Source, Barbara's FB 10/19
Note: I met Barbara Fischkin at my very first public speaking event in New York City a dozen or so years ago. She is an accomplished author, and was a successful journalist who traveled the world for her career. I consider her a friend and mentor. Her adult son Daniel has been in his New York Group home since the quarantine began. Like many group homes, Dan's been denied all visits, even from Mom or Dad. Her son contracted COVID and recovered. She has been able to have curb distance visits. This is happening all over the country, maybe the world. People with autism cut off from their loved ones. I can't imagine anyone being able to explain to my three daughters why I am not there for them. My once, twice, thrice broken heart couldn't take knowing they were worried I'd never return, or worse starting to forget me.
Below is an excerpt from a magnificent narrative non-fiction essay she has written about this time and our autism family. Never forget, no matter how we ended up here, how we have treated autism, educated our children, housed them - all of it - at the end of the day, we are the autism family. Take the time to savor her style, her wit, her honesty, her emotion. Enjoy. Kim
Barbara Fischkin is the author of three books of narrative nonfiction and satiric fiction and is currently writing an autism-related historical novel titled The Digger Resistance, some of it set in what was once an Eastern European shtetl. She holds an interdisciplinary Master of Liberal Studies Degree in “Autism Past and Present,” is a writer for City University of New York’s Office of Communications and Marketing, and is a member of the CUNY Disability Scholars Group. As an international journalist, Fischkin covered stories in Latin America, Asia, and Europe and wrote for major publications including Newsday, where she was on staff, the New Yorker, and the New York Times, among many others.
AUTISM in the Time of COVID: Guilt, Histories, and the Village
By Barbara Fischkin
The Covid test for my son came back positive. Great, I told myself, first you gave him autism, now the plague. Dan, 32, has been unable to speak since he was three and a half, a rare case of Childhood Disintegrative Disorder. Doctors told my husband and me to expect the worst. This, they said, was as severe as it gets on the autism spectrum. The worst did not happen. As an adult, Dan has an active life. Still, he is far from cured. Due to his lack of speech and other disability-related deficits, he cannot live by himself or go anywhere alone. He lived with us until he was 22 and then moved to a nearby group home. It is a beautiful, well-furnished house and he has his own large room. Still, it is a group home. I do not know what happened to our once normal child; nobody does. As the spectrum itself grows, it becomes more confounding. For me, maternal guilt comes with the territory and it is irrational. I am still haunted by the long-debunked theory that “refrigerator mothers” cause autism. In my case this is beyond ridiculous. Friends, relatives, and colleagues—and my husband in particular—claim I have an overabundance of warmth, enthusiasm, and passion and, if anything, could tone it down a bit. Still, on bad days the dark side of my brain imagines Bruno Bettelheim, the most famous purveyor of the “refrigerator mother” autism myth, rising from his cremated ashes to crown me the world’s foremost ice queen.
I think: I should have worked less after he was born? Should I not have moved him from one country to another when he was just a toddler? I was a journalist and a writer. But I took him with me. On interviews in Mexico City, to Guatemala to interview orphans, to Panama, Thailand, and the Philippines to catch up to his foreign correspondent father. He rode in a baby backpack and played with my hair. I took him—and a nanny he loved—to a North Carolina writing workshop, because two weeks was too long a separation. Doesn’t this exemplify a warm mother?
I should have played more games with him. Did we have enough puzzles? Too many? I read to him every night, didn’t I? Goodnight Moon. The Very Hungry Caterpillar. The Philharmonic Gets Dressed. You name it, I read it.
I breast fed Dan. Or am I imagining this?
Could a mother imagine she did such a thing, when she did not? I do not think so. But when it is almost 30 years since your child fell apart and you still don’t know why, such thoughts continue to flow. And so, it came as no surprise to me—or others—that when Dan tested positive for the novel Coronavirus, I was sure I had given this to him, too. I based this on circumstantial evidence which would be mortifying, if it weren’t so funny. In the worst of times, and in our memories of them, humans crave humor. If we didn’t, the Holocaust movie Life is Beautiful would not have won three Academy Awards.
So here goes: I was sure I gave Dan the virus because I had my eyelashes dyed.
The woman who does this for me—as she tells great stories about waxing the legs of Lillian Hellman and Beverly Sills—tested positive after my last appointment with her on March 4. New York was still wide open then. She was so sick that she wondered if she was down for the count. I didn’t find out until she revived and after I had spent a day with my son. If I had known, I would not have seen him. This anti-mantra flowed through my brain, until I convinced myself I could push it aside by a list of other ways Dan could have been infected. Three of his group home housemates had it. Did they give it to him? Or he to them? Staff came in and out. My husband and I rode the Long Island Rail Road in early March. We walked and biked the crowded boardwalk in Long Beach on Long Island, where we live. This is the nobody knows virus. Dr. Peter Piot, the director of the London School of Hygiene and Tropical Medicine described in the New York Times on May 26 as a “legend in the battle against Ebola and Aids,” does not know where he got Covid-19.
Dan appears to be healthy now. He has been symptom-free for weeks. He has, ahead of time, lost the 20 pounds he usually sheds in summer when he surfs the ocean. He looks like himself again, tall and solid, fashionably balding with a Roman profile. There do not seem to be any Covid after-effects, as many others—including Piot—report. But. . . can a mother tell such a thing from a distance of six feet? As I finish writing this on June 1, I have not been able to touch my son or even stand in the same indoor room with him since March 17. Seventy-six days. After 49 days, my husband and I were permitted curbside visits with him. It is as if our son were a restaurant permitted to offer take-out, but not delivery. Neither one of us has ever not seen him for this long, even in those vintage traveling days.