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 said Caley was autistic. Instead, I remember going to a Panera Bread restaurant for the first time afterwards, and how much fun that was. 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 new-found friends who were all in therapy for disabilities themselves, but who I just saw ass great buddies.
I always assumed my sister was just a normal kid, like me, and times where she showed 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 lot 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 (it's actually the opposite), and all sorts of other things - just because they thought that's what autistic people were like (they aren't), instead of seeing what Caley herself like.
Since I was young, I 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 told my parents, "Don't worry! She's just a late bloomer, like me!" (I was right.) I would continue to do that throughout my whole life, telling my parents not to listen to other people, because Caley was more than capable of achieving most things 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 arguments. I, being the eldest, always got the best roles in whatever game we played and, looking back, I definitely bossed her around. For some reason, she still looked up to me, 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 (and got sent to the principal's office!) 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. A lot of that was just because she was younger than me, and younger siblings are treated differently from older siblings. It's not fair, but it's not related to autism. More than that, Caley needed different rules than I had, because she had different challenges than I did. Now that I'm older I understand, but at the time I thought it was really unfair.
Being Caley's big sister also made people treat me differently. 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 made me grow up even more 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!"
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. Such an improvement in the way people see you (and the way you see yourself) will do make any kid feel good, me included.
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 Caley. Basically, thanks to her I see the world differently. I'm quicker to stand up for people being treated badly, too, just because I've seen that happen to Caley so much.
And I've learned to ignore people who think she's weird, or our relationship is weird, because we have an amazingly close friendship 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.
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 will always have the same in me. I am really lucky to have her for a sister.
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 said Caley was autistic. Instead, I remember going to a Panera Bread restaurant for the first time afterwards, and how much fun that was. 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 new-found friends who were all in therapy for disabilities themselves, but who I just saw ass great buddies.
I always assumed my sister was just a normal kid, like me, and times where she showed 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 lot 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 (it's actually the opposite), and all sorts of other things - just because they thought that's what autistic people were like (they aren't), instead of seeing what Caley herself like.
Since I was young, I 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 told my parents, "Don't worry! She's just a late bloomer, like me!" (I was right.) I would continue to do that throughout my whole life, telling my parents not to listen to other people, because Caley was more than capable of achieving most things 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 arguments. I, being the eldest, always got the best roles in whatever game we played and, looking back, I definitely bossed her around. For some reason, she still looked up to me, 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 (and got sent to the principal's office!) 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. A lot of that was just because she was younger than me, and younger siblings are treated differently from older siblings. It's not fair, but it's not related to autism. More than that, Caley needed different rules than I had, because she had different challenges than I did. Now that I'm older I understand, but at the time I thought it was really unfair.
Being Caley's big sister also made people treat me differently. 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 made me grow up even more 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!"
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. Such an improvement in the way people see you (and the way you see yourself) will do make any kid feel good, me included.
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 Caley. Basically, thanks to her I see the world differently. I'm quicker to stand up for people being treated badly, too, just because I've seen that happen to Caley so much.
And I've learned to ignore people who think she's weird, or our relationship is weird, because we have an amazingly close friendship 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.
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 will always have the same in me. I am really lucky to have her for a sister.
