World Autism Day 2020: Autism under a lockdown in India
On World Autism Day, how do we ensure that the rights of people on the autism spectrum are safeguarded in the midst of a pandemic?
Imagine living in a world where routine is everything, where repetition of the ordinary is where you draw your comfort from. Imagine having all that taken away from you in an instant.
Today, this might be easier for you to understand than it would have been ten days ago.
The nationwide lockdown in India has been anything but easy. We’ve all faced limitations, we’re all stretched thin, high strung, and anxious to be free again. We’ve all had to build new routines, and adjust to a whole new lifestyle.
But for some of us, doing that is a whole lot tougher.
On most days, we have a wide variety of stories to choose from when consuming the news. Ever since this pandemic blew up, however, we’ve been focused on one thing only - COVID-19.
Today - April 2, 2020 - was Autism Awareness Day.
How many of us knew that? For those of us who usually use this day as a platform to raise awareness, how many of us remembered this year?
Just the way this was eclipsed in the news today, the plight of thousands of people in India living under the lockdown while on the autism spectrum has been largely ignored.
Today, UN Secretary General Antonio Guterres said, “Universal human rights, including the rights of persons with disabilities, must not be infringed upon in the time of a pandemic.” He said, “We must ensure that a prolonged disruption caused by COVID-19 does not result in rollbacks of the rights of people with autism.” You can read his entire message here.
How do we ensure this, in a country that is largely unaware of what autism is?
So let’s talk about it. What is Autism?
It’s complicated. Autism is, most simply, difference.
According to the UN, autism is a lifelong neurological condition that is mainly characterised by unique social interactions, non-standard ways of learning, keen interests in specific subjects, inclination to routines, challenges in typical communications and particular ways of processing sensory information.
The ways in which people with autism learn, think and problem-solve can range from highly skilled to severely challenged.
Autism comes under the umbrella of Autism Spectrum Disorder (ASD), where spectrum means a range of characteristics. There are four types of ASD – Autistic Disorder, Asperger’s Syndrome, Childhood Disintegrative Disorder and Pervasive Development Disorder, not otherwise specified (PDD-NOS).
But autism is so much more than just that. To better understand Autism, its effects, and how to recognise it, read here.
Living with autism can be incredibly challenging and confusing, particularly in times of great upheaval, as we are facing now. And who, exactly, is protecting people with disabilities in the Corona era?
How can we help?
The majority of children with autism depend on school schedules and home schooling structure to deal with these challenges.
Corona Virus has caused a lot of changes in our daily lives which can be difficult to adapt, especially for kids with special needs. Disrupted schedules can cause anxiety and confusion for special kids and it's important to prepare them well for such situations. Here are a few tips on what you can do to explain the new developments like "Janta Curfew" by the government and shutting down of schools to your child who is differently abled. This video explains the use of social stories and visual calendars that can be particularly useful for kids with autism.
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When dealing with a pandemic of this proportion, it becomes of utmost importance that we help people with autism understand social distancing. When children, in particular, with autism are restricted to stay inside the house, a number of behavioural issues can rise up.
Experts have risen to the occasion to write about how to manage children with intellectual and developmental disabilities during the COVID-19 lockdown. For a full list of do’s and don’ts when dealing with children with developmental disabilities during a lockdown, click here. There is even a free activity book you can download here, with 100 things to do while at home.
And if you are, or know an adult on the autism spectrum struggling to cope with a new routine, click here for some guides and resources.
For anyone struggling to cope with the changes brought about by the lockdown, here are some resources to rebuild structure and order.
However, it’s not just expert voices in the media that are trying to help with this crisis.
Indian online resources
Organisations in India like Nayi Dishai have a wealth of information and community gathered resources on what families with individuals on the autism spectrum are facing in the country right now. For example, this first person account from a parent of a child with autism, detailing in simple steps how to explain the lockdown is equally informative, practical, and heartwarming.
Similarly, the Forum for Autism is a parent support group, where families can share their stories of how they are dealing with the lockdown in their own unique ways.
The Prajaahita foundation has been talking to people living with autism in India, collecting voices from across the country on how each person is harnessing their strengths to meet this new challenge.
Government issued guidelines
Did you know that just three days after the lockdown was announced, the Department of Empowerment of Persons with Disabilities (DEPwD) under the Ministry of Social Justice and Empowerment issued a "comprehensive disability inclusive guidelines" to all the states and Union Territories (UTs) for protection and safety of persons with disabilities in the wake of the Covid-19 outbreak? Read more about the guidelines here.
This was of utmost need, as, according to the Ministry, persons with disabilities are more vulnerable to novel coronavirus (Covid-19) due to their physical, sensory and cognitive limitations.
This pandemic has brought out the best and worst in humanity. There are some who do not completely understand what is being inflicted on them. The least we can do is educate ourselves more, so we might have just a slightly better idea how to make the world a better place for them as well.