I am an individual with a clinical diagnosis of Autism Spectrum Disorder. It seems that I do not appear to be autistic, because when I disclose my diagnosis, the response is almost always someone saying that I donât look like I have autism. The impact of autism has been significant in my life. I spent just over four decades feeling disconnected from the world around me. I was able to approximate expectations, but I didnât really understand. It was like being an actor in a play.
My family lived in Korea for the first six years of my daughterâs life. I thrived in Korea. Many of my personal deficits were not obvious to the people I worked with. The environment enabled me to easily meet the expectations that the Korean people had for foreigners. My daughter learned to speak Korean and attended a nursery for children her age. This may have made some of her deficits less obvious to us.
Paul Tutherow and his daughter Lisa.
After our return to the United States in 2012, she started kindergarten, where her deficits were apparent. She didn’t really play with other children. Even when her cousins were around, she would only play near them, but not engage with them. During this time, we were told she might have autism.
As I began researching autism, I wasnât sure why anything I was reading wasnât ordinary. This is because the materials were literally describing me and the deficits I had lived with my entire life. A therapist who was familiar with autism informed me that in his opinion I had autism, but he wasnât qualified to diagnose. Following his suggestion to pursue a diagnosis, I was diagnosed in 2014.
My daughter was 11 when her mother moved out in 2017. Her mother is still around, but the day-to-day care, stability, and well-being of my daughter is on me. I am an autistic single father of a child with autism.
Even though we both have autism, we have different challenges. Still, there are many things that I can identify with, and sometimes I believe autism makes it easier to relate to my daughter.
One way we are similar is our very candid nature. We are so plainly honest and direct it can get us in trouble. Shortly after moving back to the U.S., a neighbor visited the house to give us some clothes her granddaughter had outgrown. She was not aware that the alcohol and diluents in her perfume had evaporated and the oils were rancid. I am sensitive to odors. After she left, I commented to my mother-in-law, âShe smelled horrible.â In hindsight, it wasnât appropriate. It wasnât until a week or two later that I understood why.
The next time our neighbor visited, my daughter was extremely excited. She ran up to the neighbor and sniffed, before announcing, âI donât think you smell horrible.â When the neighbor asked what was going on, my daughter followed up with, âMy father says you smell horrible!â My mother-in-law tried to make it seem like my daughter didnât know what she was talking about, but I admitted my fault and apologized.
“Even though we both have autism, we have different challenges…and sometimes I believe autism makes it easier to relate to my daughter.”
An example of how we are different is our sensitivity to sounds. When my daughter was younger, she enjoyed making noises. She would hum, click, squeal, and squeak for hours at time. I, on the other hand, much prefer a quiet environment and become irritated by extraneous noise like that. I had to make deliberate choices about how I coped with the noises she was making. I never told her she had to stop. Sometimes I would ask her to go to her room if she wanted to make those noises, other times I would leave the room myself, and eventually, I learned to tolerate the noises she was making.
Many years before my daughter was born, I worked for a business technology lab, helping students with their programming and computer course work. When a student asked me for help, I very rarely took their seat at the computer, especially when what they wanted help with was the objective of the assignment they were working on. Instead, I would ask them questions about where they were and then help them find the resolution themselves. This might mean explaining a concept in simpler terms, but it was always the student sitting at the computer and their hands doing the work.
I use the same process now for my daughter, except it isnât limited to programming and logic. It is almost everything. I expect my daughter to do her daily tasks, and this is how I help her â by guiding her, rather than doing the work for her. There are some things she does well, while other tasks are challenging. I try not to be critical. I try to encourage her and offer guidance or an occasional reminder, but I expect her to complete the tasks on her own.
An example of how this worked was finding the right bedtime. In Korea, she stayed up late; when she was with her cousins, she was expected to go to bed earlier, but she couldnât fall asleep. I told my daughter, âI expect you to get up and be ready for school in the morning. Not drowsy or tired, but up and ready. If you do that, you can stay awake as long as you want.â She experimented with different bedtimes, and within a week or two, she was going to bed, getting up, and getting ready for school independently.
This example may not work for everyone, but my advice is to give your child the opportunity to try to do something for themselves. It might take a while. Be supportive, be ready to offer guidance, and enable them to succeed.
One of the struggles that is on my mind lately is, “How is my autistic past having a negative impact on my daughter’s future now?”
As a young adult, I was entirely frustrated with the challenge of making and maintaining friendships. I remember one day I just said to myself, “I give up. I don’t like people and I am not going to try.” I was resolved to go to work, come home, and be left alone.
Now, approximately 30 years later, when I look at my peers, I see that parents are friends with other parents, and their children with each other. These social opportunities are just there for them. It is something they may take for granted. Because I never had friends, I don’t have married friends with children. The decision I made 30 years ago to give up on relationships has led to fewer social opportunities.
Encourage your children to build friendships, to push through the challenges of awkwardness and social deficits. Create positive experiences for them. Relationship skills may seem unnecessary to people with autism because the practical purpose isnât apparent, but having friends is rewarding and the benefits literally last a lifetime.
Because we are both autistic, my daughter and I navigate this challenge together. I donât understand some of the weird things people say and do, and when she asks about them, all I can say is, âI donât know, I donât get it either, but I can help you understand what they expect.â
This article also appeared in the Winter 2022 issue of Spectrum.Â
About the Author
Paul Tutherow Jr. was a witness to the era of blaming parents for developmental delays and social deficits in the 70s and 80s. When Paul graduated high school, he felt broken, something he blamed his parents for. In 2014, Paul was diagnosed with Autism Spectrum Disorder, a label his parents had avoided due to stigma. With new insight into his deficits, Paul and his family have begun to heal. Today he is an advocate for early intervention, parent education, and community representation, so that today’s generation of autistic individuals can look forward to better outcomes.
Paul is a former chapter facilitator for the Autism Society of North Carolina. He has offered “Magic for Fun & Social Skills,” a workshop that teaches children magic tricks as a structured, appropriate social interaction. He is also a board member for ABC of NC, a child development center, providing services and support to individuals with autism.
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