Sad in our hearts
A look back at the year in autism
Imagine the worst day you can, with a typical houseful of kids in an extended lockdown during the pandemic. Now multiply the stress of that day 100 or 1,000 times and you can begin to understand what this last year has been like for people on the autism spectrum and their families, in Israel and around the world.
April 2 is World Autism Awareness Day. As COVID restrictions ease and the end of the pandemic may be in sight, people with autism and their families are still struggling to overcome the dislocations of the past year, but the reopening of society might present an opportunity. For better and very often for worse, it has forced people with autism – who often have extraordinary trouble grappling with even minor changes in routine – to cope in new ways. For the lucky few, it has been a period of growth, and for all it has shown them what parts of their usual routine were the most valuable, what needs to be improved and strengthened, and what services and treatments they can live without.
As the mother of an adult son with autism, I look back to the Passover holiday a year ago and realize how terrified I was. Not of the virus, but of the fact that the lockdown regulations meant that my son Danny could not come home. He is 24 and lives in a small special-needs community during the week, but normally comes home for the weekend. I worried that being confined to his home during the holiday would provoke an extreme regression, including serious meltdowns.
The night of the Seder last year was also his birthday, which made it especially difficult. I couldn’t imagine how he would handle it. Phone calls, facetime and Zoom sessions are not helpful for my son and for many other people with autism. He doesn’t want to see me and his brother as little squares on a screen, he wants to be home with us. I feared that digital contact would simply make him realize how much he missed us and actually make him feel worse. When the staff asked him if he wanted to talk to me, he would answer with a definite “No!” And no one thought it was because he didn’t miss me.
Later in the first lockdown, socially distanced, brief outdoor visits with masks were allowed, but I felt it would upset him to see me without being able to hug me and without being able to head home with me. My only contact with him was through the care packages I dropped off every week as the lockdown dragged on for a month and a half.
We were extremely fortunate in that my son has carpentry, music and art classes and workshops in the same community where he lives, so he was able to continue with his usual routine almost completely normally, except for home visits. But this was not true for the vast majority of people on the spectrum who live in one place and go to their work or school via vans or buses. For most of the lockdowns, special education continued as usual, but students who are fully or partially mainstreamed were stuck at home with Zoom.
In most cases, the sheltered workshops for specialneeds people were closed in the first lockdown and in some cases, in the second and third lockdowns as well. That meant that these people were either confined to home with families who struggled to care for them while they were cut off from their routines, or at their group homes, where at times they were forced to stay mainly in their rooms for weeks, which caused enormous
stress and suffering. In many cases, they regressed, had tantrums and sometimes became violent. It was hard to read messages on the WhatsApp groups for families of people with autism without crying.
WHEN THE SECOND lockdown rolled around – and once again we couldn’t be together for the holidays –
Danny asked if I could visit. Something had shifted, and he had become mature enough to see me with all the restrictions and we had some beautiful one-hour visits.
A couple of weeks into the second lockdown he had another unexpected breakthrough. He told one of his teachers, “It’s not good for a person to be alone.
It makes him sad in his heart.” These were the most complex and emotionally revealing sentences he had ever uttered, and though they betrayed the sadness he – and all of us – had been feeling in the COVID era, I was astonished at the growth it revealed.
It was clear the staff where he lives had been able to create a stable, fulfilling environment for him, where he was able to unlock his potential to communicate in a way that I hadn’t believed was possible.
Looking at the bigger picture, in the second lockdown, the Social Welfare Ministry gave the managers of special-needs residences discretion to allow home visits as they saw fit. This was a huge step in the right direction. For some people, the risk of contracting COVID during a home visit was not nearly as dangerous to them as the isolation from their families and being cut off from their daily routines.
Much more needs to be done to prevent a repeat of the negative consequences of the lockdowns. A little reasonable flexibility in the various bureaucracies that serve the special-needs community could have prevented special-needs people from being virtual prisoners. Work, school and contact with family are therapeutic, just as vital as any medication for this population.
In spite of the difficulty people with autism around the world had in coping with lockdowns, it’s incredible to report that the biggest international media story about autism revolved around a silly movie called
Music directed by the singer Sia. It is a fable-like story about a gentle girl with autism who loves music, cloying and unrealistic in just about every way. However, the focus of the furor was on the fact that the actress who played her does not have autism.
Now, while I agree that authenticity is important, only the tiniest fraction of the highest-functioning autistic people would be capable of acting in a movie. In The Specials, a 2019 drama by Olivier Nakache and Eric Toledano, about a man who runs a home for people with autism in Paris, all the characters with autism, except for one (who constantly hits himself) were played by autistic actors. However, Nakache and Toledano, the duo who directed Les Intouchables, are among the most commercially successful directors in Europe and were able to spend two years working with young autistic people in a special workshop to build their trust and learn how to direct them.
For most directors, there is no budget for that. Does this mean that people with autism who don’t speak and need a great deal of care can never be depicted as characters in a movie because directors do not have the money to spend years working with them?
But let’s get real. After the year that we autism families have had, casting decisions couldn’t be further from our minds. We’re worried about another lockdown that may cut us off from our children again. And we’re still worried about the same old problems, of finding appropriate schools, work and housing for our children. But this pandemic has shown us what our children can accomplish when they get the support they need and how they are harmed when they are cut off from that support. We need to focus on creating flexible policies that will protect them and help them to flourish in every way through this pandemic and the next because, as Danny said, being alone makes people sad in their hearts.
Hannah Brown’s novel, If I Could Tell You,
on Amazon.com. is available