Families raising autistic kids, adults need support

Mrs SA semi-finalist 2018, Desirae Pillay with her husband Michael and their daughter Savannah.

Mrs SA semi-finalist 2018, Desirae Pillay with her husband Michael and their daughter Savannah.

Published Apr 7, 2018

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Durban - The mother of an autistic adult would never change her daughter for anything as her child’s quirks and strange ways have made their family uniquely special.

Savannah Pillay, 21, of Johannesburg, was diagnosed with Autism Spectrum Disorder (ASD) at age 10. 

Her family was relieved to have answers to her behavioural patterns.

“When my daughter was diagnosed, she was already a person with cerebral palsy and we did not know anything about autism. 

"We assumed many of the differences we experienced with her at that time were related to her being a person with cerebral palsy,” said her mother, motivational speaker, blogger and Mrs SA semi-finalist 2018, Desirae Pillay.

Pillay said the reality only began to dawn on her when a friend loaned her a book titled Simple Simon.

“It was a story about a mother and her autistic son and their journey. 

"There were so many similarities that Simon and Savannah shared that I had to ask more questions about whether or not she was also autistic. Two years later she was diagnosed with ASD.”

Pillay added that while many families are saddened to hear that their children are autistic, they were glad.

“Everything made so much sense to us after her diagnosis. Our questions were different and our understanding of her began to change. Our expectations were more in line with what was best for her.

“When you are raising a neuro-typical person in a conservative society, it takes a while to realise that what we hold as important, especially as Indians, is not really important in the scheme of things to families like us. 

"Savannah was never going to enjoy fireworks or receiving a hug and kiss from all the well-meaning aunties and uncles at family gatherings. Those experiences were actually painful to her. 

"It took a while to understand that but our family has been amazing at working with us through those issues.”

The mother of three, who is married to Micheal, added that Savannah had worked hard over the years communicate in an effective way, so she could be understood.

“She has spent years working at her physical wellness but unfortunately her body is not as strong as her mind. She is now a person who uses a wheelchair and requires more physical support more often.

“However, even as an autistic adult she enjoys many leisure activities like dancing. She also has an amazing memory and can remember what people have worn to events many years later.”

Pillay added that families of autistic children and adults needed support as they are often left behind when society felt that their lives are too hard or take too much effort.

“I am trying my best every day to understand her and to help others be more tolerant and understanding of differences.”

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