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What Your Child on the Spectrum Really Needs: Advice From 12 Autistic Adults Preview

Interview with Contributor Ben Kartje

Interview with What Your Child Really Needs Contributor Ben Kartje

I recently had the opportunity to sit down with Ben Kartje, a contributor to What Your Child on the Spectrum Really Needs: Advice From 12 Autistic Adults. He talked about his interest in the project, previewed some of his advice, and discussed his hopes for readers. What Your Child Really on the Spectrum Really Needs is now available on Amazon, Barnes & Noble, and several online retailers in paperback form. It will also be available as an e-book soon. The video transcript can be found below.

Jenna: Hi Ben, well thanks for taking time out of your morning to sit down with me. How are you doing?

Ben: Good, how are you?

Jenna: Really good, thanks.

So you work in the Special Events technology department at the University of Notre Dame. And it’s football season there, and I know you’re a big Irish football fan. What’s the atmosphere like on campus right now?

Ben: The atmosphere is pretty electric as always during fall, the fans seem to always come in for Notre Dame home games. Obviously we just had the loss to Georgia, so we’ll see how that plays out this weekend, but we’re expecting a big crowd for Virginia, so we’re happy.

Jenna: Good, good, well thank you for taking the time today, and I really appreciate you taking your time over the last couple years to talk with me and work with me to write your story–write a little bit about your story at least–and just what’s mattered most to you growing up on the autism spectrum.

What made you interested in participating in this project in the first place?

Ben: Well, when you first reached out to me, and asked me my opinions and asked me to get involved, I was highly interested in the beginning because I like helping people out. That’s a big thing for me, personally, I just like helping anybody with any advice or any coaching. I’m always doing that with my employees who I work with. So when you reached out to me for this book, I said “yes” because, for me, it’s just a great opportunity not only to share my story, but also to help other people that might have some trouble with their own children.

Jenna: Yeah, that’s great. And I appreciate your time because I’ve been trying to access autistic expertise, and I feel that you have a lot to say and important things to say that parents and doctors and therapists and other caregivers just can’t, so thank you.

Ben: What I really like about being involved is I had the opportunity to reach a much bigger audience than me, personally, could ever reach by myself.

Jenna: Neat, neat. That’s great. In your part of the book specifically, you talked a lot about your school experience. So what are some of the problems you encountered in school and what did people do that you found helpful? Can you talk a little bit about that?

Ben: Some of the big problems I had, obviously in the book I address that I got bullied a lot in school, so that was obviously a big issue. The other issue was all of the classrooms that weren’t exactly organized as well as some others presented some issues just because it seemed like the teacher didn’t have a full handle on the classroom, and that created chaos for me because, being autistic, I didn’t really know what was going on in that specific time or place. So those were a little bit of complications and issues just because the bullying took away from me being able to learn, and the chaos is something that I just wasn’t prepared for and really caught me off-guard. 

But some of the things that teachers did to really help were…I would offer up advice or suggestions or talk to the teachers personally, and that’s what I kind of liked because most of the teachers, they’re just people like you and me–they like to talk to kids and associate and get advice on how they can better assess their classroom, and I was able to offer some suggestions and advice about what could be done and that way the teacher could take that advice and those suggestions and put them into a format where it was a lesson plan and they made a point of addressing some of my concerns in the classroom, so that really helped.

Jenna: That’s great because that probably helped you and probably a lot of other people to follow you.

Ben: I hope, yes.

Jenna: That’s great. So part of part of this book discusses the problem with functioning labels. A lot of the contributors spoke about that (categorizing autistic people as high or low functioning), A lot of people mentioned this as a problem, citing a variety of different issues they had with this classification. But I thought you gave me a really powerful response to this issue articulating what I thought was a unique perspective. I have your quote here, I’m going to read it:

When a doctor or another person refers to me as being on the “high-functioning” end of the spectrum, that doesn’t really make sense to me. Does that mean that I’m almost “normal”? What pops into my head is, “There’s Ben; he’s that dot right there!” Like they’re graphing the whole thing. I don’t really understand what they are basing their decision on. What is normal? Do people think it is a compliment to be considered “high functioning”? To be considered “almost normal”?

How have you handled this kind of categorization or labeling throughout your life? I’m sure you’ve heard it a lot. How have you dealt with it?

Ben: I don’t really think too much or dwell on that categorization too often. It was something that I have to deal with, that I have to live with. It’s who I am. But I don’t try to change it or I don’t try to fight it and think, “Oh, I’m not normal.” And some people might say, you know, “Oh, you know, here’s you, and here’s the spectrum, and here’s how it plays out.” It’s just not how I’m going to choose to live my life. I’m going to be who I am, and if people don’t like it, then they don’t like it.

Jenna: And not necessarily focus on where you’re at?

Ben: Right.

Jenna: So does it bother you if people refer to you as ‘high functioning’ or say, “Oh, you have autism? You must be high functioning!” Does that bother you?

Ben: Yeah, that bothers me a little bit because they are still putting a huge weight on the spectrum, and where I’m at and where they think I’m at on the spectrum and they’re thoughts on it. It always kind of throws me off when anyone brings it up just because obviously they have done some research or associated themselves with other autistic children that are not as “high functioning” as I am or as “put-together” as I am. But I just kind of take that and I don’t really expand beyond it. I just kind of cordially end the conversation because those people who say those things have misconstrued ideas to begin with, and I just don’t want to change their method of thinking, but as well I don’t want to try to promote what they are trying to do or talk about.

Jenna: Yeah, it’s obvious that they have some misconceptions or some preconceived notions about autism that you don’t agree with, but sometimes it’s difficult to give everyone the lecture they need to have in all situations. 

Ben: Yeah.

Jenna: Well I really appreciate your time. So, as we close, can you tell me what your hopes are for the audience of this book?

Ben: I really hope that the audience of this book just really takes the information to heart. There’s a lot of great information in there from a lot of different people that are autistic, including myself. We live this daily life, we know how people react to it. We see it every day when we involve ourselves with other people, whenever we go out to dinner, whenever we do something with our families. Every aspect of our lives, this is there. It’s who we are.

So I do hope that people kind of listen, and, like I said, take the information to heart because if they really pay attention and take the advice we give in the book, they can help their child have a more structured and successful school and upbringing, and it’ll just make everything a lot smoother when they transform themselves to young adults and adults and being able to look back at their life and say “Wow, my parents really listened to the advice of these people and they really took that to heart, and I’m grateful that they listened to these people. These are the things that helped me along the way.”

Jenna: Yeah, and what better perspective to follow on the autistic experience than that of someone on the spectrum?

Ben: Right.

Jenna: Okay, well, thanks a lot for your time. I really appreciate it!

Ben: Thank you.

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