As a parent of two children with autism, I have a decade and a half of intense experience with autism. What I did not know until recently was that my experience goes much further than that.
Our story is pretty typical of many families with autism. Our son seemed to be developing relatively normal. He had the right amount of words at the appropriate stages. Then everything disappeared.
Our doctor’s first thought was hearing loss. After ruling that out, our son was sent to a developmental pediatrician. After a long day of tests, the doctor entered the room with a box of tissues. Our son had autism.
At the same appointment, we were told about a sibling study being undertaken to help diagnose autism earlier. We put our younger daughter in the study and less than a year later, she had her own diagnosis of autism.
Both of our children are on the severe end of the spectrum and both are nonverbal. Each has their own struggles. Our son is a runner and our daughter is aggressive. Things became difficult enough that both of them now live in a group home.
During our autism journey, some interesting things would happen. I would wish that someone would close an open door and one of our children would close it. Our daughter would line up toys and at the end of the day while cleaning up, I would position the toys in certain ways. Our children insisted on routine and I found as much comfort when the routine was followed and discomfort when it was broken.
As I talked to people, who had what was then called Asperger’s syndrome but now is high functioning autism, I found many things in common. From childhood to adulthood, I have never been able to do things in moderation. When I have interest, I put my full effort into it, often beyond what is appropriate. Lacking social skills, I have observed and memorized what others do when interacting with others. I long to be by myself and surrounded with the things that interest me.
My wife saw and understood these behaviors long before I had made the connections. With her encouragement, I went to see a psychologist and received my own diagnosis of autism.
My first thought was that I could not wait to tell my children with autism. The next time I picked them up from the group home, I told them my news and my son reached up and shook my hand. My nonverbal son was welcoming me to the club.
The reaction from friends has been mixed. Some have acted as if the recent diagnosis means that I just came down with a bad case of autism. The truth is that I have always had autism and the diagnosis helps to explain much of what I went through in my childhood.
What does this mean for me as a parent of children with autism? I had always wanted to speak to a high functioning person with autism to try and understand what my children feel. Now I am that person.
I am still early in my journey of being aware of my autism, but I believe that this diagnosis will help me to be a better parent to both my autistic and neurotypical children. I now have categories in which I can understand my thoughts, feelings and actions. I do know that it has brought me much closer to my children with autism.
Stephen Bedard is married to Amanda and has five children, two of whom have autism. He is a pastor, teacher and author. He has written a book called, How to Make Your Church Autism-Friendly. You can find out more at his website www.stephenjbedard.com.
This article was featured in Issue 42 – Autism: Fighting the Stigmas