'Much Richer Inner Lives Than We’ll Ever Understand'

Editor’s Note: This article previously appeared in a different format as part of The Atlantic’s Notes section, retired in 2021.

The latest contribution to our ongoing reader series comes from the proud grandmother of a kindergartner with autism. She agrees with me that it takes a village to support children and adults on the spectrum:

Awareness and diagnosis are a priority for the family. There are too many children falling through the cracks, so my daughter has volunteered to start a community support group for parents who are concerned about their child’s development. She has found many parents reluctant to accept a label, and she hopes to turn their fears into action.

I told her that my wife and I embraced the label and found solace in knowing the challenges facing our son and what we could do to help him. More important, Tyler proudly calls himself an Aspie. “Like blue eyes, I don’t talk about how I have blue eyes,” he says in a video interview with Autism Speaks (embedded above). “I have autism. That’s it.”

This next reader and Twitter friend writes about the rich inner lives of people with special needs, including autism. (Some names and details have been changed to protect privacy.) It’s painful to read about this particular kind of heartache:

For two years, Frank has wanted to move out of his group home to a new place. Although his current digs are clean and safe, he’s gotten bored. When he saw our children move into college dorms, he wanted to do the same. He thinks of college life as what he’s seen on Beverly Hills 90210.

We finally found him a nice new home close to his current digs. He’s had dinner over there. We’re attending to the formal details. He’s been packing bags in his room.  

In the house he is leaving, Frank lives with several other guys. He is closest to Jon. Jon cannot speak. He communicates by scribbling on scraps of paper and excitedly handing them to staff members who then try to decipher what he has written.

Frank is probably his closest friend. He’s called him Jon-Jon for a few years now. Frank has also been swiping Diet Cokes from us for years. I used to get annoyed by this, until I realized that he and Jon were sitting together, sharing the loot.

Jon is heartbroken by Frank’s pending move. He’s weeping, and doing some other manageable problem behaviors. A staff member called our house the other night, hinting around to see if we would reconsider the move. I won’t do that. Frank is an adult man entitled to make his own choices. He wants a change. I’m not going to pressure him to miss a valuable opportunity. But like many life changes, it brings someone else heartache and loss.

These men have much richer inner lives than we’ll ever really understand. They mourn long-ended relationships with relatives, housemates, and friends who’ve died, moved away, or slipped out of their lives. They are expected to bear these losses with a child-like smile, and not to get overly frustrated when we don’t understand what they are trying to tell us.

In this case, though, the message could hardly be simpler: I will miss you. Do you really have to go?