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What is it like to have a child with autism?

One in 100 children have some form of autism, but what is it like for their parents?

Image: Autism via Shutterstock

AROUND ONE IN every 100 children is born with some form of autism.

For children born with the disorder, there is an increasing, but still deficient, support network and awareness.

For parents of those children, it is a constant challenge, but one that many say comes with its own rewards.

A Facebook post from a mother whose two boys have autism was widely shared at the start of the month, to mark World Autism Awareness Day.

“When Autism was first mentioned to us, we were scared to death,” the mother says, echoing what Steve* says.

He was young when his son was born and says that while he was adjusting to becoming a dad, he received a bombshell.

“There’s no point saying that it wasn’t a shock or that you’re immediately ok with it. You worry.

“The doctors tell you about all of the support available, but that in itself sounds like a lot of work and doctors visits and struggles.”

Steve’s son is now eight and is in mainstream school, but that comes with its own challenges.

“It’s hard to ask kids to understand something as complex as autism. Luckily, the school are great.”

Other people

Of course, the reaction of children isn’t the only worry. Says the Facebook post from the Cavan mother:

“In the early days the hardest part was often the responses from other people. When we would tell them our son was going through assessment for autism they’d say “There’s nothing wrong with that child, sure isn’t he great there playing away on his own, quiet as a mouse”.

“You almost felt you were making it up, making it worse than it was. And it creates guilt in you for believing that something might be wrong. People said to me “He doesn’t look autistic” as if a child with autism looked a certain way. And I was even told “he’d grow out of it” which six years later he definitely hasn’t.”

Steve says the same.

“The problem I find is people think they know what autism is. But my son is very calm most of the time. People think he must not be autistic because he’s not like a guy they’ve seen on tv. But the reality is very different.”

The challenge

Having a child is a challenge, but autism multiplies that.

“The things you take for granted in your daily life, are often the most challenging parts of our day, rigid routines, irrational fears, terrible meltdowns and restricted diets are all the norm for us. 

I could write all day about the tears from my kids when they didn’t get invited to classmates parties or when another kid told them they were acting or speaking weird, listening to my son cry about being bullied in school, or going to endless meetings with the school to have his voice heard.

“Or the feeling you get when you notice strangers in a shop looking at your son as he jumps up and down flapping his arms in excitement.”

Steve agrees.

“Simple things become battles. Things that my friends don’t worry about with their are my daily worries. That frustrates me, but it’s something you learn to live with.”

Both parents say that they would encourage other parents to talk to their children about autism.

Says the Cavan mother:

“Believe me exclusion and bullying does more damage to the child’s self esteem and self worth than the autism ever did.

My boys have autism; they are different but not less.

Read: Go blue: Lighting up for World Autism Awareness Day

Read: Autism begins during pregnancy, says new US study pa

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