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Autism Is Taboo In Our Culture. Our Daughter’s Diagnosis Made Us Face It.

Too many immigrant South Asian parents are programmed to reject disabilities — our family wanted to change that.

For a long time, our daughter’s lack of understanding about personal space caused my wife and I extreme anxiety. Her apparent tantrums at malls and family gatherings made it difficult for us to go out into public. We became accustomed to receiving judgmental stares from other parents. My wife remembers parents yelling at her when our daughter veered too close to their kids or acted pushy on the playground. The best she could do is apologize and leave the park as soon as she could.

I admit, I did not take our daughter’s outbursts very well. But my wife is the stronger one — she never once gave up on taking my daughter into the public, and through her resilient efforts we began to see improvements in her social interactions.

From left to right: the writer, his youngest daughter, his wife, and his eldest daughter.
From left to right: the writer, his youngest daughter, his wife, and his eldest daughter.

Around 2014, at the urging of staff at our daughter’s school, we sought help from the medical community to help identify our daughter’s behaviour. In a Mississauga hospital room, a group of experts diagnosed our daughter with Autism Spectrum Syndrome (ASD) and Attention Deficit Hyperactivity Disorder (ADHD). Unaware of the discussion, our tall and beautiful seven-year-old daughter continued to play with toys in the children’s area, as the medical professionals eyed us, possibly trying to read our reactions.

My wife and I bottled our emotions and blankly nodded in agreement with the diagnosis. We made it clear that we did not plan to put our daughter on any ADHD medications, as her school’s administrators had suggested; the doctor was on board. But inside, our hearts were breaking. We silently prepared for the fact that our child’s diagnosis could mean a lifetime of struggle. A new source of anxiety welled up: how would we navigate our South Asian community as parents of a special-needs child?

“I had little success explaining her medical condition to them, and was frustrated by their misplaced pity.”

Our community in Ontario’s Peel Region is demographically Punjabi Sikh. Disability is a taboo topic not openly discussed in our culture, often linked to feelings of shame. There is a lack of awareness around autism, mental health and disabilities. Many elders in our community would explain away our daughter’s behaviour as the product of “bad parenting” or being “spoiled;” others would simply deny that our daughter’s condition exists. I had little success explaining her medical condition to them, and was frustrated by their misplaced pity. As parents, it made us feel helpless and isolated.

In those early days we took every opportunity to educate ourselves. Autism is a neurological disorder that affects how the brain functions, we learned. The cause is unknown. A person with ASD may have difficulty with social situations or repeat certain patterns of behaviour, and many have sensory difficulties. Knowing this helped us embrace our daughter for her whole self.

Too many immigrant South Asian parents are programmed to reject mental-health issues and disabilities. Over the years we have encountered South Asian parents who would argue with social workers and therapists over the very existence of ADHD or autism. One pair at an informational session for parents of special-needs children threatened to take their child back to their country of origin rather than stay and have their child “labelled” with a disability. Such attitudes deny children much-needed supports.

Sharing our family's story helped our community better understand autism.
Sharing our family's story helped our community better understand autism.

Resources were few and far between. We found one South Asian autism support organization active in Scarborough, east of Toronto, but nothing near our own community. We mostly relied on the help of government agencies and multiple private therapists. We were surprised by just how many South Asian professionals worked in the field — if only their level of awareness were more common in our community.

In 2018, my wife and I agreed to go public with our family’s story. I informed myself by attending mental-health and disability-related events, and listening to the experiences of people living with autism. I saw how they helped others understand, and knew I wanted to bring that to my Punjabi Sikh community.

I started with family and friends first, discussing our daughter’s diagnosis and educating them about our daily experiences of living with autism. Our openness on this issue was something they had never experienced before. They listened and acknowledged our experience, which gave us encouragement.

Guided by the founding principle of the Sikh faith — “seva,” or selfless service — we were inspired to bring the rest of our community into the conversation. In April 2019, we launched the Sikhs for Autism awareness campaign on social and local ethnic media. Sikh parents of special-needs children started reaching out, surprised and thankful to hear the topic of autism discussed in their native language. I could hear the relief in their voices. As a parent of an autistic child I know what they felt: a sense of validation, an acknowledgement that they are not alone, and hope that their children will be accepted for who they are.

Soon, I started seeing signs of change in our community. Parents more actively look for support after their child is diagnosed with ASD, and are more willing to share their experiences publicly through social media. Many parents of children with autism in our community are now fast friends, brought together by our common challenges and triumphs. Our schools have started paying more attention to special-needs students and have implemented new teaching methodologies to better accommodate them. People’s attitudes toward my daughter are much more accepting, which has given her a boost of confidence to approach social situations. We aren’t there yet, but a future without the stigma of autism feels possible.

My daughter will turn 14 this year. Going to a park is far less challenging, and her tantrums seem like a thing of the past. Her verbal communication with her peers has moved up many levels and she even makes attempts to be personable with them. She loves K-pop, and dreams of meeting BTS one day. My daughter’s experience of autism has taught all of us to reserve judgement, to listen, and to seek to understand; she has taught me to be brave and patient. As Coach Elaine Hall once said, “It takes a village to raise a child. It takes a child with autism to raise the consciousness of the village.”

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