Saturday, February 2, 2013

Mourning: New Beginnings

Autism dads run. If you move in certain circles, know certain people, read certain books-articles-blogs, you know this: autism dads run.


Autism sucks. I don’t mean this in a colloquial, loose way of speaking. I mean this in the way that black holes suck. Black holes—dying stars—pull light, space, time, and dreams into a single hypothetical point and they crush everything.

Some dads can’t hack it. Assholes. Narcissists. Infantilized man-children. Weak.

Is this a valid narrative? Sure. But it’s not the only one.

Why do they run?


I’m writing this in a hotel room in downtown Milwaukee. My wife checked me in yesterday because she could see—even if I could not—that I needed to get away. To get away from the 3-hours of sleep a night. To get away from random screams that could be words but for some neural-gastrointestinal-immunological quirk. To get away from the hours of my son literally crawling the walls as I sit in impotence and despair. To get away from autism, even if only for two days and two nights.

Last night I did not work. I did not read the vast list of books I live in terror of not finishing before my PhD exams—a valid fear as I scramble to teach, sleep when I can, and care for my “severely autistic” (the child-psychologist and pediatricians’ term) child.

I watched TV and I cried.

I cried at Hallmark commercials. I cried at the saccharine Disney adverts. I cried at the Food Network. My wife called me and thought I kept dropping the call because I could not speak.

I was mourning.

Maybe this is why autism dads run. At work, at home, within our larger families, within a culture of “Kick-Ass Autism Moms,” we are not allowed to mourn. It took me a random staycation and television-induced breakdown to realize this and to wonder: “what does it mean to mourn?”


Mourning is about transition. It is a movement from one state of affairs to another that is somehow less. It is a period often governed by rules and customs. This periodicity, these structures, are seemingly designed to help aid the transition.

It is sanctioned grief and it is necessary. It gets one through.

But there is no mourning with autism. Especially not for fathers.

Ours is a culture of compartmentalization where male anguish is not met with compassion but with scorn.

This silences us.

Our children still live. They stand in front of us. They are different, but they are there. But our hopes for them, our dreams of righting the elisions and mistakes of our fathers, of being more for our children, slip away as we sit in psychologist or pediatrician’s office.

But we mustn’t speak of this.

Autism culture—rightly—focuses on concentrating not on who your child could have been, but on who your child is: difference not deficiency. It is a culture of optimism, a culture of fierceness that fights for our children’s recognition by schools, society, our larger families. I believe in this culture, but I wasn’t ready for it. It took me time. I needed to mourn, to release the anguish that comes whenever our visions of our lives create dissonance with the reality of our lives.

There are no mechanisms for men. We cannot speak with one another. We cannot speak with our larger families. We feel racked by guilt as we look at our wives and just can’t pull it together, can’t be strong in the ways they need us to be.

We self-destruct.

Drink. Smoke. Cheat. Scream. Run.

We need to mourn. We need to talk. We need to be allowed to feel what we feel so that we can be who we need to be and who we want to become. Denying, silencing, being normative—this helps no-one.


Mourning is about transition.

I’m transitioning now. That’s what these words are about. I will move on. I will become a “Kick-Ass Autism Dad.” For my autistic son, my neurotypical son, my wife, my larger family, I will move forward. For other autism dads, I will move forward, will say the things that we shouldn’t say so that maybe one more dad can hear another voice and can mourn as he should, not as permission to live in despair, but as acknowledgment that things are different than we first imagined.

This blog is an attempt, then, to transition and to help other autism dads transition, to encourage them to speak, to feel, to mourn. I do this in the hope that we can stop running. I do this in the hope that we can let go of our previous pictures of fatherhood, and become the loving, strong, fierce fathers that our children and families need us to be.


  1. I honor your mourning. Your honesty, vulnerability. The beauty in your letting go. Thank you. And namaste. <3

  2. I am in awe of your honesty and courage, Adam. What you are saying seems universal to me and goes beyond autism. It is such a blessing that you and Jamie can describe these very difficult things so well. It has really helped me in working with special needs children and their parents. Thank you!!

  3. Thank you for typing and putting into words what so many of us feel.

  4. Blessings to you and your family as you grow into becoming a "kick ass autism dad". I think you're off to a great start! Each day is a fresh start...a new beginning. Let yesterday go because you can't change it now......

  5. I just sent this to my husband. We had one of" those mornings". And I think this is just what he needs to read. BTW. YOU are a kick ass dad!

  6. Sitting here in tears. You are amazing.

  7. Bless your heart, yours and your whole family's. My grandson, here, with me is autistic. We went into the kitchen to dance at my son's wedding as the band and the people were too loud for him. He was 3. He is 7 1/2 now. He is a happy boy. We have learned to make adjustments for him, and he is making progress. He will always be autistic, of course. That is who he is. Any new place is trying. He prefers the same things, but we must do new we go slowly and aware of his needs. He has a good life. So do we. It is a different one from what we expected. My daughter never expected her husband would leave, for one thing. But my husband and I live with her and we homeschool this son and another one. Life is a joy.

  8. Kudos! Most of the "manly men" of this world are no man at all. Real men cry. Real men feel. Real men will do whatever it takes for their family. We need more real men in this world. It's nice to know my husband is not alone.

  9. Adam- I am a professor in Indiana and the Ed Director of the Indiana Writers Center and a mom to a kiddo with severe CP (also hate that word, severe). My dissertation was on the joys of being a special needs moms although certainly I have done my share of research and living the challenges. A colleague and I are now creating an edited anthology. Someone submitting to the text shared your blog. I want to begin talking with dads. I do not see an email on this post site. Could you possibly send me an email at I would love to speak with you about ideas and perhaps even collaboration. thanks! Darolyn "Lyn" jones