Remember Priyanka Chopra lighting up the silver screen with her portrayal of Jhilmil in Anurag Kashyap’s Barfi? Weary of strangers, with a slur in her speech, Chopra played an autistic girl, who needed assistance with simple tasks like going to the loo. She is not the only one. Though there is no conclusive data on India, one of 160 children are diagnosed with Autism Spectrum Disorder (ASD) worldwide, according 2017 data from the World Health Organisation, and such kids often suffer from various conditions such as challenging social skills, repetitive behaviours, speech and non-verbal communication.Take 18-year-old Yash, for example, who struggles with routine everyday tasks, like bathing, eating and getting dressed. His mother Pinky, a stay-at-home mom, has to help him out with all of these, including cleaning him after he goes to the loo. Yash, who was diagnosed with autism when he was seven, cannot read or write properly, so his mother uses painting and playing with blocks as means of education.Autistic children are often socially anxious, alarmed by the change in surroundings and find it hard to take to any sort of unfamiliarity. Since they don’t speak as much as their peers while growing up, speech is not as fluid and ends up being slurred. In Yash’s case, since he is also non-verbal, the teenager mostly communicates via touch.
What are the major challenges faced?
The hardest part is that parents are not willing to accept that their child has a disorder. “They will ask you to prescribe medicines and wait for the child to get better,” says Shilpa Arora, Proprietor and Principal, Upasana Special School, New Delhi, and a clinical psychologist from Brooklyn University, US.Disorders lying on the Autism spectrum – such as Asperger’s syndrome – may take a long time to be diagnosed, but most of the times it is said to be diagnosed between three and eight years, provided the guardians take their child to the doctor. In cases such as Asperger’s, people live almost normal lives only to be diagnosed with the syndrome in their 30s, finally understanding why they felt different all along.Abnormal gait, physical inactivity, hunching all the time and muscle tightness are some of the other problems autistic kids face, says Dr Vishal Pratap Singh, neurological consultant at Stanford Superspeciality Hospital, Lucknow. Autistic kids need a sheltered environment with a full-time caretaker to monitor them. Pinky says that though she doesn’t mind caring for her son full-time, it takes a toll on her social and family obligations, that can be challenging.
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