BEN: I feel nervous, about what high school I'm going to.
AMY: Okay, Library.
BEN: I don't want to be in some class with like - I don't want to be in some private school either, like, I don't want to be in some weird school. I want to be in like - I'm going to be in school of my friends.
AMY: It's the same thing with me when I go to Westdale, I won't see my friends since it's such a big school, and we'll be in completely different classes on completely different days with even sometimes different lunch hours.
BEN: Yes [unintelligible] I realize that.
AMY: So you're going to make new friends in your school just like I'm going to make new friends and my school.
BEN: Maybe I could keep some of the old friends in my class.
AMY: You're going to keep old friends. I'm going to keep old friends. You have Instagram to stay in touch with them, remember?
AMY: And you can always call them and ask them to hang out if you ever missed them.
BEN: Okay. Okay
AMY: That's me with my brother Ben. We are twins. We are 13. We are in the car driving past Sir William Ozler Middle School in Hamilton, Ontario, taking a trip down memory lane. Well, actually we both just graduated from middle school in June. I was in French immersion. Ben was in a regular class with an educational assistant, or EA. Growing up, I didn't really understand that there weren't speech workers for every single child. I just thought Ben had them and I didn't because why not. It was maybe chosen at random. I do know that the speech therapists help you a lot.
BEN: Yes. And they did and they made me say words like they had flashcards and they like would tell me to read like the words, and I remember of one of the first words I read out loud was và. The first word I read out loud was va.
BEN: I remember everyone was happy and like clapping and like mom came down she was ecstatic. She was like, she was like: “Ben! You said the word!” And I was like “Whatever.”
AMY: I think you were pretty proud of yourself.
BEN: I was pretty proud of myself.
AMY: Ben has to find who I am, in a lot of ways. I'm known as Ben’s sister. Obviously, people know me by my name, Amy, but if I'm just meeting them, or if we haven't formally met yet, they will say: “Oh, your Ben’s sister” or when been acts out they will come to me for help. When Ben is having a bad day at school, it's kind of embarrassing. At times I'm grateful when I get to leave class to help him but it's the only silver lining. A bad day for him at school is running through the halls, him bursting into a classroom and saying inappropriate things or grabbing random people by the arms and striking uproot conversations, or just being generally disruptive.
BEN: You are not autistic. You cannot understand a disability unless you have it. Like you can try, but you can't fully understand somebody who has a disability unless you have that disability. Like you cannot understand someone who can't walk or who was in a wheelchair or not…
AMY: How do you think I could understand your options better? What are some tips you can give me? Like a life hack. Give me a life hack for understanding you?
BEN: I will give you a life hack. Always try and assess my behavior. Like if it's… If it's… Like if if I'm not behaving well, then there's probably a reason for it.
AMY: Ben and I have gone to the same school since we were in junior kindergarten. But this fall that's changing. I'm going to regular high school and Ben is going to a special school for kids with autism and I'm still trying to figure out how to feel about all that.
DAN SIERTSEMA: My name is Dan Siertsema. I am an elementary school teacher of grade seven and eight students and Ben's teacher.
AMY: Mr. Siertsema was one of my favorite teachers in middle school. My brother changed and grew a lot in Mr. Siertsema’s class. I tell Mr. S about why I'm nervous about going to new school without Ben. [To Dan Siertsema] I'm not going to be there for Ben anymore. I'm not going to be able to go into his quiet room when he needs comforting, or he's not going to be able to run into my classroom whenever he's acting out and I can calm him down. It's stuff like that. Usually when Ben had a hard day at school I would be able to see it and come home and tell Mum about it, my perspective, not just the EA's perspective. But now it's - I know nothing about Ben's day. I know nothing about the people at his school. So if someone says: “Oh Ben was terrible to this person today” I will be able to know if they're a person that's provocative or that likes to instigate, because I won't have met them. Yes I am worried about everything, but I'm so excited.
DAN SIERTSEMA: So I think my advice for both of you is to find - Now is the time to start finding your own path. So as you move into high school it's about finding and defining yourselves separate from each other. And I do believe it will actually help you be closer at home. Spending so much time, together and in each other's worlds, is challenging. I think my personal family works best during the school year and I think in the summer we actually struggle, because we get on each other's nerves. So, I think moving into high school you guys have to look at it as like “Okay, this is my path now. It doesn't mean that I'm not concerned about my sister or my brother. It doesn't mean I don't love them but now is my time to find myself identity. “
AMY: Do you have anything to add just about Ben and how… Ben.
DAN SIERTSEMA: I think that the world is very complicated and complex. We strive all the time to simplify things. We call it like a cognitive shortcut. Right. It is why we develop stereotypes. But I think it's better maybe if we just try to embrace the complexity of the world instead. And I think Ben, for me, kind of represents - He's symbolic of that complexity. You know where things aren't always as they seem, that you have to delve deeper. You have to look behind the action. You have to understand the motivation that what you're going to see is not always the intent. So, I think we have a lot to learn from individuals who don't fit a mold. And Ben is one of those individuals.
AMY: Yes. I think complex is also a good way to describe my relationship with Ben. We try and get along. It doesn't always work out that way. That's the yin and yang of us, of twins, of a regular sister with a brother who has autism.
BEN: Wow! I'm really mature.
MOTHER: Could they hear that?
AMY: His [unintelligible] are going to be edited out, and come on Mom.
MOTHER: [Unintelligible] and all that.
BEN: Sometimes I think you like to advertise your autism. Like, you want it - In public you'll make it known that you've autism for no apparent reason, even if you're not acting silly or anything. You'll just yell I have autism, randomly.
BEN: I stopped doing that like forever ago.
AMY: You did it tonight.
BEN: No I didn't. I… Not a single word came out of my mouth about autism.
AMY: You'll act silly in public for attention.
BEN: Yes. I am aware of it. It's like… it's like I am overstimulated. There's too much light there's, too much sound and it's all coming in at once. It's just like flooding my brain.
AMY: I know what your sensory overloads are like. And I'm talking about the times where it isn't a sensory overload.
BEN: What are sensory overload like? Describe it to me. Just describe.
AMY: You know what your sensory overloads are like. You're the one who has them.
BEN: It's just like every part of my body hurts and I get overwhelmed. It's not good. I get very irritable and…
BEN: Your life is actually pretty good. If you had to experience some of the drama in your life, that I have to experience in mine, you would hate it.
BEN: If I got involved with girl stuff I'd probably be scared for my life.
AMY: So as you can tell, like most siblings, we don't always get along. But there are plenty of times we do.
BEN: I was playing with a wheel.
AMY: Ben, look at this one. This was at Grandpa's farm, right. You were: “Oh no. This is…” [Narrating] Like taking on the trails or writing stories or looking at old photos together. He loved to play with wheels and things.
AMT: Do you still have to do that?
BEN: Kind of.
AMY: I think you were kind of interested in the keys on the piano.
BEN: Yes, I was. I was interested in trains, too.
AMY: I remember that you loved trains and volcanoes, too.
BEN: Yes, I loved volcanoes.
[Sound: Birds chirping]
AMY: Looking ahead to next year, what do you think you're most nervous about, or excited about, or both? Since we will not be in the same school anymore, you're going to have to be on your...
BEN: Just being independent and like maybe making new friends and. Like...
AMY: Are you excited to be on your own, or are you scared to be on your own, because I am your safety net?
BEN: 50/50. I'm just worried I'll get bullied or something. Sometimes people just like they treat me like a baby just because I have autism. Like they talk to me like a toddler a puppy, and that's not very nice. Like I remember this person I was messaging on Instagram, once they found the autism they started treating me like a kid. Remember that?
AMY: I do not. How did you feel about that?
BEN: Not very good.
AMY: The truth is I feel 50/50 as well, about going to school without Ben. Not just because I won't be there for him. But I'm also worried that I don't know exactly who I am without him around.
CRYSTAL ASHER: Oh I can sit up here if it is more comfortable. Okay.
AMY: As the first day of school approaches, I know just the person to talk to about this. Crystal Asher is the mom of one of my best friends. She's known me for most of my life and she's been through a lot. Crystal is always there with good advice. [To Crystal] What do you think of my relationship with Ben?
CRYSTAL ASHER: That's a big question. I wonder. I mean I've wondered since you were little about your relationship with your brother and what it is like for you, and how you know your identity to a large degree is defined by your sibling, I think. I mean, you know, so much of the world relates to Ben in terms of his disability. You know, his difference, right his, like otherness. And I wonder how you feel about your otherness, which we all experience, and how, to what extent you feel as though that's allowed, you know?
AMY: So to answer your question - I don't know if this is going to give you an exact answer - but I still always, I felt since Ben has autism, I do you have to force myself to be more normal. I focused a lot on my behavior. I've I watch videos on like how not to be weird. I would look it up. I didn't want to be like that. Every time I acted out or someone looked at me weirdly I would wonder: “Oh do I have autism?” Like…
CRYSTAL ASHER: Wow, really?
AMY: Yes. And maybe like, I'm assuming not everyone is like this, but I always feel that, since my brother and I are so different, I have to stick to that role of being different. Kind of like you said. I have to keep all of my friends even if I want to hang out with one person, which I usually don't. I usually enjoy hanging with huge groups of people. If someone asked to come along I'll be: “Ok well don't want to seem introverted or like hiding from people. So that's my answer. I don’t know if it helps.
CRYSTAL ASHER: Mm hmm. So sort of who been is the world really shapes. Who you kind of get to be in the world? You've got to be not that, in a way. One thing that really strikes me is, you're kind of like a translator, in a lot of ways. You are that person - Have you ever seen a translator, in action?
CRYSTAL ASHER: Right. You know, they give the translation but then they also give context. Right. Usually. So sometimes the translation is weird. Right. You know when you hear like idioms in French and they're translated and you're just like: “What? The cows are falling from the hemisphere? What?!” You know like it doesn't make any sense, but then if the translator is a good translator, they will say: “Here is what is meant by that. And here is something that you can compare that to in your own language” and you do that with your brother. You take his behavior and you put it into context with the people around you. Right. So you make it comfortable for Ben, and you make it comfortable for the people who are sometimes like: “Oh!” about some of your brother's behaviors, from time to time. And that and that's really important because not only are you handling the [unintelligible] but what you're doing and you probably don't realize this, but your facilitating cultural shift. You're helping change the narrative in your community. Because, like I understand more about autism because things that because of things that you have explained to me, very casually and very subtly and very different ways to how your parents do. Like your parents are more like advocates for Ben. You're like this cool customer who just kind of like that finesses the situation.
AMY: What is your advice for me going into high school?
CRYSTAL ASHER: Yes. I mean this must be a huge crossroad for the two of you. I mean your 13, turning 14, in a couple of months. This is a time in your life when you need to be selfish. And I never thought I'd be telling a 14 year old that they need to be more selfish [laughs].
CRYSTAL ASHER: But I think that you going to a different high school to Ben, is going to facilitate you finding out a lot more about who you really are as an individual. Do you know what I mean?
AMY: Yes, I think so. I think I do, yes.
CRYSTAL ASHER: I feel like we went pretty deep.
AMY: I know. We did.
CRYSTAL ASHER: [Laughs]
AMY: Thank you very, very…
AMY: As we drive past our middle school, Ben reminds me what it was like when we first came here in grade 6.
BEN: Just thinking about when I used to go, when I came to this school. I was so frightened and I was happy.
AMY: Why were you scared?
BEN: Because it was a new environment. That's why.
AMY: Do all new environments scare you, or was it just a new school that frightened you?
BEN: You know, a new school, but at the end of the day, it was actually a good thing that I went here.
AMY: So you think that when we go to separate high schools that our relationship is going to change at all? Do you think it's going to be for the better? Absence makes the heart grow fonder, or for the worse, we're going to drift apart and become distance?
BEN: We're I think… I think… I think we'll be closer because we won't see as much as often. We won't see each other as often.
AMY: So we're going with the absence makes the heart grow fonder route?
AMY: The day is finally here. It's time to go to our first day at our new school.
BEN: I hope you have a great day today.
AMY: You too. I love you. Stay safe.
BEN: I will.
AMY: [Sound: kiss] Bye.
AMY: Ben looks a little nervous and excited too, as he gets into my mom's car.
[Sound: Car engine starting]
AMY: I'm excited too. I walk through the doors of my new school and I'm suddenly a little fish in a big pond. Some of the grade 12 students look like grownups and they have beards. I go to art class and English class and geography. And then in the Latin class, I hear yelling outside the door. And for a second, I think it's Ben about to burst in. The feeling was odd. Like Mr. S said, it's complicated.
BEN: Okay Amy we've been in our separate schools for a month. How is your school life going?
AMY: School is stressful obviously. It is a big change from grade eight but I was a lot more worried than I should have been. There's not as much homework as I thought. Of course I have late nights where I have to stay up and study but I thought every single night.
AMY: How does that make me lucky?
BEN: You get like freedom like you have a responsibility and with responsibility comes freedom.
AMY: Then I have so many responsibilities but that does not mean I have freedom. I have nothing near freedom. So what's it been like for you the first month of school?
BEN: It's been good. It's been relatively good. I really want to get into a normal high school maybe. So I'm working hard and like the school works hard but hey it's just a part of life like don't take it personally. It's a smaller school only has about 21 kids and they're all in the spectrum. Some are higher functioning than others and I'm one of the higher functioning kids there. So I get to do special privileges. Like, I help out a lot. Like, I do lunch monitor. I lunch monitor every day. I do a lot like I help I help calm the lower functioning kids. I help assess the situation. I kind of help translate because I'm on the spectrum. Like if they want something I'll tell the teacher what they want because they're not sure. Sometimes like for example the other day there was a kid he couldn't talk and the teacher wanted him to get up and go do something and he was still eating, like he had food in his mouth so he could have choked and I told the teacher that and the teacher told him to finish his food. Amy what's it like without me in the same school?
AMY: It's different. You know it's. I don't have to watch over it was more which is I guess good and bad. I haven't really deciphered or haven't figured out if it's good or bad yet. Last week when you called me to talk about your break down at school, it was really - It was a different feeling. I was, that's kind of one of the moments where I really noticed that we were not at the same school anymore how different it was. I heard that you got through it okay despite having a pretty hard morning and that made me pretty happy. But I was also pretty happy to know that you needed my help and that I could help you with it. I was of use. I could talk to you.
BEN: That's fine. You cannot always be there for me. I can take care of myself.
AMY: I know. Since it's only been a couple of weeks since we've started school and been in different schools, our relationship hasn't changed too drastically. But I've noticed that it's shifting a little it's changing a little bit. It's starting to become different.
BEN: For better or for worse?
AMY: For better and for worse. I think that we're less annoyed with each other because we're not seeing each other all the time 24/7.
AMY: I can see in the future not right now but I can see that it might start pulling us apart and that we might not be as close anymore and that's a little scary.
BEN: Well we could - that's like not set in stone. Like we can try and like become closer as siblings. I mean like we're close right now so we just have to maintain that bond.
AMY: I know we don't have to drift apart. It's just it's happening on its own. I'm also incredibly worried about you, a lot of the time or at least some of the time.
BEN: That's understandable.
AMY: I hope you know that I brag about you to my friends a little more than is socially acceptable. I love bragging about you and talking about your accomplishments and when you're done.
BEN: That is socially acceptable.
AMY: My new friends that haven't met you. A few of them want to meet you. So you're pretty popular among my friends.
BEN: Maybe you can hook me up with a few.
BEN: Tall and handsome. I Could build . Nice and clever and smart and caring and Kind of a lady’s man.
AMY: [Laughs] Yes you are.
BEN: Look at my smile.