'Autistic Like Me: A Father's Perspective' Exclusive Interview
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A: Initially my wife was more accepting of my son’s diagnosis. I was in denial. [But] once I started seeing him with the therapist, I knew he needed all the help he could get. Since then we were all in it together. Focusing on our kids’ development actually made us even stronger as a couple. We still maintain our own hanging out. We spoke about it one day and said, We’re going to be dealing with this for a long time but we have to have our time too, or we’re going to drive ourselves crazy. That was an agreement we had. We have designated people in our family that can take the kids for a couple of days and we do our own thing. We’re going to the Poconos in a couple of weeks. We go to comedy clubs, we go out to eat, we do what we can. Our formula is to have our time away from the kids so when we get back with the kids we can maintain helping them develop as they get older. Like I said, it definitely brought us closer as a couple. It’s something we both feel passionate about: just hoping, and giving the kids the best so they can succeed.
Do you think mothers of children with autism will find anything particularly surprising from this film?
C: I think that women in general will be surprised that men want to help. I think women will be surprised that men really want to engage…they just don’t know how. A lot of men aren’t in touch with their feelings. They don’t really know how to begin. You have to practice speaking about these things. It’s not easy.
A: I think my wife will be surprised to see me expressing my feelings about the whole situation. When we were going through it I wouldn’t really open up and have a deep conversation with her about how I was feeling. Guys do not really express themselves when it comes to dealing with this. They’re often holding it in, either from shame or anger. There’s a feeling of, let the women handle it, let them deal. Nowadays you mostly see women are advocating about this subject, but you know, men are sensitive too, and they care about their kids. That’s important to know.
What are ways you’ve found successful to connect with your child that might be helpful to other fathers?
C: I think what’s important is for the father, or the father figure, to find a way to engage with the child. Find the common ground. It really depends on where that child is in his or her development. You can’t force them to do things they don’t want to do, it’s going to drive them nuts. You have to find out what works for them. Try to find joy in the things they love to do because the surprise is, you’re going to find joy in it too. Once you see their reaction, your heart’s going to smile. You get to be part of something with them, instead of being on the outside. It requires a lot of patience, and exercising patience takes practice: Bite your lip, your tongue, pinch yourself. They don’t dance to the same beat we dance to. Your disappointment is based on the things that you wanted them to do. Well now, find out what they want to do.
A: Patience is definitely number-one. I thought I had patience, but I had to be super-patient with my kids.... You definitely have to create a bond with your kids. Whatever they like, you have to like…you have to learn to like what they like. My son loves going to the barbershop. I bring him with me all the time. All the barbers know him in there—that’s like an event for him.
What do you think are some important things that people who do not have personal experience with autism or children with special needs should know?
A: Every day is different. You have to just live day by day when it comes to parenting, especially when you have kids with special needs. I’m definitely not an expert but I know a lot more about autism now than I did back then. I know that early detection is very important. Go with your gut. If you notice something different about your child, you have to address it.
C: I’m not an expert on autism. I know a lot more than the average person, but what I’m trying to become is an expert on me. I want to make a difference in my life to make sure that I can contribute to my son’s wellbeing. Being stuck in a dark place does nothing for him, and that’s why I’m working on me. It’s the ripple effect: If I take care of me, he benefits, and my family benefits. I think that’s the message we’re trying to put out for fathers. The primary reason we are doing this project is for dads to find comfort in seeking help and learning how to engage with their children. That’s what I’ve become knowledgeable about. I don’t know why autism happened. I’m not going to figure that out, I’m not dealing with that, I don’t even engage in those debates. I’m dealing with the here and now.
I’ve heard from many parents who have children with special needs that they would not want to “cure” their children. Would you want to change your child’s diagnosis if you could?
A: I think I would. [Crying.] This is very hard to deal with. Would I change their personalities? No—not my son, not my daughter. But my daughter…she’s still not talking fully. I want her to talk to me, to tell us, “I love you mom, I love you dad.” My son has come really far along. Sometimes I forget he’s even a child with autism, but this has been so tough. For example, I’m still going back and forth with the Board of Ed. It’s definitely rough. I love both the kids dearly, but if I could change it? Yes, I would.
C: I kind of contradict myself about this all the time. Would I change my son? Absolutely—but in the same breath, I don’t know if I would change anything about him. My concern for him is his independence. Who he is today, I love this little boy. Everything he is makes him who he is, makes him endearing to me. So changing any of that, I don’t know what that would give me. I’m in love with him, man—that’s my heart. I can’t change that.
And finally, if you could go back in time and say one thing to your past self that your present self knows now, specifically pertaining to your children, what would it be?
A: I’d say: Just open your eyes, notice the obvious. Don’t be so stubborn. Go with your gut.
C: I’d say: Stop it man, you’re wasting time. There’s no catching up. You have to do this now. I’d say, your son needs you.