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.
People participate in 'Prabhat Pheri' on the occasion of World Autism Awareness Day, outside Raj Bhawan, on April 2, 2021 in Patna, India. ()

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.
Children participate in drawing activities during the celebration of World Autism Awareness Day (WAAD) in Mumbai, India in 2019. ()

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.

Source: TRT World