Spectrum: Autism Research News
In England, a basket on the porch becomes a purgatory for deliveries deemed perilous. In Spain, families don blue ribbons to silence the ‘balcony police,’ who jeer at passersby they think may be breaking the local ‘stay home’ advisory. In India, a child puts his fears into pictures, drawing a round blob with spikes in a tableau of sickness and recovery. In Dubai, Portugal and elsewhere, teachers and students work out a new form of school, seeing one another only on computer screens.
These snapshots of life during the coronavirus lockdown come from autistic people or their parents, around the world. Spectrum journalists interviewed some; others sent us their stories in response to a social-media call. In total, 22 people in 19 countries told us how the initial weeks of the pandemic have challenged and changed them. (Several contributors have withheld their last names to protect their privacy.)
Their stories reveal some common truths: No matter who you are or where you live, routines are an important part of life. The pain of change is real, and in many ways autistic adults have felt this pain more intensely than their neurotypical peers. But change can also bring growth. One autistic child is learning to cook; an autistic teenager is penning poetry again; and another boy is just starting to express his emotions on a digital platform his teachers created in early March. Many autistic people, who typically cling to routine, are — like everyone else — learning to live with uncertainty and to let the future flap in the wind.
Listen to a related podcast here.
With reporting by Brendan Borrell, Linda Nordling, Ingrid Wickelgren, Marta Zaraska and Lina Zeldovich
Cape Town, South Africa
Tyler thrives on movement. He loves being outside and going for drives. But under lockdown in South Africa, we are not even allowed to walk inside the complex where we live. Tyler’s sleeping patterns have become erratic, and he’s had some meltdowns. One neighbor has complained that Tyler is banging on the walls with his fists. The first two weeks were the most challenging. There are no special rules here for people with autism during lockdown. I spoke to Tyler’s doctor, who sent me a letter giving us permission to be outside that I can show to the authorities. She said to take him out, go for a drive. I took him for a long, slow drive along the coast. Tyler loves feeling the wind, so I rolled the windows down and he put his hand out, as he does when I drive him to school. We were out for about an hour, and it helped him. His school, Autism Connect, which I helped set up because there were no services for children with autism in my area, is trying to move to online learning, but not all of our parents have access to the internet. In addition, the school is losing income because parents are not able to pay the fees — many have been retrenched or are simply not getting paid. It’s a message that needs to get out: The special-needs community suffers a lot in situations like this.
When I returned to Ghana from the United States in 1998, people said autism was a rich man’s disease. But I helped start the first autism center in Ghana, and in the past 22 years, many children with autism have come through our doors. The COVID-19 pandemic has affected my son’s routine. He has tried to hit his head, a behavior I haven’t seen in a long time. He has torn up three shirts. That’s where he puts his agitation. But he knows his boundaries. He can do his own dishes; he can do laundry; he can iron; he can sew. I gave him a needle and thread and told him to stitch one of the torn shirts back up. Still, he has handled lockdown fairly well. It’s me who is afraid. I worry about how long the lockdown will last. And I’m afraid for the children. Already parents from the center call me, at their wits’ end. I worry about abuse — not by the parents, necessarily, but by other people in the extended family or in their area, people who don’t understand. All the gains that we have made with these children, are we going to lose them?
Dubai, United Arab Emirates
The nights are the toughest. Owen’s brain is not challenged during the day anymore, so it’s going on and on all night. He is clanging around in his room, keeping everyone awake, and coming into my room. His special-needs school closed weeks ago already — first for a two-week spring break, then because of the virus. Now he has classes over Zoom. They have mindfulness and exercise sessions for everyone, as well as small classes for him and three other students, with two teachers present. We also get assigned activities for the day on an app. It’s been challenging, trying to teach a nonverbal child over Zoom. I have to help Owen a lot. And it’s also been quite eye-opening for me, seeing how much work still needs to be done toward his everyday functioning. But overall, things have been quite calm. There’s been no hoarding in grocery stores, and we have very few cases. Besides, there’s been one surprising benefit to all this: Since schools went online, we are now allowed to use videoconferencing apps, which the government had previously banned. We can now video-call our families outside Dubai, which is helping a lot. Ironically, things have opened up for us now.
Tel Aviv, Israel
Mark read the coronavirus news, so he understood what was happening, and that fueled his anxieties. He couldn’t distinguish real news from rumors, so I suggested that he read only trusted sources, such the Ministry of Health website — and that helped. The other challenge was losing the regular schedule. Before the lockdown, a bus took Mark to school, and on certain days we went out for pizza. Setting up a new routine was crucial. Remote learning certainly helped, but so did giving Mark new responsibilities. Now he empties the dishwater every morning. He’s also responsible for making sure we have bread in the house. When we run out, he puts on a mask and gloves and walks over to a nearby store. He started helping me cook, and it became a new hobby. He doesn’t like to cut onions, but otherwise he’s really good at it. So far, he’s made a sauce for lasagna, cutlets and schnitzels. He’s even baking bread! I now telecommute, so his help has allowed me more time for my work. Surprisingly, the quarantine has had some positive outcomes for us.
Republic of Singapore
Calder loves public transport. We used to take the bus and train every weekend, but now we cannot. When the government stipulated that there should be no gatherings of more than 10 people, our Sunday church service moved online. Fortunately, Calder seems happy listening to us sing worship songs to the video. His school is moving online, too, and I can already see how he might get restless. If I didn’t come up with lots of activities for him, he would just play word search on his phone until he became agitated from boredom. I try to keep him busy — making hamster bedding for his younger sister’s pet, practicing piano, hanging the laundry, cutting beans or mushrooms for dinner. I am grateful as long as he stays calm and the family is healthy.
My son is curious about the pandemic, why we are all holed up at home. Once I explained the virus to him, he began drawing it, which is his way of expressing himself. The biggest challenge for us has been the disruption of our routine — something we’ve painstakingly created over the years and is now completely gone. My son, who had attended school and therapy sessions, who went on walks and grocery shopping, is now confined within the walls of our home. But there are positives. I’m working from home, and as a result I can spend more time with my son. These days we do things together that I could not have done before. And although Inesh’s verbal stimming increased right after the lockdown and his concentration was poor, he is now much more settled. He cooks, bakes, and yes, is on screens more than before. But I see that he has made peace with the situation.