By Peter Timpone
I had never heard of autism before the diagnosis. The doctor handed us a piece of paper, and that’s all the information we had. It immediately put us in crisis mode. Everything I read at that time made it seem like he would never be on his own, and there was a checklist of bad things that might happen.
It was a lot. Suddenly our calendar was full – people were in and out of our house. We tried a lot of things and alternative stuff with him. There was a lot of junk science – do the diet, don’t do the vaccines, try hemoglobin treatments. We were preparing for the worst because nobody told us he was going to be okay. It would have been nice if someone had said to me, ‘he’s going to be okay. It’s going to work out.’
We were caught in a trap of trying to rise above the diagnosis. We actually just needed to work in it, instead of trying to get out of it. Your child will continue to grow. In the end, it was a lot of caring, supportive people who helped him grow into the person he is.
Autism added a strain and stress on the family that we didn’t recognize at the time. We didn’t take time to focus on ourselves, our marriage, or our individual selves. There are things that need to happen for him, but you need to focus on other aspects of your life, too.
As a parent, you’re always projecting out what your child needs. And I can say I was wrong many times, but I continued to do it out of love. We have to have faith and confidence that our children are doing something for themselves. They know their bodies and minds and what they need.
In fourth grade, my son would just walk around on the playground, and he wouldn’t be socially engaged. We thought we’ve got to get him engaged. How are we going to do this? We were making decisions without asking him. Eventually, someone asked him what’s going on. And he said, “I just need a moment alone. From being in class, I just need some time.” He needed a reset, he wasn’t being anti-social. Even now as an adult, he needs that -- a hike or a bike ride after something stressful.
My son excelled academically and got a good education. He locked into Latin. In middle school, kids didn’t want his help because he was autistic. By his senior year of high school, he was teaching Latin to freshmen. Middle and high school were hard socially, but at college, he finally found his people.
I don’t think people know that a lot of autistic people are brilliant. We have these amazing brains and wonderful people who can bring great thinking or great art to the world. Albert Einstein was autistic, but we don’t talk about him that way. We don’t talk about the fact that he wore the same thing every day. We talk about how he changed how we see the universe.
I firmly believe we should be more accepting of who people are and how they function. We force people to fit in to society instead of society accepting them. At one point, we had this talk about teaching my son to stare to give the impression that he’s listening. We had to program it, and “look at me” turned into creepy. So, we gave up on that. It’s a western social norm that doesn’t fit.
There are a lot of people who could use accommodation – like a movie night with the lights higher and the sound lower. It doesn’t have to be autism night. Adults on the spectrum may need support for executive functioning, like did he turn off the stove. Or help understanding the social aspects of body language. There are young people who don’t have autism and need coaching on relationships or how to take care of the car. Humans need help sometimes.
Peter Timpone is the Director of Information Technology for Aspire Living & Learning