Tears were streaming down her face as she approached me. “I wish my husband had been here, I just…may I hug you.” We embraced, and the lady I’d just met took a few minutes to tell me how difficult things had become in their household because her husband simply was refusing to deal with the realities of having a son with autism. I had just finished giving a talk at a fundraiser for iCan House, a non-profit that assists persons with social skills difficulties, such as those normally associated with persons with autism. For more on the inspirational work being done by founder Kim Shufran and her team you can go to www.icanhouse.org.
As the woman spoke to me it was clearly evident just how emotional and taxing their life had become. Her husband would not accept their adolescent son’s autism. She explained that he didn’t recognize that their son wasn’t acting in a certain manner to be contrarian, instead he initially insisted on disciplining the child as though he were neuro-typical. In other words he was determined to ”straighten the boy out”. Eventually the father distanced himself from the son and the mom has been left to do the heavy lifting by herself.
This story caught me, somewhat, by surprise. Most of the men I know (personally) who have sons with autism are involved and exceptional fathers. But, as I have learned, there is a significant segment of fathers who do not handle autism, especially in their sons, very well. If you consider the expectations our society places on what it means to “be a man” then maybe it shouldn’t surprise anyone to hear stories of men who have problems relating to a son with autism.
Having recognized, and allowed for, this societal expectancy I have this thought to share with those troubled dads, “It’s not about you!” It is about that young boy who, despite behavior that you may not understand and that might (at times) defy conventional norms, really needs you in his life, not on the periphery but actively involved. To abandon your station and leave the daunting task of raising a son with autism to his mother is not only wrong but, frankly, it will shortchange you.
I speak of this from experience. When Julian was first diagnosed (at age four) I had to go through periods of adjustment and acceptance. At first I wanted to “make him understand” what was going to be proper behavior and what wasn’t. Any son of mine was going to comport himself in a manner that reflected positively on our family and me. Note the latter part of that, me. I was concerned about what it would say about me, as a man, if my son were perceived as “different”. Autism was not in my playbook for my first-born son’s life. I’m certain there are fathers out there right now feeling this way. Again, “It’s not about you!”
As almost always has been the case, in major transformative stages of my adult life, Martina (my wife) played a lead role in getting me to where I needed to be emotionally and logically. During especially difficult times she would remind me Julian was not intentionally acting out, his lack of conforming to my rules was not a challenge to my authority. He had autism, it was different, I had to accept this. I had to learn, it wasn’t about me.
I recall one incident when he was about five or six, Julian had a major meltdown; tearing his room up, ripping things off the wall, breaking his own toys. This had become regular theatre in our house. I was done, it was going to stop. I was ready to really take matters “into my own hands.” Martina interceded; calmed and sat me down, then presented me with a small stack of literature about autism. “You really need to read some of this and think about things.” She knew that I’d resisted educating myself, in detail, about autism. At that point, I’d yet to realize it wasn’t about me.
I heeded her advice and as I came to terms with my son’s autism it opened up a level of connection with him that I’d, previously, thought impossible. Over time we came to rely on each other, he would let me know what he needed, how he was feeling and I always assured him that I was proud of him, loved him without conditions and would always be there for him. I understood it wasn’t about me.
To those fathers feeling disconnected and thinking this isn’t what you’d planned for when your son was born I ask that you consider your child. Imagine what his world is like. He may not ever say it, he may not be capable of expressing it, but he wants your guidance. I promise you it is not your son’s intent to make you appear less of a man because of his differences. As for the “looks” you’ll receive in public, especially as he gets older, those embarrassing moments. They don’t matter. It’s not about you and it sure isn’t about the perception of others.
You’ll have to suspend most of your notions of traditional manhood and find ways into his world that allow you to nurture and support him. Easy? Not at all, but well worth the effort. The modern philosopher and writer, Robert Brault wrote, “You will find that if you really try to be a father, your child will meet you halfway.” It may not be the usual, you take one step he takes one. It might be, you take five and he takes one, but you will get there. Just be mindful, it’s not about you.
At eighteen, I look at Julian and realize that my son, in his own way, is going to be one helluva man. You see, it’s really all about him.