“Sometimes I’m grateful for his autism. That may sound like a terrible thing to say, but in some ways I think, I hope it shields him.” Mom continues, “He doesn’t seem to notice that he doesn’t get invited to birthday parties anymore. She goes on to talk about how her son eats lunch alone in the school cafeteria. “It’s more heartbreaking to me than it seems to be to him.”
I identify with some of what that this mother has to say about her autistic son, in particular the isolation, and questions about how much her son really notices. My autistic son Jimmy can be hard to read as well. More often than not, I can only guess what he’s thinking or feeling about his lack of social interaction with the outside world. Does he care? Is he lonely?
Living in an isolated “autistic bubble” is not at all unusual for autistic children and adults. Certainly, the extreme isolation of autistic people is well documented by research. For instance, one recent study found that 40% of young autistic adults never saw friends; and half never were invited to activities. In another new study, parents reported their autistic children were sometimes or often left out of activities by other children. Some research has linked isolation to the fact that autistic children may be viewed as “weird or odd.”
Why the bubble? For some parents, it’s almost an instinctual response. They know how mean and cruel the world can be to those who seem oddly different. Rather than a loving push to experience new situations and meet new people, parents retreat and protect. Certainly, part of the challenge, according to Paul Shattuck, one of the authors of the aforementioned studies, is the difficulty autistic people have “navigating the terrain of friendships and social interaction.” But it’s important to remember this difficulty is a two-way street. Those of us who are not autistic must learn to do a better job reaching out, drawing out, listening, and nurturing relationships with those whose minds may work differently but nevertheless are anxious to connect both verbally and nonverbally.
Loneliness comes in an assortment of shapes and sizes. For example, there’s emotional loneliness, social loneliness, and collective loneliness, meaning the feeling of not being valued by one’s community. And researchers now know that random human contact is not enough; rather the nature of human contact and who it’s with are both critically important.
In all honesty, there are times when Jimmy would much rather be by himself, like me and many others. But as with many other autistic adults, he has a healthy social appetite. When our family is not around, does he feel lonely? Does he have the opportunity to interact with a wide variety of people, and ask the questions that build up inside of him? Even after some forty-two years of raising my son, I’m still not sure.
Please note: I just finished a book that applies the latest research on autism to our family’s journey over more than four decades. My son Jimmy is a middle-aged adult on the autism spectrum. The voices and perspectives of my son, my wife and two daughters as well as friends and professionals are included throughout. It’s a real, uplifting, and remarkable story; one which I have wanted to share for a long time. Both the print and Kindle version of this book are now available. Profits will go to Linwood Center, an internationally recognized program whose mission is to create extraordinary lives for children and adults with autism (see https://aJimmy.com).
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