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On Fathers and Autism

On Fathers and Autism


        Dr. Bob Naseef is a psychiatrist and father of a son with autism. The following is part of a speech he presented at a panel on parenting at the 1999 Conference of the Interdisciplinary Council on Developmental Learning Disorders.

      My son, Tariq, is going to be 20 years old in two weeks. We are having a big party for him, if you are in the neighborhood and want to come by. What's remarkable to me is that I woke up a few months ago and said, "It's his 20th birthday. Let's have a party." He hasn't had a party since he was one.
      I am not proud of that, mind you. But I've watched my friends kids growing up, and some of them are going to the University of Pennsylvania and the University of the Arts, and they are going away to college other places. My son Tariq has made very good progress for him in the past year and a half. He will probably be able to go to a sheltered workshop in another year. And that looked not possible. So in these intervening 20 years I have learned to accept that is the best he can do, and that is damn good for him, and it is a good reflection on me.
      I have a picture of Tariq at one day old. And you can see the gaze. He bonded right away. As other people have pointed out, it is pretty devastating getting that initial diagnosis.
      Let me share with you why I think that is true. Maybe if I wasn't a professional psychologist I couldn't put this into words, but since I am I can. We bonded most of us who have kids on the (autistic) spectrum with what seemed to be a normal infant. And then one day we found out that our perfect baby was no more.
      We lost the baby we thought we had. And then we were faced with understanding what had happened and bonding anew. I'll tell you speaking for myself that it took mew a while. It was a darker age when Tariq's autism developed. He went through early intervention. It was primarily behavioral. It wasn't until he was five years old and went to the center

      It is harder for men to talk about this than women. Women seem able to talk about problems without needing to fix them. Men, when we can't fix something, we don't want to talk about it.

      for Autistic Children where he was exposed to a developmental approach. It made a huge difference. He became a happy kid. I learned to enjoy him and accept him as he was, but it wasn't what I wanted.
      In that developmental approach, I learned to follow him. How to have fun with him. When I saw those videos this morning, I went back and relived the whole thing. And went back and wondered what I didn't notice before 18 months. But he seemed pretty normal. Certainly I celebrated every day of his life. Now I have learned to celebrate his progress as he makes it now.
      I think in some ways the reflection of this panel (5 women and two men) shows that it is harder for men to talk about this than women. Our society and our gender doesn't really prepare us too well. What I learned is–it seems simple now–but at the time pretty complex. What I learned was that women seem able to talk about problems without needing to fix them. Men, when we can't fix something, we don't want to talk about it.
      There is a fairly recent book that came out of Boston by a man named Terrence Real called I Don't want to Talk About It: The Legacy of Male Depression. So my son helped me face it. Whoever you are when this happens to you and your kid is diagnosed, then you process it as who you are. So he made me face–Tariq made me face–a couple of generations of male depression in my family. My father was an orphan. He lost both of his parents by the time he was 8. I grew up in the shadow of that grief and then faced the son who was different from the norm. It was so hard to comprehend. It took me a while to learn to enjoy him. I will show you some pictures of me enjoying him.
      Some dreams will never come to be. He will never play a little league game. He has never played a little league game. But we do run together and that is something I imagined doing with my son. We canoe together. This is something I imagined doing with my son.
      Some dreams are deferred and some dreams are remade. At times what stands in our way–our children are very lovable as we can see in all the photos and videos–but sometimes chasing them around, going in circles, they are hard to be with.
      When you love somebody, you love to be with them and this causes a dissonance in your heart. It takes time to heal that. So with a lot of help and a lot of therapists, I learned to enjoy him as he was. The voice never came back. I can tell you today–as much as he is okay. He's really a happy young man now. It's hard for me to say that my baby you saw a few minutes ago is a young man-- that I never stopped wanting to hear his voice. Would that I could.
      What he has taught me besides accepting him is to accept myself, to accept the imperfections in me. I think sometimes the challenges in our kids radiate inwardly our own sense of being imperfect. To be okay with him, I had to accept my own imperfections. He taught me that. Like a little professor, like a little Buddha., he taught me to accept myself without a word, without a single word.
      Maybe the dramatic nature of his impairment taught me more. Sometimes less is more. By the time he was 9 or 10, I stopped hoping he would talk. It

      You don't have to lie to yourself. You can grieve. You can complain. You can mourn. You can go on and enjoy life. But you don't have to lie about how hard this is.

      was hard to give that up. It was very hard... But what we all face is some balance of hope and reality, some going on, and yet loving our child in the moment. You can't do these "floor time" things if you don't love them in the moment that they are.
      It's a fine line, and he taught me somehow how to balance it. A lot of other people helped me along the way. Another reflection on being here as opposed to earlier (in his life). I am glad that I am here. I know what the outcome is. Living not knowing the outcome, that was pretty hard, One thing I would say to you is that is does get easier. I wouldn't say that it gets totally easy.
      You don't have to lie to yourself. I learned I didn't have to lie to myself. You can grieve. You can complain. You can mourn. You can go on and enjoy life. But you don't have to lie about how hard this is.
      Father's Day

      Uncommon Fathers : Reflections on Raising a Child With a Disability
      by Donald J. Meyer (Editor)
      Buy This Book

      If I come back, I won't lie to you. I don't want a kid with autism. I want a son who can talk to me. I have three daughters, and they all talk to me. I love them dearly, and they love him dearly. It is actually part of the healing. Here's some recent pictures. I don't know if anyone else here is like this, but I'll "fess" up to it. For years, I would only keep or put into books the pictures of my son looking normal.
      Well I have finally got to the point that him "stimming" and him looking normal, they are both him. They are both okay, and he is lovable either way. I just got there this fall. I got there because the photographer thought he was a great subject–as he was. It was just wonderful. I always thought that his achievements would reflect on me somehow and that would be the measure of my worth. As a father my son would achieve certain things, and what he did would reflect on me.
      Actually what he taught me was to live for myself and that he himself was fine as he was. In that sense, kids like mine, the other kids we're talking about today, the kids all along the spectrum, in that sense they may be some kind of spiritual force. They make us look at ourselves. They make us accept our own imperfections and the imperfections of others. In that sense he is kind of perfect as he is. Perfect as he is bearing witness to the diversity of the human condition and the human spirit.
      One good thing about being a man is that your makeup doesn't run. It tends to be more on the inside. You hear it in my voice. You don't see it streaming down from my eyes. It's a different expression. I want to end with that. The passions of motherhood are very deep–and it's great being up here (on this panel) and being a part of this really–the passions of fatherhood are no less deep. They are different.
      Somehow in the midst of this as partners we need to find each other. You see at 20 he is still my little boy. See the eye contact. Isn't it amazing? There's the whole family together. We're not a traditional family. I already told you that. I am an Arab. My wife is a Jew. I have two children that are African-American. Anything else–on yes, I was raised a Catholic.
      That's us. They have sustained me more than words could tell.