03/31/2016 13:16 EDT | Updated 04/01/2017 01:12 EDT

Real Talk on Race: 'Race has taken on new meaning,' says mother of 2 sons with autism

CBC Montreal's series Real Talk on Race inspired SaziniNzula to speak out about her own experience.

"Race has taken on new meaning" as a mother with two sons who both have autism, Sazini Nzula said. 

Nzula is the first to admit that despite being highly educated – she has a PhD in microbiology – she had no idea what autism was until her son Ethan, now 9, was diagnosed as a toddler.

"His speech is very, very, very delayed. He has a hard time with noise or light," she explained.

"If we go to the grocery store and I forget his headphones that cancel out noise, he would have a difficult time."

She faced a steep learning curve after Ethan's diagnosis, but Nzula says she was more prepared when her second son, Jayden, now 6, was diagnosed.

Stigma, isolation, shame

What Nzula was not prepared for were the attitudes and beliefs she would encounter among other Montrealers of African descent.

"For Africans, autism is associated with stigma, with isolation, with shame," she said.

Nzula was born and raised in Zimbabwe, then lived in the U.K. for several years before moving to Montreal in 2004. She now lives on Montreal's West Island, in Kirkland, with her husband and their two sons. 

Nzula recalls her shock when once, at a party, another Montrealer of African descent asked her to hide the story of how they'd met.

They knew each other from a special-needs support group, but the other parent did not want to share that with other Africans at the party, Nzula said.

"Just tell them we met at the pool," the other parent urged Nzula.

"Their child was high enough functioning that they could hide the fact that their child had a diagnosis," she said.

"They were happy to talk to Caucasians and anybody else, except Africans," Nzula said.

Nzula said the belief that Africans do not have autism is so pervasive, people often blame her sons' autism on the fact that her husband is not African.

"That's been a block for me to talk to other Africans because they always think, 'Your kids have autism because they're part white,'" she said.

Associated with a 'curse'

Nzula says the stigma she's encountered is not limited to autism: It applies to mental illness and all forms of disability.

"There's a general belief of it being somehow associated with a curse, therefore it could spread to the people around you. So then they don't want to hang out with you," she said.

Nzula finds that frustrating. She remembers growing up in Zimbabwe with the adults around her looking out for all the children in the neighbourhood.

"But here, people [of African descent] aren't that interested in helping the parents... and that's not very African," she said.

"We look after every child... Why should these kids [with autism] be left out of the African village that raises every child?" she asks.

Nzula says she and her family has lost some friends over the years, but at this point, they have a solid network of supportive people in their lives.

Helping other families

Nzula's goal now is to help other families that may be feeling isolated.

She's teaming up with a friend to start a support group for parents of African descent who have children with autism, "letting them know autism exists amongst Africans," she said.

Nzula will try to dispel that myth with the help of a friend who is also of African descent and has a child with autism, by talking to African Montrealers at an event called Marché Africain, taking place from April 14 to 16 at 425 Beaubien Street East in Montreal.

They plan to distribute information about autism in hopes of connecting with other families who are living the experience and to raise awareness about autism in general.

She says it doesn't help that you never see black kids with autism in the media.

"So you think, 'No, it doesn't happen to us,' because you never see it," she said.

"I want people to know it does happen, and we should talk about it."