About thirty-five children with autism would be cared for at the special daycare and therapy centre Learning Edge in Srinagar’s Munawarbad before the outbreak of COVID-19. Since then, however, only about three or four children are undergoing daily therapy and classes.
Lockdowns and COVID-19 protocols have disrupted life across the world, breaking old routines and inventing new ones and throwing life off-track for many. For children with autism, however, a new routine isn’t just about giving up lifestyle choices.
Before the pandemic, Nousheen Parvaiz, a speech therapist at Learning Edge, conducted speech therapy sessions for over twenty autistic children but now hardly two to four children visit the center every day.
“Parents are scared of COVID-19. So, they don’t visit us for therapy sessions or even don’t join the school [daycare facility] back,” said Ms. Nowsheen, standing at the door of the empty hall at the centre designated for speech therapy.
For the children whose parents did restart their therapy after the lockdown was lifted, said Ms. Nousheen, therapists at the centre have had to start from square one. “Autistic child’s routine should not be disturbed. They forget everything after a break,” she said.
In the past six months since the outbreak of COVID-19 in Kashmir–and despite lifting the lockdown even after failing to curb the wave–children with autism have lost access to crucial care needed for their growth and as the pandemic rages on, many children continue to lose out.
Learning on a pause
Children with autism, according to therapists, face behavioral issues by the change in routine and being confined to their homes only. “They are disengaging from lessons, regressing in their behaviors, and becoming more aggressive,” said Ms. Nousheen.
While parents and therapists are concerned about the therapy and early-age development of these children, they also realize going to school is not safe for them. “Most of them [autistic children] don’t like wearing a mask and not even the people wearing masks,” said Ms. Nosuheen, recalling how one of the children at the center snatched her mask. “It’s not safe here for them right now but it’s necessary for these children to come for sessions at least.”
Based on the nature of the Autism spectrum disorder (ASD), families of children with autism rely on dedicated professionals: therapists, teachers, extended family members, and other caregivers providing social and psychological support to help them deal with their day-to-day activities.
As such, homeschooling children with autism is not an option, said Ms. Nousheen. Even as online education has been the only source of education for children since the pandemic hit but virtual learning doesn’t seem to work for children with autism. Even children who do not have autism can be distracted by online classes at home, said Ms. Nousheen.
At the centre, said Ms. Nousheen, there are play-way methods to teach basic things to children with autism. These children are taught through different methods such as art and craft therapy, music therapy, and many other play way methods of learning skills.
According to United Nations Children’s Fund (UNICEF), for children with disabilities disruptions to daily routines by implementing social distance and isolation measure to curb the spread of the COVID-19 pandemic, remote homeschooling not only requires access to adequate technological resources, the internet, and learning materials, but also access to specific assistive devices or special education curriculums that allow for a continuous education at home that accommodates the child’s specific learning needs.
Most kids require special learning environments, particularly if they also have high functioning autism. These are important tools to help children with autism work on their social skills, strengthen their communication skills, boost their reflexes and achieve their educational goals. “You might teach a child with mild symptoms of autism at home but it is not the same for children with severe symptoms,” said Ms. Nousheen.
“They can’t focus on what someone is saying on the other side of the phone,” she said, adding that online education is ineffective for children with autism. “They get [more] easily distracted [or unable to focus owing to their condition].”
Autistic children and COVID-19 lockdown
Fourteen-year-old Farman Parvaiz, a child with autism, had gotten used to playing with rings, lifting them, and stacking them quickly. However, after the break in his routine of daily therapies, he now picks up a ring at a much slower pace.
“Because of COVID-19 lockdown, he forgot some learned skills as his daily routine was hit and I couldn’t provide therapies to him,” said his mother Ms. Kulsuma Parvaiz (not related to Ms. Nousheen) who also runs another therapy center, Exceptional Minds, for early intervention for children with autism, in Srinagar’s Bemina area.
Farman has undergone many behavioral changes since the pandemic hit and he was confined to his home, said Ms. Kusluma. “He got hyperactive and aggressive. He sometimes even bangs his head against the wall,” she added.
Ms. Kulsuma has been running the Exceptional Minds centre since July 2019 and goes there every day along with Farman. She has been a teacher and therapist for Farman from the very beginning and now, Ms. Kulsuma is providing the same facility to many other children with autism.
“I did a crash course in occupational therapy in Delhi for my son,” she said. “I can’t leave him alone at home. I have to look after him all the time.”
Therapies are usually implemented by conventional face-to-face means, whether at home or at the center. However, that has stopped now because of the COVID-19 pandemic. It is not safe for these children to sit-in gatherings as they hardly wear a mask or sit still.
“One on one sessions might work but we all [families, therapists, and teachers] are supposed to take all the precautions for them,” said Ms. Kulsuma, adding that families have to take care of their sanitization to keep them safe.
Ms. Kulsuma thinks that the children feel isolated by being confined to their homes in COVID-19 as their daily routine gets hit and families don’t pay complete attention to them. “Children with autism also stopped cooperating with families.”
According to Ms. Kulsuma, society, in general, is unable to empathise with children with special needs, who face rejection everywhere. “Sometimes, their own family doesn’t accept them,” she said. “I wanted to make people aware of autism.”
The needs some autistic children have inside and outside the classroom, the teaching, the therapy, all of that had to come to a halt. Autism is a lifelong struggle and has no cure but therapies can control it which also got hit due to COVID-19. “They are at home, I can’t imagine how challenging it must be for families and stressful for these children”
The cover story originally appeared in our 5-11 October 2020 print edition.