The COVID-19 pandemic has disrupted lives across the entire planet, causing hundreds of thousands of deaths and a global economic crisis. But not all groups of individuals have been affected in the same way: some are highly vulnerable. For example, those with mental illnesses like schizophrenia and bipolar disorder, learning difficulties, and neurodevelopmental disorders like autism.
What is Autism?
Autism spectrum disorder (ASD) is a neurodevelopmental disorder characterized by deficits in communication and social interaction, as well as restricted and repetitive patterns of behaviour and interests. Autism was first addressed in 1943 by Leo Kanner, a Ukrainian-Austrian-American psychiatrist, physician, and social activist, as a disorder in children who had problems relating to others and high sensitivity to changes in their environment. In 2013, the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), established the general diagnosis of ASD, consolidating four previously separate disorders: Autistic Disorder, Asperger's Syndrome, Childhood Disintegrative Disorder, and Pervasive Developmental Disorder. Although ASD seems like a rare disorder, its prevalence has risen steadily.
Autism in India & challenges faced
As April 2nd marks World Autism Awareness Day, it also presents an opportunity to talk about autism in India – an issue that is often overlooked. According to a 2018 study, ASD affects around 3 million people in India. [1] But what’s alarming is that even though there has been a vast increase in the number of cases being detected, most people with autism in India, especially adults, live undiagnosed while many do not often receive the services they require. The disorder can present comorbidities and be accompanied by anxiety, lack of coordination (dyspraxia), learning disabilities, epilepsy, fragile X syndrome, Down syndrome, and immune system disorders. This further hinders its treatment and the quality of life of those affected.
Individuals with autism may have behavioural problems such as social communication deficits, attention deficit hyperactivity disorder, irritability, assaults, and self-harm. These present additional challenges during the COVID-19 pandemic: it is more difficult to receive therapy, practice social distancing and readjust after the interruption of daily routines in return to the “new normal”.
Impact of Covid-19 on India’s autistic population
In March 2020, the World Health Organization declared coronavirus a global pandemic. Soon, children were forced to stay home with the closure of schools. (Many, in rural areas, are still at home.) They received assignments from their teachers daily, while others attended classes via video call. Also, schools across India began broadcasting classes online. But despite this laudable attempt to maintain access to universal education, children who have autism or other disabilities challenges were adversely affected by its absence. Besides, with the healthcare crisis overburdened, children with neurodevelopmental diseases saw their therapies suspended. Likewise, adults with autistic conditions who require regular outings have faced a harrowing time. Staying home in confinement causes them acute anguish and nervousness. It has been a tough time not just for them but also for their family members.
The pandemic also forced governments to decree hygienic-sanitary regulations - wearing masks, using disinfectants and taking other precautions. As a result, unwanted sensory stimuli also increased - smell of bleach, touch of the hydrogel, proprioceptive sensation of a mask on the face and changes in people's image. All of this led to inadequate sensory responses and an increase in ASD-associated conduct disorders.
For some people with autism spectrum disorder, confinement was not stressful. On the contrary, it lessened his anxiety. Having to be home out of obligation, they did not have to worry about their social interaction difficulties. In other cases, since they did not have to go to their educational centres, they did not experience harassment or derogatory comments. This apparent improvement occurred especially in people with fewer learning or communication difficulties. However, the benefit is futile; the socio-emotional skills they had acquired previously were lost by not being put into practice.
Explaining the situation
As responsible citizens of a democratic nation, it is our duty and an honour to ensure people with autism can enjoy equal opportunities and live happy, independent adult lives in a liberated society. But more importantly, that they also understand the new normal, aka a mid-pandemic world. And it all begins by educating them.
Among people with autism spectrum disorders, we can find many differences in their intellectual and verbal abilities. For this reason, the resources and supports must be individualized, adapted to the needs of each person.
A successful tool for explaining social situations to people with ASD is social scripts. Through these scripts, we can explain what has happened and what are the new adaptation routines. For this, images (photographs, pictograms) and written words can be used, jointly or separately, depending on individual needs.
Following a routine is a key aspect of an autistic person's life. Accordingly, 'visual agendas' should be used to educate them about new daily activities. These agendas can help them internalize new routines; each can be broken down into simple steps using photos or pictograms. This way, they understand that you have to put on a mask before going out, wash your hands frequently, use hydrogel and keep your distance from other people.
An added difficulty is that the regional situation and the rules vary from time to time. For example, a 12-hour lockdown might take effect soon. Hotels, restaurants and other businesses may remain closed for seven days. Such unforeseen circumstances can complicate organizing and learning routines for people with ASD. This is why we, the people, need to spread awareness among our friends and family.
A person with autism may not understand prevention protocols. If there is a suspicion that someone you know is autistic might have COVID-19, it would be best to do the test at home. This way, behavioural problems and the risk of infecting others decrease. If they need hospitalization, it may be necessary to sedate them to prevent self-harm. And, of course, have professionals who are experts in ASD who can accompany them in health centres.
COVID-19 has also caused an increase in stress and anxiety in parents and caregivers, who in many cases must combine their work and family obligations. Family members, neighbours and friends must assume the responsibility of guardians, workers and specialized therapists, all rolled into one. After all, teleworking and caring for a person with ASD is a challenge!
Caring is the way to move forward
In the early days of the 2020 lockdown, orders were issued to ensure the well-being of pets. How long did lawmakers take to take into account people with special needs? How long did it take many citizens to understand that their walks were a necessity and not a whim? Clearly, we cannot and should not be dependent on them when we hold control among ourselves.
Let us not repeat the same mistakes again. Not religious supremacy, not financial superiority, but caring for each other, for people with physical and mental disabilities, makes us good humans.
Yes, it is necessary to develop care and action protocols to support people with ASD while this pandemic situation persists. Yes, we need to formulate innovative methods of supporting families and “caring for caregivers” in mind. But above all, an increase in empathy and solidarity with people with these disorders and their families is what’s necessary. Now more than ever.
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2018 Statistics for Autism from : Smgebooks