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AUTISM in the Time of COVID: Guilt, Histories, and the Village

Barb and Dan 2
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.
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AUTISM in the Time of COVID: Guilt, Histories, and the Village

Kim

By Barbara Fischkin

GUILT

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 MoonThe 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.

His movements and his usual activities have been severely curtailed as part of Covid-related New York State emergency guidelines. I believe these guidelines create a false sense of safety and discriminate against the disabled who live in group homes. Modified house arrest, I call it. No visitors inside, except for the staff who care for him and a nurse who comes once a week. Dan cannot leave his group home or his yard to go any farther than a short neighborhood walk with an aide. The state says these restrictions are needed because autism and other developmental disabilities often come with behavioral outbursts and sensory overload. In short: the state does not think Dan will keep a mask on in public. It thinks he will run close to people and cause a fuss, otherwise known in the worst of autism jargon as a “behavior,” or a “meltdown.” How, I ask, is this behavior different from the general population? As Dan’s guardians, my husband and I could take him for an outing to a park or home for a day or for an overnight, as we often have done. But we have been warned it could be a long time before he would be permitted to return to the corner house—The Francis Avenue House—which has been a home he has loved for a decade. It is also the place where he gets the help he needs—the help he would need if anything happened to us. We are healthy, but we are 65. One never knows. Unmasked people are now among the throngs of those protesting the police murder of George Floyd, some making far more than a fuss. I deeply condemn police brutality against people of color. If I could get close enough to Dan to use the communication methods that work for both of us, I am sure he would tell me the same. I know his politics—and how he loves the diverse aides who help him get through life. He would go with me to a “Black Lives Matter” protest in a flash—and all of those on Long Island have generally been peaceful. If only I could take him without making his own challenging life even more insecure. Without jeopardizing his ability to return to his home.

I think back to the Skype calls I had with him when he was sick. He looked like a wilted, life-sized Raggedy Andy. When I remember him like this, I worry. He had late-onset autism, why not late-onset aftereffects? I worry about his mental well-being. Restrictions like the ones under which he now lives deepen his anxiety. He likes to be out and about. The two vans used by his house stand idle. Often, two of his three housemates—both of whom tested positive and are now recovered—take those walks with him. They speak more than Dan but still only very little. I know them and I know they all know what is going on. And that there is a missing piece. One of the “guys,” as we call them, was taken home by his mother when the pandemic hit. In May, she wrote to me that he was asymptomatic, never sick, but was testing positive and could not return until he tests negative. He has been gone for more than three months. He misses the guys and they him. That they live generally in harmony is amazing, since they have such distinct personalities and preferences. At the bottom of their first-floor steps it says: “A house divided. Giants versus Jets.” That may be the most benign of their differences.

Depending on the hour, Dan tolerates a mask or doesn’t. Friends, along with people I only know from Facebook, have, with an abundance of kindness, sent him different ones to try. His success with some of these is due to the fact that his aides—all dedicated and most reprehensibly underpaid—constantly remind him to keep them on and at times it becomes habit. He seems to like a simple bandana best, which is what his father wears. 

Yes, we could have taken him home. Whenever I hear from the mother who did take her son home from the Francis Avenue House, the guilt returns. She’s a warm mother, I hear Bettelheim’s ghost say. This mother sent me a message that in regards to her son, no one “would have done a better job taking care of him than me. No one can. I am his mother.” Gulp.

Continue reading at StatoRec.com here.

Comments

Irena

Donna - Thank you!
Thank you for understanding!

Irena

Finally got a chance to read the entire article - I agree with Grace.
This is so wrong, and sending such a wrong message to all of us autism parents!
How can a mother justify continuing sequestration of her disabled son AFTER that son survived Covid already? How much misery are we expected to impose on our injured children to appease that stupid, aggressive, brainless, irresponsible herd?
To me that sounds like this mother suffers from Stockholm syndrome, and she is try to convince herself and the others that the executioners of her son are actually doing a good job.
And one more thing - why in American mind independence means isolation and solitude? Why teaching your child independence should mean living alone?
In my (old world Russian Jewish) mind normal independent life means life with one's family, always taking care of the young and the elderly, and never being cut off your loved ones!
My son is 22. My dream is of him living normal life with my family or with his own family, not in the place of incarceration and constant supervision. I am not judging. I just disagree.


Grace Green

Sadly, I think this writer has got it all wrong. She should read Judy Mikovits' books, Plague, and Plague of Corruption. It's not the virus, coronavirus, that kills you, it's your reaction to the virus which is caused by prior vaccination(s). That's why there was not a temporal connection between her son's vaccines and the onset of his autism, yet a doctor said a virus might have caused the condition. Try to see things the way God does with time as a panorama, and then you can join the dots. Maybe the writer's huge sense of guilt is keeping her from seeing the obvious. It's very damaging that so many autism families are mislead by this sort of writing.

Theresa Cedillo

Love you Barbara and Kim. Thank you.

Donna L.

That is just what I was thinking, Irena. This article saddens me on so many levels...I certainly hope the general public does not read it, or they would come away from it with the belief that all kids/adults with autism have this level of phenomenal support and an endless variety of activities to choose from. Like a frickin' menu. Hardly the case in the real world. There is nothing -- absolutely nothing -- available to our kids. Our adults. Our families living with severe autism. This article makes me want to scream. Wishfully hoping for a Covid vaccine? Or any vaccine?? Seriously?? Good god, give me and my son Covid (or any other natural or manufactured disease) any day over yet another life-destroying vaccine.

Irena

Seriously?
Your family would take Covid vaccine so not to infect the herd?
Haven't you and your family sacrificed enough for that wretched herd?

Beleaguered Autism Mom

Yesterday I had a zoom call with a local group of parents of disabled adults. Sandwiched in between tales of death of a family member and melt downs over masks in grocery stores was the fact that a woman living alone has not seen her 40 year old daughter who is living in a group home in 4 months. She has gotten only one phone call a week - not even curbside visits to check her status. If rich people get to move between homes and keep housekeepers at both why are disabled treated like prisoners? Can you picture Bill and Melinda cleaning their own toilets?

michael

Thank you Barbara for sharing this glimpse into your family's world. Thank you Kim for trying to remind us we are living in the age of autism--some more than others.

Angus Files

We all live with a Mac Donalds whopper sized meal deal of guilt and the -what if?question.The only semblance to refigerator mother is your coolness Barbara.
Dynamic,enjoyable, but sad bit of writting thanks for sharing.


Pharma For Prison

MMR RIP

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