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For autistic children in India, the pandemic has been a double whammy
Devoid of government support, the families of children with neurodevelopmental disorders have struggled to cope with limited resources.
Robin, 20, from India’s southern city of Hyderabad, tested positive for Covid-19 in April last year. At the time, India’s healthcare system was overwhelmed with hundreds dying each day in need of medical oxygen.
Robin, who is autistic, was enrolled in the National Institute for Mentally Handicapped (NIMH) in Telangana state for over 15 years. There, he was given behavioural and speech therapy on a daily basis.
“In the last 15 years, he never skipped school. It was his second home. He could not process his abrupt withdrawal from school and would not eat anything for days,” his sister Shiney Roselin told TRT World, adding, “he was like a lifeless body in a room for over a week.”
The World Health Organization (WHO) defines autism as a neurodevelopmental condition that is characterised by a “lack of social and communication skills”. It says severely autistic children face difficulty transitioning from one activity to another.
For autistic children, any change in routine is accompanied by different levels of resistance. In India, where autism management infrastructure access is scarce and undemocratic, psychologists say the pandemic has undone most therapy efforts. Families of autistic children say lockdowns have made them more aggressive. Many have even lost the ability to speak after missing speech therapy.
“It is a spectrum disorder. One can be physically fit and educated, another can hardly maintain any eye contact or be able to walk or even differentiate between family or strangers. For the latter and their families, the pandemic has been an added tragedy,” said senior therapist Shahida Ahmed, who works at Learning Edge, a centre for autism and early intervention based in Srinagar, Kashmir.
When handling them at home, she emphasised that parents should make every step of life predictable.
“Sleeping in the same room on the same bed, having breakfast at a familiar place and many predictable activities keep them stable. Any change in this creates confusion,” Shahida said.
People participate in ‘Prabhat Pheri’ on the occasion of World Autism Awareness Day, outside Raj Bhawan, on April 2, 2021 in Patna, India. (Santosh Kumar / Hindustan Times via Getty Images)
Failure to respond
Most autistic children have co-occurring neural conditions like epilepsy, depression, anxiety as well as difficulty sleeping and self-harm.
Robin’s sister says his consistent special schooling since childhood is what prevented him from experiencing pandemic anxiety.
“Initial days were difficult but given the special school-like atmosphere at home, created by our mother Shantakumari who also works at NIMH, he got accustomed to the homely routine,” she said.
“His day at home would be scribbling on his school book, playing irregular chords on his guitar, stacking and demolishing colourful rings, and even cycling in the backyard during the lockdown.”
But for children like Jaan Nissar in Srinagar, schooling even in pre-pandemic times was impossible. Born with Neural Tube Defect (NTD), Nissar also shows severe levels of autism. He cannot maintain eye contact or keep his head stable.
In May last year, his father Moin Ahmed, a doctor, tested positive. His mother Shamima was expecting a child. “Once they had to even leave Jaan Nissar alone while Shamima would run for errands to the market and Moin too was quarantined. He would cry for hours,” said their relative Hilal Ahmed.
For such families where both parents are employed, experts say autistic children have heightened levels of attention deficit making them more mentally hyperactive.
Dr Nidhi Singhal, director of research and training at Action For Autism (AFA), an NGO which started the autism movement in India, said, “a lot could have been done for these children to avoid what unfolded.”
Singhal added as the outbreak took place, AFA as a frontline organisation began chalking up ways to continue treatment.
“Many NGOs coordinated and we started working beyond our areas of responsibility…the government seemed non-existent in [terms of] response and relief,” she said.
Conversations with parents of these children also indicate a rising consumption of sedatives. International protocols for autism management highly discourage the use of drugs; they are only given as a last resort to suppress symptoms like hyperactivity.
“But doctors here prescribe psychiatric drugs for all autistic children,” Shahida said.
According to research, the use of sedative medicines like Alprazolam witnessed a steep rise during the pandemic in the US. No such data was available for India.
Jaan Nissar was progressing well with occupational and speech therapies, but became aggressive during lockdowns. In July 2022, he was admitted to hospital twice after his family took him to a local psychiatrist who had prescribed him sedatives that doctors said was an “overdose” for his body.
“He was completely unconscious for two days and had to be hospitalised,” said Hilal Ahmad, his uncle.
Dr Shilpa Manogna, senior associate professor at NIMH, told TRT World the pandemic has created a lot of idle time which leads to aggression. To curtail this, she says, NIMH had to organise training for parents and siblings on how to initiate meaningful activities at home in lockdowns.
When it comes to virtual teaching, Dr Manogna said they had difficulties initially but among all groups of special needs children, the autistic ones benefited.
“But this is limited to the academic area. Therapies cannot be given online. Be it speech or occupational therapies, these exercises have to be done physically.”
Shahida seconds this too, saying that online therapies are just an “eye-wash”.
“There is a bigger danger of these children getting used to digital screens. Their whole progression stops if they enter the virtual world. It is very difficult to take away the phones from them later,” she said.
She added only a few children were able to attend sessions online.
Dr Manogna says some families did not have access to the internet, and in many instances there is just one smartphone to share between two kids.
“Parents mostly would prefer giving the phone to their non-disabled child for online classes and not the ‘special ones’, thinking their education was less important.”
Children participate in drawing activities during the celebration of World Autism Awareness Day (WAAD) in Mumbai, India in 2019. (Himanshu Bhatt / NurPhoto via Getty Images)
Adapting to new realities
The Ministry of Social Justice and Empowerment (MSJE), which supervises the disability affairs department, has been criticised by some for working passively to mitigate the crises faced by vulnerable communities during the pandemic.
While some at the state-level at least took steps like prioritising vaccinations for the transgender community, there were largely no efforts made toward special needs children.
Singhal said there should have been a “circumstantial assessment” of problems that families face while dealing with such children during a pandemic. “Families [do not always] have adequate resources for online therapies,” she said, adding that the crisis for families with adult autistic individuals is more severe.
Another government-appointed psychologist from Delhi who wished to remain anonymous, told TRT World the government should also design courses for parents of autistic children.
“There is a concept of autism villages where both parents and the autistic children are given shelters. In this closed community set up, covid precautions can be followed and therapists and caretakers both can live with the facility. A room can be dedicated for the school, there can be a play area besides a few therapy rooms,” she explained.
“This can ensure democratic access to institutional help for such families and the load on urban NGO facilities can be reduced to a great extent.”
TRT World reached out to MSJE for a response but received no answer at the time of publication.
Dr Bhavna Barmi, senior psychologist at Fortis Hospital Delhi, says that most autistic children have been victims of Attention Deficit Hyperactivity Disorder (ADHD).
“Joblessness, salary cuts, work-from-home routines have caused anxiety among most caregivers and even therapists. This, in turn, has led to poor sleep quality, poor food habits, and somatic symptoms like low energy levels among caregivers thereby causing inattention on these children,” Barmi said.
Kulsuma Parvaiz, a Gurgaon-based mother of an autistic child Farman Parvaiz, said that she has created a “special home” for her son in wake of lockdowns.
“I wake up Farman before dawn, and make him offer Fajr (morning prayer). This is followed by exercise and later he is busy with his homeschooling throughout the day,” she said. Parvaiz has herself done various certificate courses in autism and oral placement.
“Autism is a journey; we have to adapt to it. We can’t be relying on experts forever,” Parvaiz said while asking parents to be mentally strong too.
News
Guest Opinion: Through the mist of “de-risking,” a wide road of cooperation is always here for EU, China
How time flies. We are now a third of the way through 2024. During the period, have you realized any dreams? In the past, many Chinese people have made their dreams come true. Some stories went viral on the Internet, touching and inspiring numerous netizens. Here are some of the stories.
China’s Shenzhou-15 astronaut crew is known as the “Dream Crew.” Astronauts pursue their dreams of cruising in space together with China’s Space Dream. Among them, Deng Qingming’s story is particularly moving.
In 2022, Deng was selected for the Shenzhou-15 manned space mission after a comprehensive evaluation at the age of 56, perhaps not a golden age for an astronaut, a career that would require one’s physical strength and mental alertness to be constantly at their best. Yet Deng has shown his fellow Chinese that he was in excellent condition. Having learned about his experience as a “back-up astronaut,” we truly admire his devotion to China’s manned space program.
Four times in a row, Deng was selected as a member of the preparatory crew for Shenzhou-9,10,11 and 12, but never made it to the final list. Most of the time, he was a training partner for the luckier ones. “It’s impossible not to feel frustrated sometimes,” Deng admitted, “but no matter who carries out the mission, he or she represents all Chinese astronauts and I am one of them. As long as the mission is successful, my efforts pay off, even though I was only ‘Plan B’.”
As time passed by, Deng’s hope to fly into outer-space seemed to fade. But he never gave up. He quickly put aside his frustrations and restarted his daily training with an all-time positive attitude. He was willing to spend his whole life preparing for the mission he loved, but he would never allow himself to be unready when and if the task fell upon his shoulders. And when the task really came to him in 2022, he had every capability to accomplish the mission with excellence. It could be said that the rapid development of China’s space industry gave Deng the opportunity to chase his dream and Deng integrated his career into China’s space industry so that his dream was finally realized.
The Shenzhou-15 astronauts Deng Qingming (L), Fei Junlong, and Zhang Lu send their Spring Festival greetings from China’s Tiangong space station in a video released by the China Manned Space Agency on New Year’s Eve, January 21, 2023. (File Photo/Xinhua)
The dream to get equal rights in education and development has also come true in China as everything continues to improve. At the graduation ceremony of the Communication University of China in June 2023, a valedictorian won the attention of many Chinese for her good voice and impressive speech. Her name is Dong Lina, the first visually impaired master’s degree graduate specializing in broadcasting and television in China, who was once working in therapeutic massage.
Born into a farmer’s family, Dong was diagnosed with congenital amblyopia and turned completely blind at the age of 10. Like many other visually impaired children, she went to a school for the blind and the deaf and learned Tuina, a type of therapeutic massage. Her life back then was like a preset route, but Dong was reluctant to take it as it was and wanted to have more options.
In 2006, she learned about a broadcast training program in Beijing by chance, and succeeded in joining the training. Since then, Dong has deeply fallen in love with broadcast recitation.
Thanks to the development of integrated education, Dong achieved many miracles despite the difficulties. She reached the top level in the Mandarin proficiency test, and won the second prize in a national recitation contest. In 2020, she entered the Communication University of China for her master’s degree in broadcasting and television. After graduation, Dong is now leading a fulfilled life as a teacher and an active streamer on internet social platforms.
Dong Lina, China’s first visually impaired master’s degree graduate of broadcasting and television, delivers a speech at the 2023 graduation ceremony of Communication University of China (CUC), Beijing, capital of China, June 28, 2023. /Screenshot from the official WeChat account of the CUC
It is worth noting that China has nearly 85 million people with disabilities, among whom more than 17 million are visually impaired. Over the decades, China has been striving to develop various ways to safeguard their rights to welfare, education and employment, so that people with disabilities can benefit equitably from social and economic progress, expand their career choices and pursue a better life.
Deng and Dong might be thought of as quite special due to the nature of their careers. But for every ordinary Chinese, they also have an opportunity to chase their dreams in their lives. A migrant worker named Yi Qunlin received an invitation to the 2024 National Spring Festival Gala. Why was he invited?
Yi was a construction worker in Shenzhen and an enthusiastic music lover. One day in April 2023, he found a charity piano at a subway entrance. His son encouraged him to give it a try.
As he was playing The Butterfly Lovers, people present were all amazed. With their encouragement, Yi went on and played more than ten pieces. “I felt that I was recognized by people. Music makes me happy, letting me forget my worries and cares.” he said.
Yi Qunlin, wearing a construction worker’s uniform, plays the piano on the street. /Screenshot of a viral video online
In the following month, Yi was invited to perform in a concert hall for his fellow workers, something he had never imagined before. More surprisingly for Yi, he received an invitation to attend the 2024 National Spring Festival Gala.
As inclusiveness continues to be enhanced in China today, grassroots win respect and recognition from society, and lead a dignified life according to their personality and strengths. Yi earns his living working at construction sites, and he creates happiness playing the piano.
Stories like these are abundant in China today. They tell us how human rights are protected and promoted as China develops. One of the advantages of China’s development model is that it can bring more fruits of modernization to all of its people more equitably, continue to better protect human rights, and strengthen freedom and all-round development. How Deng, Dong and Yi realized their dreams in China is the best proof.
Source: CGTN
Editor’s note: The author is a commentator on international affairs, writing regularly for CGTN and publishing as it is from CGTN. He can be reached at xinping604@gmail.com. The views expressed in this article are those of the author and do not necessarily reflect the positions of Maldives News Network or CGTN.
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