World Autistic Pride Day: Tough times for caregivers to provide an inclusive life...

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For most parents, one of the hardest jobs during the Covid-19 pandemic and the subsequent lockdown has been to deal with their children and their limitless energy. But, for autistic children, the closure of schools has not only disturbed their vital routine but even posed newer challenges for their caregivers. From making them comfortable wearing a mask to instilling the habit of using sanitisers, parents and caregivers have had a herculean task to keep those with autism safe from coronavirus.

On Autistic Pride Day (June 18), here’s what caregivers of people with autism have to share about the unique difficulties they have to face because of the neurodiversity of people with autism, who are unable to easily communicate, socialise or adapt to a change in the environment.

“To guide my brother who is autistic, I used social stories, visual boards, and kept unnecessary information out of the way. The simplest way is to gamify the experience.”– Shreya Jain, founder, Reservoir

“Many individuals with autism aren’t comfortable wearing a mask as their sensory needs are different,” says Shreya Jain, founder and CEO of Reservoir, a Mumbai-based platform that has been connecting families of people who are differently-abled. Shreya’s younger brother Suvrat is autistic, and stays with his parents. “To guide my brother, I used social stories, visual boards, and kept unnecessary information out of the way. The simplest way is to gamify the experience. Since Suvrat does not like wearing masks, so we asked him to wear it in small slots during his favourite activity, which includes walking in our lawn. We have also prepared a small backpack with basic essentials like a mask, ID, help cards, that he has been taught to carry whenever he goes out. Such small steps can help prepare an autistic individual for lifestyle changes post lockdown,’’ she opines.

Autistic people perform morning prayers and yoga at ALFAA (Assisted Living for Autistic Adults), KR Puram in Bengaluru, India.

Autistic people perform morning prayers and yoga at ALFAA (Assisted Living for Autistic Adults), KR Puram in Bengaluru, India. ( Photo: Vivek M/HT (For representational purpose only) )

Seema, a Delhiite, is making efforts to keep her eight-and-a-half-year-old daughter engaged in activities such as drawing, so as to keep anxiety at bay. It’s also a feat for her to explain the concept of social distancing when out for a walk with her young one. “My daughter has autism and associated learning disabilities, alongside issues with speech, and therefore prefers gestures. Because of limited access during lockdown, her autism therapist couldn’t tend to her needs, and we fear it has affected her development... I have also listed my neighbour as my emergency contact in case I have to self isolate. I have also made ensured that my neighbour is informed of my daughter’s routine,” adds Seema.

Sangeeta Jain, a parent to a child with neurodiverse needs, and a vice principal of SOREM, a special school in Chandigarh, says one of the primary ways of ensuring post lockdown stability is to teach the child interdependence skills. “For our students, we have organised online classes to keep them engaged, but we have also done so for the parents who are now keenly vested in the education of their children. Our aim has been to teach kids with autism, simple household chores. This has enabled parents to work from home independently without being overburdened or stressed,” says Jain, who is of the opinion that to prepare kids with special needs, “it’s imperative that different members of the family are involved in the education process so that the child is used to different modes of teaching, and does not slip out of a schedule. My son is used to waking up at 7am, so even during the lockdown, we were wake him up at 7am.’’

Jain agrees that following social distancing can be difficult for families with special needs. “For regular families, forced isolation has been hard, but it also opens up a conversation on how societal exclusion is an everyday reality for people with neurodiverse needs,” she adds.

Author tweets @bhagat_mallika

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