I could hear laughter through the door, but I was taken aback. What did I expect? That because the parents I was about to meet had two autistic sons, they would be sombre and serious? Yes, I did. And I admit to this judgmental presumption because I was so powerfully proven wrong.
When the door finally opened, and Sumreen Rais and her husband Rais Azam let me into their world, I was struck by infectious smiles and unending enthusiasm. Their two sons, Zeeshan, 9, and Shahzaib, 13, wandered around the room, every now and then coming and touching my handbag or my hair—their way of saying, ‘Welcome, we’re happy you’re here.’
I felt ashamed, wearing my unbiased journalist mask and falling into the same trap I was telling others not to. As South Asians—and as humans—we judge, we presume, we blur what’s in front of us with our expectations.
But Sumreen and Rais were forgiving. As Pakistani Muslim parents of two autistic children, they were familiar with judgements far more severe than any I had displayed.
Until a professional assessed their first son, they had never even heard the word autism.
“I was surprised,” Sumreen said. “For me it was a new word. I thought, ‘OK what can be the cure for this?’ I was taking it as a disease. I wasn’t understanding it at the time.”
Family members and friends offered their own explanations, one of which was the family’s move from Pakistan to the United Arab Emirates.
“People misguided me by saying, ‘He lives alone, you have separated from us completely,’ so everyone said because you don’t have social things happening the child is getting a defect. People also said, ‘Maybe it’s because he’s the only child.’”
Then Rais suggested having another baby. “People advise that if there’s two then they’ll have a discussion between them. They’ll talk to each other.”
But their second son was also autistic. And the blame shifted to Sumreen.
“You know the families we belong to are orthodox. People blamed me: ‘You must not be talking, you must not be teaching them.’ My first torture was that my child was not talking. Second that people who know nothing, who don’t even know about autism, start giving advice.”
And this not knowing, this complete lack of awareness, is the one trait of the South Asian community that makes it difficult for parents like Sumreen and Rais to be accepted and understood.