This summer I went to see Autism Daddy here in Madison. Autism Daddy is Frank Campagna, a self-described “47 year old neurotypical man with a 14 year old son with severe autism” who has a successful blog about his life as a dad. He has 144000 followers on Facebook. I have followed his Facebook posts because he keeps it real when talking about his son. When I talked with Frank we shared a little bit about ourselves and how old our kids are. He asked, “What is it like to have a son who is 25 years old with autism?” However, we were interrupted, and our conversation was cut short. And I have to say, it was the perfect time to end that conversation. The question caught me off guard. I’ve never been asked that question before. I thought to myself, “oh my gosh, what IS it like to have an adult son with autism?” The only answer I could come up with is bitter sweet.
At the age of 21 Evan “graduated” from High School. Once the transition into adult services happened and the dust settled, I really started to understand my son and came to know him like never before. I realized a lot about who his is.
When they are younger, you are in that crazy state of the hustle and bustle of going to therapy, taking him to school, working on IEP’s, making sure he had appropriate services and making sure all his needs were being taken care of. Everything is a fight. Everything is a challenge. You fight to get services and therapies. There is no time to stop, it’s just go, go, go, go… And then suddenly, it’s done. Then you sit back and think, “now what?” Now is the rest of his life. There was no more school, there was no more fighting for this or that, it was just, “ what are you left with?”
Adult Autism and Acceptance
I realized my son was a man. I had to start treating him like a man and not as a child. So…. I got to know my son. I started to just talk to him. I’d talk and talk even if he didn’t know what I was saying, I’d still just talk. Then, one day I realized that he understood what I was saying. It makes me sad to think about all the times I wasn’t listening to him. Listening to what he was trying to tell me. It was those silent words, the behaviors he would do or the music he would play.
I thought about all the things he had to go thru when I didn’t take the time. I was too busy trying to fix him that. I didn’t realize I needed to get to KNOW him and not fix him. Thank goodness, my son is very forgiving and patient.
If I had that conversation with Autism Daddy today I would tell it’s good. Life is GOOD. I finally enjoy my son. I enjoy have a son who is 25 years old with autism. I’m more accepting and can see what a great man he is. I now smile when I think about when I was sitting and watching his brother’s soccer games in high school , Evan was watching Beauty and the Beast. Today his peers are graduating, getting married and having babies and Evan is still watching Beauty and the Beast. He really hasn’t changed that much, but I have.