Health

World Autism Awareness Day: explaining a pandemic to individuals with special needs

World Autism Awareness Day, April 2: Structure and routine are usually sacrosanct for individuals with autism. So it is imperative to talk to them about what they can expect during this phase to reduce their confusion and anxiety.

World Autism Awareness Day, April 2: Structure and routine are usually sacrosanct for individuals with autism. So it is imperative to talk to them about what they can expect during this phase to reduce their confusion and anxiety.   | Photo Credit: Visual Generation

How to explain the impact of coronavirus on everyday life for individuals with autism and reduce their anxiety and confusion during the lockdown

My 20-year-old brother, who has severe autism, lives with my parents. His favourite time of the day is when he is outdoors — on walks, cycling and taking our Labrador out for his night stroll. This helps my parents manage his energy and keep him engaged. He and my dad love going out for drives, and often hit the mall on the weekends to get some fries at McDonalds. However, the current lockdown because of coronavirus has derailed this schedule.

Watch | World Autism Day: Explaining the pandemic to those with special needs
 

Structure and routine are usually sacrosanct for individuals with autism. With schools, therapy centres, malls and their favourite places being shut, the usual sense of familiarity is lost. Which is why it is imperative to talk to children with special needs about what they can expect during this phase to reduce their confusion and anxiety. “For persons with Autism Spectrum Disorder (ASD), any event that is ‘out of the ordinary’ can become an enormous challenge,” explains Sushama Nagarkar, founder of Mumbai-based Yash Charitable Trust, that works with young adults with neurodiverse needs. “Proactively replacing the schedules with activities as similar as possible to those that existed earlier always helps. It is also important to put into context what is happening that is causing the current disruption,” she adds.

It might be challenging and feel unnecessary to deconstruct the situation for a special child. A simple, yet effective, way is through the use of visual calendars and social stories — the latter is a common technique to explain a broad and complex concept by over-simplifying the events.

Progress is relative, and parents of autistic children need to realign their goals, not be too ambitious and not try to teach the child too many things in this spare time

Progress is relative, and parents of autistic children need to realign their goals, not be too ambitious and not try to teach the child too many things in this spare time   | Photo Credit: Macsnap

For their eyes

It is also helpful when all changes in their schedule are communicated effectively and repeatedly. A lot of therapists and educators have taken their classes online to help families, but access to behaviourists and occupation and speech therapists may not be the same as before. “Routines are essential and need to be effectively adapted to suit the current scenario. Before we expect our students to start navigating technology, we, as educators, need to ensure that we are equipped to handle this change,” says Shaloo Sharma, CEO of Evoluer Solutions, a centre for neurodiverse individuals in Gurugram.

She also emphasises that technology should be a part of mainstream classrooms so that the children and teachers are ready for the times when e-learning is the only option. We should also be more patient with educators as they are in in for the first time too. And since this is a new experience for everyone, the best way is for the whole support system to work in tandem and be supportive of each other.

Online resources
  • The Special Mom
  • An online community for parents of children with special needs. Every Wednesday at 6.30 pm, they host a live session to share simple calming techniques for the family. Details: thespecialmom.org
  • Forum For Autism
  • A parent support group based in Mumbai. Sharing stories of families who are dealing with the lockdown in different ways. Details: forumforautism.org
  • Nayi Disha
  • An information resource for the neurodiverse. Their latest is a Hindi-language podcast series on autism, available on their YouTube channel. Details: nayi-disha.org

Sangeeta Jain a parent of a special child and vice principal of SOREM, a special school in Chandigarh, agrees. “It is important to adapt the schedules and modes of learning according to the needs of the child and the parents. Parents also need to continue their work from home, and I hope they don’t overburden themselves. This will be a good time to teach the child household chores,” she says. So it is important that parents and other family members stay involved in both education and therapy lessons, so that they can help the child adapt to these classes in different settings and can also work with the child at home. This is crucial, because regularity of learning a skill is key for autistic children, the setback of not practising for a few weeks will be huge and the child will have to start all over again.

That being said, progress is relative, and I think parents need to realign their goals, not be too ambitious and not try to teach the child too many things in this spare time. This will affect the child’s stress level as well as their own, and might cause frustration. However, it is important to sustain the child’s work progress so that he or she doesn’t not fall into a slump and is occupied meaningfully.

During this period, parents often will feel stressed about watching their children the whole time. A good way to manage boundaries could be by planning the time to spend together in advance — decide what they’re going to do with the child and for how long, in order to differentiate their personal space.

Beyond the lockdown

Since social distancing is difficult for families with special needs, guardians can create a back-up plan for day-to-day caregiving in case they (the guardians) have to be in solitary quarantine. Especially for younger children, who are completely dependent on their caregivers, this might mean a neighbour having to step in to provide meals etc. You can also reach out to local volunteers who can deliver groceries and medicines to your house.

Shreya Jain with her brother

Shreya Jain with her brother  

For individuals with special needs who travel independently, and will continue to do so after the lockdown is over, they need to be prepared to take the necessary precautions. This will be a great time to imbibe new habits of wearing masks, cleaning hands regularly and always carrying sanitiser. I reached out to my friend, Viraj (who has autism), who returned to his family in Mumbai when his office in Bengaluru shut. I wanted to know how he was faring: he isn’t good at expressing his feelings, but he mentioned that he is dissatisfied. “I was totally unaware of what I would have to face in such a situation. I realised how people are treated if they step on roads and that made me angry. I am now working for almost the same time as I did in office, except my efficiency has gone down a little,” he says.

None of us know how long this situation will last, but all we can do is be prepared, take it one day at a time, and deal with any issues as they crop up. One last tip that has really worked for me, as a byproduct of being with my brother are several positive reaffirmations that everything will be okay.

Shreya Jain is founder and CEO of Reservoir, a platform that promotes inclusivity for the differently-abled in the Indian societal and legal context.

A letter from the Editor


Dear reader,

We have been keeping you up-to-date with information on the developments in India and the world that have a bearing on our health and wellbeing, our lives and livelihoods, during these difficult times. To enable wide dissemination of news that is in public interest, we have increased the number of articles that can be read free, and extended free trial periods. However, we have a request for those who can afford to subscribe: please do. As we fight disinformation and misinformation, and keep apace with the happenings, we need to commit greater resources to news gathering operations. We promise to deliver quality journalism that stays away from vested interest and political propaganda.

Support Quality Journalism
Recommended for you
This article is closed for comments.
Please Email the Editor

Printable version | Jun 2, 2020 1:52:25 PM | https://www.thehindu.com/sci-tech/health/world-autism-awareness-day-2020-how-to-reduce-anxiety-and-explain-the-coronavirus-pandemic-to-individuals-who-have-autism/article31233088.ece

Next Story