'Autistic Like Me: A Father's Perspective' Exclusive Interview

When filmmaker Charles Jones’s fifth child and only son, Malik, was diagnosed with autism, he felt ashamed, angry, and alone. He chose to work through his emotions the best way he knew how: by making a film. Autistic Like Me: A Father’s Perspective is a feature documentary film directed by Jones, chronicling the journey of five fathers whose children have all been diagnosed with an autism spectrum disorder. One of those five fathers is Anthony Merkerson, an NYPD cop who lives in Queens with his wife and his two children—a son and a daughter, both of whom have autism.

We sat down in our office with Jones and Merkerson to learn more about their perspective as fathers, but it became clear very quickly that their experiences, and this film, will speak to all parents. Both men spoke honestly about many topics including their initial feelings, how they relate to their children, what they wish other parents knew, the impact the diagnoses had on their marriages, and their deep love for their children.

Interview by Vanessa Friedman

How did you feel when you heard the initial diagnosis of autism for your child?

Charles Jones: I felt alone, but that wasn’t the only emotion. In retrospect the reality is I felt shame. I felt isolated because I wouldn’t share it with anyone in my inner circle. Even my father—it took me a while to talk to him.

Anthony Merkerson: Yeah, this was all new to me. I didn’t know any other fathers or parents dealing with it. You see things on TV about autism, but when it hits home with your own child…first thing was denial:

“My son? No, nothing’s wrong with him, he’s fine.” But deep down I knew something was wrong. It made me feel numb, and I did feel like I was alone.

Once you heard the diagnosis, did you worry about how you would fulfill your desire to teach your child to be a man?

C: Absolutely. I wasn’t informed. I was uneducated, so my imagination just flew. I am actually ashamed to say what I thought autism was, but it was pretty ugly. I had looked forward to raising my son and teaching him everything that I know, to be a better version of me…I wanted my son to be a reflection of me and all my good qualities and none of my bad so, now, how would I be able to do this? I didn’t think my son would ever talk. I didn’t think he would ever tell me he loves me, I didn’t think he would ever communicate with the world, so that was gone.

A: Your thought process changes. You know, I thought, “If I try to instill things I learned from my father, that I want to teach him, will he even understand?” Initially the goal was just making him say a word, a couple of words. You know? Just that alone was the goal, let alone teaching him how to be a man.

And has your child now taught you to be a man in a different way?

C: Absolutely, absolutely. He definitely opened my eyes to what’s important. I’ve never been so focused and driven about anything in my life. I realized that you can’t fight this. There’s no point in feeling sorry for yourself and there’s no point in feeling sorry for him. You have to engage. You have to participate, help, be part of the solution. My wife said, “If you can’t join us, you have to get out the way.” The whole circumstance woke me up as a man. It gave me purpose. I’d like to think that I had some purpose before that, but in comparison, none of that was important.

A: Yeah, before all of this, I think I was living all right…but it was more about me. I went out a lot, I used to always buy clothes and sneakers. But now it’s like I live for the kids. Everything I think about is about them. I’m a police officer, so I work, but my purpose now is just the kids. That’s all I think about, is both of them and my wife—we’re all in it together, so that’s the focus.

Can you talk a little bit about early detection?

C: We caught it with Malik at 2½ but…I feel like we missed [some] time. He’s doing well now, but still, I don’t think understanding is as commonplace as it should be. Just like detecting whether you have the mumps or not, or any other childhood disease, parents should be armed with the knowledge to know the signs about detecting autism. Because the problem with missing it, especially in underserved communities that don’t have knowledge—and I was in that community one time—the problem is, if we don’t find out early now, we’ll pay for it later in society. It’s in our best interest that these children are diagnosed very early. You can’t even begin to do the things that you need to do unless you’re beginning in the beginning. You’re giving that child an opportunity to manage that condition. You give them a better chance at becoming a member of society. There is no catching up. Early intervention, early detection, it’s critical.

Did early detection give you peace of mind?

C: Actually, it was the beginning of a really rough time [for me] because ignorance is bliss. Once we knew, I was angry, I was pissed off, because as I started doing research I was like, “My kid? Are you kidding? No.” That was the beginning of the darkness for me. It didn’t make me feel better at all. It made it worse. I was not easy to be around. It wasn’t pretty. The fears were the worst…and the pain. It turned into anger because it wasn’t being processed in a healthy way. All that anguish came out as anger.

Charles, in the film you say: “For a father, a son is like a mirror in which he sees himself, and I couldn’t wait to watch [my son] grow.” Do you still feel like your son is a mirror in which you see yourself, and, if not, how has that shifted?

C: If you see pictures of him, he’s my twin. So, yeah I see myself. Life has a funny way of changing things for you. Although my son’s condition was a disaster to me initially, over time he has amazed me. I see a lot of me in him. He’s very loving, he’s very sensitive, he cares and he’s affectionate, he’s a big baby, he’s a big teddy bear…and most people don’t know that about me but I’m basically the same. So I do see myself. All the other things that I wanted, it’s not that important, they’re not as important as I thought they were.

A: Besides my son looking similar to me, just personality wise, he’s definitely a clown—I think that’s how I am too. He has a great sense of humor. Even when he was a baby he was always smiling, always laughing.

After we hear that line in the film, there is a comment that upon diagnosis, “it felt like the mirror broke.” That sounds like a different place than you are in now. How did you get from there to where you are today?

C: It’s been a blur, to be quite honest with you. I was gone. I mean, I was there but I wasn’t there. The more I talked about it, the more I started thinking about it, the easier it became. The whole process of making the film was therapeutic, so it has changed for me. I have evolved into acceptance. I handle it differently.

Are the children featured a lot in the film?

C: Honestly, to a lesser degree than some would want. One of the things I told everyone when I first approached them was: I will not exploit your children. We don’t need to show them having meltdowns….We don’t need to exploit people’s pain and make people uncomfortable. But there is a reality here, and we do need to show these children. Because the reality is, these kids, they don’t have to have a meltdown for you to see that there’s something different. Pay attention and you’ll see that there’s something different. But you also see them and life is just as typical as in anybody else’s home. I wanted to show that, and then contrast that with a little bit of the difference.

And how do you feel when you think about your kids potentially seeing this film when they are older?

A: I think it will just be more concrete evidence of showing how much we love them and how much we did for them when they were young kids, so that would be great if they could see how we tried to help them.

C: I’m trying to make something to be proud of and for my family to be proud of, for my children to be proud of. I don’t want to do anything that’s going to hurt anyone intentionally, and that includes my kids. Actually I want my son with me while I’m doing the editing process, you know, I want him hanging out with me, I want him to see this. He has this photographic-memory; he can remember a whole show and script it. He can quote everybody in the trailer! He’ll say, “Daddy, we working on our movie today?” Does he really get it? I don’t think so. The great thing is he still has his innocence. He doesn’t feel ostracized; he doesn’t feel like an outsider anywhere he goes. Everybody loves him. He’s very personable so he doesn’t feel negative about anything. He’s only 7. I hope to God he gets to see this, see what I’ve done, and how he’s inspired me. That’s important.

Tell me about your relationships with your wives. You often hear that the strain of having a child with autism can ruin a relationship. Do you feel that’s a struggle?

C: First of all, Anthony and his wife inspire me. They’re so positive…I looked for the cracks, but there aren’t any. Personally, my wife and I [are] separated. She and I are still very close and I love her dearly. I own a lot of why we are where we are. My son’s condition had a direct impact on me and my personality and my ways. I didn’t know how to be happy. I wasn’t pleasant. I wasn’t the lively person that my wife had married. She was a rock. If it wasn’t for her, we wouldn’t even be where we are now and Malik wouldn’t be where he is. I was too selfish to realize she needed my help—not even that she needed my help, that we needed to do this together.