The Washington PostDemocracy Dies in Darkness

My daughter went off to college, and her autistic twin brother didn’t

Courtesy of Shelley Stolaroff Segal

It’s hard for me to believe that my daughter’s first year of college is almost over.  What’s even more incredible is that her twin brother and I didn’t fall apart when she went away. (Okay, that’s not true, I fell apart.)

Josh is on the low-functioning, non-verbal end of the autism spectrum. He also has severe epilepsy. My daughter, Jordan, has spoken for him, advocated for him and adored him since they were born. She’s also loved him longer than I have, because as she used to remind me years ago, “I’ve known him nine more months than you, Mommy.”

At the beginning of her senior year in high school, I dreaded her impending departure with such force that sometimes I had to pull over on the side of the road just to breathe. What would I do without her?  She had been my light during the dark years. And what would Josh do without his “sissy”?

The day she left was as gloomy as I’d feared. As we loaded her laundry baskets and boxes into the car, it was obvious that Josh didn’t understand what was happening. Jordan did what she always did when she was younger. She smiled extra hard and fluttered about him like a demented butterfly. “Joshie!  I’ll see you soon, buddy, and we’ll go swing together!” He smiled at the idea of swinging, but didn’t catch on that his sister was leaving home. Jordan held onto him and kissed him goodbye, and then we drove away.

After we arrived at her dorm and unpacked her belongings, my husband and I lingered for a while. We took her for ice cream and made idle talk until there were no more excuses to stay. It was a quiet ride back home, and when we finally made it I fled to a dark room and grieved the way I did when I lost my father. The next day I plastered on a fake smile for Josh, and whenever I had a spare moment, I hid with a box of Kleenex.

How on earth could be my son be feeling? Abandoned? Lonely? Would he and his sister really Skype with each other? How would my kids ever handle this separation? In my wretched state I cursed that he couldn’t talk and share his anxiety with me. I cursed his lack of cognition and his laundry list of vulnerabilities. I rued the day I gave birth to twins, because one would be able to go away and live an independent life and the other would . . . what . . . suffer? But was Josh really suffering?

“He lives in the present, Shelley,” my husband said. “Stop worrying so much.”

I waited for the emotional fall-out, particularly when Jordan called the first time to speak to her brother. Actually, she didn’t speak. She warbled a song that hurt his ears as much as mine. But that’s all that hurt. Truly. Josh smiled when he heard Jordan’s voice, and they connected the way they always did; in an undefinable manner that makes me eternally grateful. I remember when they were very young they would pause and stare into each other’s eyes and look through one another so oddly that it made the hair on my arms stand up. I guess that extra nine months together, in my belly, really did give them an edge. They share a special language that belongs only to them.

So basically, I didn’t have anything to worry about. (Of course, if I didn’t worry I’d worry.) I started breathing again. It was going to be okay. I didn’t have to pull over on the side of the road to sob anymore. And I was ashamed for thinking even for a second that these kids wouldn’t work it out. I’m still trying to come to terms with the fact that Jordan’s in college and her twin brother isn’t. But at least I know that it bothers me more than it bothers Josh. And as Jordan used to say so many years ago, “He’s happy Mommy, and that’s all that matters.”

Shelley Stolaroff Segal is a playwright, actor, composer and essayist living in Greensboro, N.C. “My Son,” her play about autism and race, premiered in New York City and was presented as a TED talk at TEDx East. You can find her at

Like On Parenting on Facebook for more essays, advice and news. You can sign up here for our newsletter. You can find us at

You might also be interested in:

Teaching a child with autism how to deal with authority figures

107 days until my daughter graduates from college. Here’s why that number is significant.

Raising a tween who has autism