Autism: Understanding From the Inside

May 2, 2014

We were driving to the store when my typically reticent son broke the silence. “Do you regret having me?” he asked. He knew I loved him, he said, but felt responsible for my abandoning my career when he was diagnosed with autism in 1993.

I responded quickly, hoping to quash his festering doubts. I have no regrets, I said. In fact, I told him, I am a better person because of you. Whereas I used to view the world in black and white, I now see shades of gray. Most importantly, I appreciate — celebrate — accomplishments that would be minor for “typical” peers but are gargantuan for you.

His question plagued me and later prompted one of my own. Why did he ask me if I regretted having him? Was it something I had said or done? Though he assured me it was something he had seen in a video, I’m skeptical. I fear it was a lifetime of seeing or hearing he is different; that some of his behavior is unacceptable for reasons he may not — or may — comprehend.

As he’s grown, Jack has become more self aware and verbal about his feelings. When he indulges my curiosity, I probe. I’m hungry for insight, for it is my ally in my endeavor to help him live a fulfilling life. Treading lightly, I ask whether he is a loner by choice or default. Does he flap his hands because he is excited, stressed, or just over-stimulated? Why does he watch videos with the volume on high but avoid bowling alleys because they are too noisy? How can he remember eating pickles with his great-grandmother as a toddler but forget to brush his teeth as an adult?

I welcome firsthand experiences from authors like John Elder Robison (“Look Me In The Eye”), Kristine Barnett (“The Spark”), and Ron Suskind “(Life Animated”). I value perspective of friends whose sons share the same diagnosis but display different strengths and challenges.

With one in 68 diagnosed with autism, many are also hungry for insight. A friend recently remarked that those of us with adult children have much to contribute. So when I asked several compatriots what they would like readers to know about autism, they offered the following explanations and observations.

Peg, mother of Jim, 20, suggested this analogy: “Grandma has a Ph.D. from Harvard. She is brilliant. She suffers a debilitating stroke that affects her language output and some behaviors. She is still brilliant and understands everything, yet struggles to communicate her wants and needs. You try to have a conversation with her but she can’t really talk.” Because it is too much work for both parties to communicate, Grandma isolates herself from social interactions.

“I often think of Matthew (25) as being under water,” says Mary. “He knows there are conversations happening above the surface but he can’t make out what they’re saying. He may come up to the surface briefly and be fully exposed to the conversation and the light and loud noises that are there, but then he returns to his underwater world. I try to be patient when he comes up to the surface, saying something that has nothing to do with what is going on or, most commonly, when he says something that is polarizing and offensive.”

Heather found parents of kids with special needs were often grieving, rather than enjoying life. She made a choice to laugh every day. She hired help for Ben, who has limited language and social skills. “I can’t do this myself,” she says. “If Mama goes down, the ship goes down.”

Because Ben requires constant supervision, Heather must accompany him to the public restroom. She explains to curious strangers, “This is Ben. He is 16 and has autism. We are doing the best we can. We need to stick together.” Though strangers are rude on occasion, Heather’s objective is to act with dignity, respect and kindness. She cannot control Ben or others, just herself, she says.

Though people with autism are considered to have an “invisible disability” I have often spotted little people eyeing my son with a quizzical expression. They notice he avoids eye contact; bounces a bit like Tigger; and speaks only when he chooses to, often using an outside voice while inside. How do children learn so early in life what constitutes “normal behavior” or appearance?

Dani, mother of 8-year-old Leo, says kids are naturally accepting but they pick up on cues from their parents. Acknowledging it’s a common human experience to be a little uncomfortable about that which we don’t understand, she insists we can get beyond that.

“One parent in our community told his kids Leo ‘is just a little different.’ That actually was very unhelpful, as kids often see ‘different’ as bad or something to avoid,” she says. In fact, like other kids, Leo likes to have friends, play video games, go swimming, and eat pizza. “The difference is Leo has a hard time organizing his thoughts into words.”

Dani suggests parents can model kindness and show their kids that those with special needs have value. “Our son actually has quite a lot to teach others,” she says. “He has a lot of joy; he accepts everyone for who they are; he is honest; resilient; and quite heroic in the face of some of the struggles he faces every day.”