To the Dads We Know of Children with Autism

I tend to spend a good portion of my days reading. I read newspapers not only from all over the country, but from all over the world. I like perspective. When I want to know something about any given topic, I try to read as much as possible. Naturally, I read ferociously about autism, as well every other diagnosis that has been made regarding Tommy. Last week, I met with several physicians from Mass General Hospital for Children from both immunology and pulmonary. We talked in-depth about COVID-19, immunodeficiencies, and of course, Tommy watching the Space X launch the previous Saturday. One of the doctors suggested several peer-reviewed articles to read regarding the research they are doing right here in Boston pertaining to COVID-19 and the inflammatory disease afflicting some children. It sent me down a rabbit hole…what else is new? That discussion and the reading afterward made my heart hurt for the mothers and fathers of the children who have been ill (fortunately, all of the children at MGHfC recovered and went home, but not without putting up one hell of a fight).

I found myself reading off topic to distract myself from the anguish. I started reading peer-reviewed articles published by The National Institutes of Health regarding fathers and autism. A study published in 2017 entitled “The Experiences of Fathers Who Have Offspring with Autism Spectrum Disorder” caught my attention. Tomorrow’s Father’s Day, so I figured I’d share a few of my thoughts in honor of the day.

First, I’ve noticed that most articles published or even websites on autism tend to be from a mother’s perspective or written with a motherly audience in mind. That doesn’t seem fair. I’d like to think I do all the work, but I don’t. In fact, the fathers I know who have children with ASD, including my husband, share the load with their spouses. They are at Special Olympics jumping in when meltdowns are erupting. They literally jump in the pool at birthday parties because even as our children are nearing double digits in some cases, swimming is not only an overload, it’s dangerous. They follow their sons and daughters off into directions away from other party-goers or guests. They coach t-ball teams. They carry their kids to bed, still. They talk about the Milky Way galaxy colliding with the Andromeda galaxy in a few billion years. They drive their kids to NASA to watch them in pure glee stare at all things space. They build swing-sets and trampolines to indulge in whatever it is that makes their precious child happy. Some of the things Eric just does may be because I don’t want to, but most things he does is because he’s great at it.

One of my least favorite things to do is to meet with neuropsychologists and psychiatrists, which almost all children with ASD meet with at least once every year or two. I also have a very difficult time with IEP meetings and school Family Meetings. Don’t get me wrong, every professional who works with Tommy at his school is dynamite. But I still wrestle with my heart and head not matching up. I know this is not my fault. I will always feel like it is. That’s incredibly difficult to admit. Eric is phenomenal in those meetings. I’m always in awe of Eric’s advocacy of not only our son, but on behalf of all children with special needs, whatever those needs are.

Back to the NIH article- the findings of the study I read indicated that research exploring parents’ experiences of having children with autism underrepresents fathers. There isn’t enough research and data to date to explain why. However, what research has shown, is that fathers report very similar experiences as mothers. After I read the findings, I went back to the article to re-read some of the responses participating fathers gave. Each of the responses were so raw with emotion, fears and complete honesty. Sometimes I think I think and feel too much, especially when it comes to Tommy. Turns out, the way I feel is perhaps the only thing that isn’t atypical about all of this (side note: if you haven’t watched Atypical on Netflix…get on it).

My point is this, research can tell us that mothers and fathers have similar experiences, they have similar worries, heartaches, stresses and even joys. That’s all well and good. But I don’t need an article to tell me what I already know. The Dads of kids with autism that I know are Super-Heroes. For each of these kids in my life, when he or she looks into their Dad’s eyes, that thousand mile stare briefly goes away and they absolutely light up. They see the Super-Hero, too.

Happy Father’s Day to the Super-Hero Dads in my very small autism inner circle.

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