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SILLINESS AND SISTERHOOD. Benson feels grateful to have grown up alongside Eve's confident spirit and contagious joy. "She says what she's thinking, which is not always great, but generally, I think growing up with that presence has taught me ... that my words are valued and that I can speak up," Benson said. (Submitted Photo: Violet Benson)

McKoy: Hi, you’re listening to the second episode of Coffee with Clara. I’m your host, Clara McKoy, and today I chatted to senior Violet Benson about her relationship with your sister—who has autism—and the impacts she has left on Violet and her family. Today, both of us were in more of a tea mood than coffee, but nonetheless, enjoy the episode.

Benson: Okay, I’m Violet Benson, I’m 17, and I am drinking an iced chai with oat milk.

McKoy: And I am drinking an iced vanilla matcha tea latte. So, let’s get started. Can you tell me a little bit about your family?

Benson: Yeah, so I have a twin brother, and then I have an older sister who is 21 and she has autism. And I have a mom and dad. And I love my family.

McKoy: Cool, do you want to tell me a little bit about your relationship with everyone in your family?

Benson: Yeah, so my sister and I have kind of an interesting relationship because of her autism and how it presents itself. So for her, it’s a lot of things that can be embarrassing to, you know, me, a neurotypical person. And I love her, and it makes her who she is. But it was really hard to get along with her and still is because it’s not really socially acceptable for her to be doing these things. It’s been kind of a big part of how my family dynamic is, because in our household we kind of revolve around her because she needs a lot of attention and care and … and it works. I really have an amazingly supportive family and my parents have always done a good job of trying to make sure that my brother and I get the same love and attention that she got, but it’s definitely been hard.

It’s a little lonely because … I’ve talked to my family and we’ve kind of felt like there’s a grieving process of grieving the sister and daughter that would have been, which isn’t something we like to dwell on. But, when I think about what having a neurotypical sister would be like, I sort of get jealous over and sad that I miss out on things like talking about boys and clothes and anything, you know—high school things.

McKoy: For sure. What about your relationship with the other members of your family?

Benson: Yeah, so, my twin brother and I, we have a really good relationship. I feel really lucky to have him in my life because I feel like he’s sort of my partner in crime. We could always side eye each other when my sister says something embarrassing, and I’m really glad that we’re on the same team.

It’s really weird being a twin though, sometimes I can’t believe that I have a sibling that’s also in my grade, that’s also kind of my friend, but also my sibling. But, especially as we’ve gotten older and gotten our driver’s licenses, we’re not forced to be together all the time, he’s really turned into more of a friend, which is great.

McKoy: Yeah, that’s awesome.

And then my parents, I’m really lucky to have a good relationship with both my parents. I’d say they do a really good job of trying to understand what my brother and I … that we have to deal with my sister. And like I said, they’ve always been trying to give us equal attention and love and they make sure to carve out time for us for sure, which is really amazing.

McKoy: Yeah, absolutely. So, your sister was diagnosed with autism after—or before—you and your brother were born?

Benson: Yeah, right before.

McKoy: Okay.

Benson: Yeah, the diagnosis process … I mean, their lives completely changed because my parents—my mom was a public health nurse, my dad was a musician and kind of working in some internships at tech companies. And, they were really excited. They wanted two kids, they kind of had this plan, sort of. And my sister was born and everything was pretty good, and then there were just some things that they noticed that weren’t really typical. She never crawled, she only scooted. And she didn’t do some typical things, like she couldn’t chew or feed on her own. Then when she was three, she was diagnosed with autism.

And, I asked my parents if they were sad about that, and they said that they weren’t sad because she was autistic, because obviously they would love her the same, but, they were sad because they knew that it was going to be really challenging for her to live in a world that’s not built for her. And then they really devoted themselves to finding all the therapists, and all the specialists and the doctors to find the best way to help her thrive. And then they got a ton of genetic testing too, because they wanted to have two kids—because they both had siblings—and they got a ton of genetic testing to rule out that it wasn’t genetic, and that if they had another kid it probably wouldn’t also be autistic.

And then my mom found out she was having twins, and that was … oh, man. She said she cried, and she was just fully not ready to have two more kids because it was so hard to figure out having one kid with all these differences. But then my mom said although it was super hard to have two kids at once, we were super easy because we just did things that my sister Eve didn’t do right away when she was born. Like she was like, “Oh, you guys just walked on your own.”

McKoy: So you already talked a little bit about how your life has been impacted by your sister’s autism, but can you say a little bit more about that?

Benson: Yeah, for sure.

I’d say the biggest impact is … it definitely changes, but when I was little, I think the biggest thing was that she took a lot of my parents’ energy and attention and it was really frustrating for my parents to figure this out. And I felt sort of left out a lot, and I always had the classic—I think most kids have this when they have siblings—but the classic, “Mom and dad love Eve more than me.”

Right now, I think the way she impacts my life is because there’s some tension … like the house feels really full right now, even though there’s just five of us because my sister would be you know, if she were neurotypical, she probably would be in college or not living with us anymore. And the past four years of her living with us, you can really feel that, there’s a point that kids usually move out and it’s definitely frustrating to have this presence that takes up so much energy in the house. Especially when I’m also in this point in my life where I’m maturing, I’m also wanting to take up a lot of energy in the house.

And then my parents have had to try to figure out where she will go if she’ll ever move out. There was also a big legal thing where my parents had to get guardianship of her when she turned 18. And it was a big process. And it was very confusing. And there’s just tension, because we have five adults living in our house.

That being said, it’s been really hard, of course, but she’s also I think really positively overall impacted me and my family. I mentioned this before, but she has amazing confidence. I don’t think she can be embarrassed. Oh, man, she sings so loud, with so much creativity and creative liberty.

She says what she’s thinking, which is not always great, but generally, I think growing up with that presence has taught me a lot about … that my words are valued and that I can speak up.

And I’m also really glad to have grown up learning about people with differences, and disabilities, and special needs, because I feel like have a good understanding of learning about all that and I think … I just value that open-mindedness that I grew up learning.

McKoy: Are there any specific things that you wish more people knew about people with neurological differences or people with autism?

Benson: Yeah, that’s a really good question.

I’d say I think something I wish more people knew was that they’re doing their best. And they are trying their best to thrive in a system that isn’t built for them. Because there have been situations where my sister has been yelled at or ridiculed by adults, by kids, by anyone for doing something wrong.

She tries so hard, and when she’s rude to someone, because she says something—points out something—she really is trying her best to connect, to find something that she can say that will connect with this person. I just think that’s so true with a lot of people with special needs is that they’re trying their best. They’re working so hard. And it might not seem like it because their working hard might not look the same as a neurotypical person working hard, trying to thrive. But I think that a lot of times they deserve a lot more grace than they are given.

McKoy: Is there anything that I didn’t ask about that you want to add or say?

Benson: I think Eve has a really bright future. A lot of times the family of someone with special needs, like the people close to them, are really affected. And I think that’s something … I think in general, autism isn’t talked about enough, but also just the relationships. I’m really glad I got to talk about this.

McKoy: Thank you so much for sharing.

Benson: Of course.

McKoy: Thank you for listening to Coffee with Clara. Looking for more? Head to Episode One with sophomore Atari Ernst and stay tuned for next month’s episode.

Royalty free music from Pixabay by Coma Media.