Autistic people face challenges complying with COVID health protocols

By Adelline Tri Putri

JAKARTA, Indonesia (AA) – Every Saturday, Rifeni Muis, drives for about three hours from her home in Bekasi city to Bandung city to pick up her brother, Rifano Muis.

Rifano, 25, has been diagnosed with Autism Spectrum Disorders (ASD) since two years old.

Initially, the doctor told the family that Rifano was a late-talker child.

"My brother showed signs of limited speech. He can talk, but he has a limited spoken vocabulary compared to peers for his age," Rifeni told Anadolu Agency on Tuesday.

At that time, she did not know that her brother has ASD. Moreover, autism was not the subject of interest until the late 1990s.

ASD is a neurological and developmental disorder that begins early in childhood and lasts throughout a person's life. It affects how a person acts and interacts with others, communicates, and learns.

There is no known single cause for autism spectrum disorder, but it is generally accepted that it is caused by abnormalities in brain structure or function.

Since 2019, Rifano has been undergoing therapy at Pelangi Hati Foundation, a therapy center for people with special needs in Padalarang district, in Bandung. He stays at the center's dormitories on weekdays and comes home every weekend.

The therapy primarily focuses on developing fine and gross motor skills, as well as independent living skills.

"Every day, he learns about the basics of good hygiene, how to brush teeth, have a shower or bath and wash hands on his own," said the sister.

The family decided to send Rifano to the special dormitory so he will be able to perform activities of daily living on his own.

"We have considered this matter carefully. We regularly speak and consult with the therapist," said Rifeni, adding that she wants to see her younger sibling not overly dependent on other people.

On weekends, Rifeni picks up her brother to spend time with the whole family in their home.

"So that he will not forget that he has a house and a family," she added.

However, she continued, the situation changed drastically since the COVID-19 pandemic hit the country.

Children, adolescents and adults with autism spectrum are a particularly vulnerable population, impacted by stay-at-home orders, closures at nonessential services, and social distancing standards.

As everyone needs to comply with health protocols, they have to teach Rifano to adjust as well.

"My brother tends to take off his mask, so we need to remind him to wear it over and over again," she said.

Thus, Rifeni minimizes the risks by staying at home as much as they can.

If her brother gets bored, they will sometimes drive around the city for hours without making a stop and then going back home.

The COVID-19 pandemic is stressful enough, but for children and adults with autism and their families, the crisis can be especially challenging, said Rudy Sutadi, a pediatrician.

At a time when it is vital to wear masks, it feels like your airflow is being restricted, and for some individuals with autism, this could cause feelings of increased anxiety.

"Besides, they might refuse or take off their masks because of sensory issues," Rudy told Anadolu Agency.

Therefore, he suggested ABA (Applied Behavior Analysis) and BIT (Biomedical Intervention Therapy) help people with ASD comply with health protocols.

ABA is a form of therapy designed to improve and change specific behaviors like social skills or communication.

"ABA therapy helps autistic people with activities like the physical task of putting on and taking off masks and de-sensitizing them with heightened sensory sensitivities around mask-wearing," he explained.

Meanwhile, biomedical intervention usually starts with a restrictive diet, such as the gluten-free, casein-free diet. BIT may be vitamins, probiotic diets, medications and others.

Joko Yuwono, a lecturer at the Faculty of Teacher Training and Education, University of Sebelas Maret (UNS), advised people with ASD and their families to stay at home to minimize the risks.

He also stressed being able to access education as the most crucial thing for children with autism spectrum.

Teachers should stay creative to reach children who stay at home during the lockdown, he said.

"Likewise, parents can maximize activities at home to help develop their child's gross motor skills and encourage brain development," he wrote on the university's website.

Every year, April 2 is recognized and celebrated internationally as World Autism Awareness Day.

The World Health Organization has estimated the global prevalence of ASD to be 1:160 persons.

Meanwhile, there is no recent estimate of the prevalence rate of ASD in Indonesia.

However, based on data released by the Ministry Of Women Empowerment And Child Protection, the number of people with autism in Indonesia is estimated to reach 2.4 million, with an additional 500 people every year.

*Writing by Maria Elisa Hospita