Across India, isolation and fear are taking their toll on children and caregivers

For families of people with autism, lockdowns have reversed therapy efforts, be it speech, behavioral or sensory therapies

In April, Masarat, mother of 11-year-old Kamran, locked him in a room for a day. She had to go get medicine from the market in Srinagar.

Kamran, who is both autistic and disabled, spent all the time knocking on the door. He thought his father, who was in the next room, would let him out. But he didn’t.

His father, a government official, had tested positive for COVID-19 and was in home quarantine.

“All I could do was cry. I didn’t want him to get infected too. He’s more vulnerable than I am,” Kamran’s father said on condition of anonymity.

Autism is a neurological disorder that primarily affects communication. People with Autism Spectrum Disorder (ASD) exhibit repetitive and limited behavior patterns.

Such children resist even small changes in the routine. For their families, lockdowns have resulted in a reversal of therapy efforts, be it speech, behavioral or sensory therapies.

Occupational therapy tools lie unused at a special school in Kashmir. Thanks to Mudasir Rawloo

“When you stop treating autism, it reverses everything you’ve taught the child. Some even forget how to speak,” said Kulsuma, mother of an autistic child from Srinagar.

Kulsuma runs Exceptional Minds, an autism and early intervention center in Kashmir, where more than 20 autistic children were enrolled in 2019.

The center has been closed for almost two years.

“Parents are afraid to let their kids go to classes,” she says. Such children hardly adhere to social distancing standards or wear masks on their faces, she added.

Experts say autistic children have increased levels of “sensory sensitivity.” Keeping masks on their faces or confining such students to a single couch is a very arduous task for therapists.

A therapist at a specialist treatment center in Kashmir prepares the props for a special class as schools prepare to reopen. Image Courtesy: Mudasir Rawloo

Making life predictable

According to the United Nations Children’s Fund (UNICEF), which is committed to the development of children worldwide, it is imperative to introduce “new daily routines” for children with autism to relax during a lockdown.

It calls “role play” an effective tool to provide such children with COVID education.

It also suggests that rewarding a child once they imitate hygiene activities, such as washing hands, will encourage them to repeat it.

“Every step of the daily routine must be predictable,” the UNICEF guideline reads.

Mona Rai, mother of an autistic child in Hyderabad, agrees. She said in her experience that autistic children and adults manage and cope well with a predictable routine.

“During the lockdown, I made sure my son’s breakfast and bath time were set and that he would dress like he did for school,” Rai said. She added that she had divided the day so that her son would have to help with household chores.

“Filling bottles, putting clothes in the washing machine, helping to hang clothes, chopping vegetables, making beds, setting tables for meals, playing with Lego (plastic construction toys) in addition to watching TV as a group activity were some of the things we did at home said Rai.

Rai added that there was also a set time for the whole family to go for a walk in the evening. “Then we all compared the steps we took,” she said, adding that this encourages many such children to walk more.

She said each activity was rewarded with a cup of tea or cake. “This can be anything that is a favorite of the child,” she added.

Absence of institutional aid

For over ten years, Rohit Kumar from Andhra Pradesh has been treated and trained at the National Institute for the Mentally Handicapped (NIMH) in Telangana. In April 2020, he became ill and tested COVID positive.

“It was a shock,” said his sister, who studies medicine in the Philippines. “The immediate closure of his school caused him more mental problems than the infection.” She said he hadn’t touched any food for three days.

She noted that Kumar was deteriorating despite his eating habits being instilled in him over the past two decades.

“I can’t imagine what it must be like for autistic children who have never set foot in school or are barely educated,” she added.

Kumar’s mother then took it upon herself to feed him. “Sometimes she had to be tough,” his sister said.

Kumar is stacking molds at his home during the lockdown. Thanks to: Kumar’s sister

Compared to other developing countries, India has fewer institutional facilities for autistic children. The US has annual surveys to determine autism rates, as well as a world-class management infrastructure. In India, the government operates some mental health schools.

As a child, Kumar was one of the “happy few” who visited an institution like the NIMH.

“In most rural areas there is no early intervention for such children. Autism cannot be cured, but its adverse effects can be reduced with early therapies. Government guidance for such parents is scarce,” said a government-employed psychologist from Delhi on condition of anonymity.

She added that despite a special Ministry of Social Justice and a special department for people with disabilities, large-scale awareness campaigns targeting disorders are not being launched.

Questions addressed to the Ministry of Social Justice remained unanswered.

Increased aggression and drug use.

Back in Srinagar, children like Kamran – never enrolled in a school – have been housebound since the pandemic.

“He has become more aggressive lately. He even hit me sometimes and cried later,” Masarat said.

Health experts say that in most such cases, sedatives otherwise seen as a last resort are given to children to keep them calm. “Unfortunately, many parents think they are doing well, but it harms them more. Therapies are much more effective,” said a Delhi psychologist.

At Kamran’s house, puzzles and therapy are on a shelf. His parents say he barely uses them after his school closes

Homeschooling and Online Therapies

Kusuma, who is also certified in art and play therapy for autistic children, said parents should create a school-like environment at home so that children don’t feel closed off.

“For my son, I kept all the equipment at home to keep him busy,” she said, adding that online schooling of severely autistic children is difficult.

Colorful balls in an autistic child in Kashmir. Thanks to Mudasir Rawloo

She said people with ASD or autism spectrum disorder fall into three categories: mild, moderate, and severe. “The severe ones are more hyperactive and more prone to stress when introduced with a change,” she said.

She added that a school-like atmosphere at home reduces confusion for them.

Most therapists spoken to for this piece said that only the mildly autistic children could get online therapies. They said moderate and severely autistic people are “intolerant” of staring at a screen for long periods of time.

Empty occupational therapy rooms at a special school in the Jammu division. Image Courtesy: Mudasir Rawloo

Dr Bhavna Barmi, a senior psychologist from Delhi, is the founder of Psycare Mental Health Care. dr. Barmi said parents have a bigger role to play when it comes to homeschooling such children.

She said the pandemic has mainly led to “anxiety, depression, Attention Deficit Hyperactivity Disorder (ADHD) and deterioration of communication skills in autistic children”.

She did not directly attribute these adverse effects to COVID, but to the effect the pandemic has had on parents and therapists.

“The emotional and physical health of parents, therapists and caregivers has deteriorated, manifesting as anxiety, leading to increased alcohol consumption and smoking.”

She added that this leads to behavioral changes and less attention for autistic children. “These kids want happy faces around them. If their parents seem depressed to them, that makes them anxious too,” she said.

Ahmed, a senior therapist at Learning Edge, an early intervention center in Central Kashmir, said no more than 10 percent of students participate in online learning. “Parents should take crash courses on their own and not just rely on experts,” he added.

Need help and self help

“Parents of such children whose special schools are closed should be able to work from home and their working hours should be kept to a minimum so that they can take care of such children,” Kamran’s mother said.

dr. Barmi said that parents who are self-educated about ASD are well able to cope with the situation and have successfully supported the child’s progress.

“Many parents chose self-study about ASD, which improved the child’s progress (more than therapists),” she said.

Barmi encouraged parents to take virtual crash courses and participate in discussions with parents of similar children on online forums.

She also stressed that therapists needed to inculcate “visual arts rendering techniques” to educate such children about COVID-appropriate behavior.

Paintings and shapes drawn by autistic children are scattered around a special school that has been closed since 2019. Photo by Mudasir Rawloo

“I think it’s also very important that parents have a good schedule for these kids during lockdowns. Even as normal beings, in a state of oppression, we forget the basic etiquettes. How many of us tend to comb our hair daily while we are housebound?” asks Kusuma.

“We forget and so do these children. Parental patience is all these children need,” she added.

Ahmed said that an autistic child understands a situation where parents who can afford it hire a “shadow teacher” to care for the child. “But the risk of abuse of these children is also greater and parents should be vigilant about that.”

He said that expensive equipment is not necessary for these children and that equipment at home can be used for ADLs or activities of daily living. “Hundreds of ADLs are on YouTube. Parents can contact them.”

He also says it is morally obligatory for everyone to help families with autistic children.

“Helping such parents by simply sharing their smaller responsibilities, such as going to a grocery store and picking up supplies, can be of great help. Little things like that to you can mean a lot to them,” Ahmed said.

(Names have been changed to protect identities)

Umar Sofi is a journalist from Delhi. He writes about politics, health and human rights

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