical therapy. I was quick to stick up for kids who were bullied, too, and never became a bully myself thanks in part to my experiences with my sister. I'm extremely maternal, which I think can also be credited to growing up with Caley, and I see the world in a different light because of her. I'm quicker to stand up for people being discriminated against (and quicker to notice discrimination), too, just because I've witnessed so much of it in my life. And I've learned to ignore people who think she's weird, or our relationship is weird***, because we have an amazingly close relationship that they would probably love to have with their own siblings, and if they got to know my sister they'd learn that she's a really awesome person. I'm not close with her out of pity - I'm close because she's a great person and I wish other people could see that.
Neither of us should move anyone to tears with our relationship, nor is our relationship anything extraordinary. It's just the result of two sisters who love each other. Our sibling relationship, like that of many siblings, has only grown closer as the years have passed, and I know that as long as I live, I will have a best friend in Caley, and she in me. I am truly blessed to have her for a sister.
*I didn't really wish I didn't have a sister, just wanted to be rebellious.
**When my mom read this, she confirmed that people did in fact call me a hero and cried about the fact that I was nice to my sister.
***It makes Caley feel safe to hold my hand and hug me when we're out in public, but because of all the hugging and closeness we've been mistaken for a lesbian couple before by strangers, earning us lots of glares and even a wad of spit in one instance.
I knew when I was in elementary school a lady came to the house to do things with her because Caley needed help. And I knew she got diagnosed with Asperger's at some point around when I was 11. I sat there with my mom and watched video tapes about autism. And I went to my sister's physical and occupational therapy appointments all the time growing up. But my perspective of all of those events is far different than that of the adults around me.
You see, I didn't see the woman that came to the house as a therapist. I saw her as that strange lady who wouldn't play with me, but played a lot with my sister. And I don't remember the doctor's appointment where the psychiatrist told my mom that she was a refrigerator mother who had caused Caley's autism because she "didn't show my sister enough love" (nothing could be further from the truth). Instead, I remember going to a Panera Bread restaurant for the first time afterwards, and how much fun that was. And while I did watch the videos about autism with my mom, I don't remember what they said. I just remember the video being really clinical and my mom sitting rigidly in front of the television screen, every fiber of her being focused on absorbing what the tape was saying. Even the therapy I didn't really think of as being about Caley's autism. I just thought it was a really great place where I got to hang out with my newfound friend Courtney (who was receiving therapy herself), twins named Charlie and Valerie who wore strange boots (which turned out to be plastic leg braces), and a girl named Autumn who also had autism.
Not only was my perspective of autism-related events in my sister's life different, but so, too, was my perspective of my sister herself. I always assumed my sister was just a normal kid, like me, and instances where she displayed autistic traits I just thought of as "Caley being Caley." I think this helped me see her clearly for who she was, rather than for what other people told me she was. Yes, she's autistic, but people took that to mean a whole host of other things. They told my parents over and over for years that she would never live alone, should never have children, was good at math and science but not other subjects (which people continued to say well after it became evident that's not the case, presumably because autistic people are supposed to be savants when it comes to math/science [a myth]), and all sorts of other things.
Since I was young I wasn't subjected to this constant narrative perspective of my sister from society and was left to draw my own conclusions based on what my sister was actually like. I remember when my sister was having trouble reading, I confidently assured my parents, telling them, "Don't worry! She's just a late bloomer, like me!" (I was right.) I would continue to do that throughout my whole life, reassuring my parents not to listen to other people, because Caley was more than capable of doing every single thing people said she couldn't. (And she was.)
That is not to say my relationship with my sister was perfect. We were definitely siblings, with traditional sibling squabbles. I, being the eldest, always got the best roles in whatever game we played and shamelessly bossed her around. For some reason, she still looked up to me despite that, and it annoyed me when she copied everything I did. She followed me everywhere! I remember running into a bedroom and locking the door to get some alone time (and Caley picking the lock). I also got my one and only bus referral when we were riding home and I kept swapping seats while the bus was moving. I was trying to get away from her, but she just kept following me!
The only thing that really got on my nerves, though, was when we were treated unequally. Caley could always get away with a lot more than I could, avoiding punishments and getting privileges earlier than I had. Also, as I mentioned previously, it really bothered me when Caley would get loads of attention from therapists and I was completely ignored (which the PTs and OTs did a great job of navigating and I give them credit for). That said, to this day my mother bemoans not having been able to give me enough attention because she was so focused on Caley. Try as I might, though, I don't remember that at all because I honestly don't think I noticed a difference. (So mothers, don't feel so guilty because your kid might have no idea what you're worrying about!)
Being Caley's big sister also thrust me into a very different role. For one thing, grown ups (especially our bus drivers and camp counselors) treated me like I was a lot older than I was, which I think contributed to me maturing very quickly. They asked me to control my sister's behaviors all the time - to the point where my favorite phrase when I was younger was "I don't have a remote control for her!" (At the time I thought myself very witty.)
In many ways, though, this different role was good for me. You see, before my sister came along, I was the weird kid who got bullied on the bus. With Caley's arrival, instead of being the bullied kid I became the protector (or at least, I certainly felt like one, although my success in that role was dubious). Such an upgrade in status will do wonder's for any kid's self-esteem, mine included.
Moreover, because Caley had the label of being 'disabled' I had praise heaped onto me from grown ups just for being a decent sister to her. Once when I was seven I wrote in my diary that sometimes I wished I didn't have a sister, and felt like a giant rebel for having written that because people made such a big deal out of what a good sister I was.* No matter what I was doing with her, as long as I was treating her at least neutrally adults lauded me for being "such a good big sister" (knowing disability narratives, I'm sure I was called a hero or moved people to tears more than once**). While it struck me as odd, because I really and truly wasn't doing anything special, the praise made me feel good and was definitely positive reinforcement towards the end of treating my sister well.
I think growing up as I did with my sister really influenced what type of person I've become, for the better. Growing up, I don't think I saw disability the same way other people did because of my experience playing with kids at physical therapy. I was quick to stick up for kids who were bullied, too, and never became a bully myself thanks in part to my experiences with my sister. I'm extremely maternal, which I think can also be credited to growing up with Caley, and I see the world in a different light because of her. I'm quicker to stand up for people being discriminated against (and quicker to notice discrimination), too, just because I've witnessed so much of it in my life. And I've learned to ignore people who think she's weird, or our relationship is weird***, because we have an amazingly close relationship that they would probably love to have with their own siblings, and if they got to know my sister they'd learn that she's a really awesome person. I'm not close with her out of pity - I'm close because she's a great person and I wish other people could see that.
Neither of us should move anyone to tears with our relationship, nor is our relationship anything extraordinary. It's just the result of two sisters who love each other. Our sibling relationship, like that of many siblings, has only grown closer as the years have passed, and I know that as long as I live, I will have a best friend in Caley, and she in me. I am truly blessed to have her for a sister.
*I didn't really wish I didn't have a sister, just wanted to be rebellious.
**When my mom read this, she confirmed that people did in fact call me a hero and cried about the fact that I was nice to my sister.
***It makes Caley feel safe to hold my hand and hug me when we're out in public, but because of all the hugging and closeness we've been mistaken for a lesbian couple before by strangers, earning us lots of glares and even a wad of spit in one instance.