Learning to live - and thrive - with autism

Megan has autism, language delay, epilepsy and a severe sleeping disorder.
Megan has autism, language delay, epilepsy and a severe sleeping disorder. 

Most parents anticipate the day their toddler stumbles across their first words.

For Jo Russell, that special day came when her daughter murmured the phrase "white square" while having a shower.

Megan was five-years-old.

Jo with her son Daniel, who also has autism.
Jo with her son Daniel, who also has autism. 

"I remember running out the back calling the boys saying 'Megan just said white square' and they all came racing in," she said.

"It was a huge moment for us."

"Megan just stops and watches the world and I think more of us need to stop and live in the moment."

The proud mother of three says she is blessed with two children who have been diagnosed with autism – Daniel (23) and Megan (9) who also has language delay, epilepsy and a severe sleeping disorder.

The 50-year-old Kalgoorlie mother is among several parents proactive about Autism Awareness Month.

Autism Association of WA executive manager of business operations Paul Baird says April is dedicated to raising awareness about the complex, life-long developmental disability.

"The aim is to raise awareness and understanding of autism in the community, encourage tolerance and identify some of the challenges and difficulties people and families face," Mr Baird said.


Jo knows about these challenges having battled fatigue, depression, anxiety, weight-loss and stress after her childrens' diagnoses.

However, the scars these battles left behind are also marks of determination and resilience, which spurred her on a 600-kilometre quest five years ago.

These battles began in 1994 when her eldest son, Daniel, was diagnosed with high-functioning autism.

Megan's first words were "white square" - at the age of five.
Megan's first words were "white square" - at the age of five. 

At five years of age Daniel was showing some of the common features of the diagnosis

He had difficulty with social interaction and change, make-believe play and sustained conversation and also had narrow interests.

Jo says she was surprised but relieved when Daniel was diagnosed because until then she believed his behaviorisms were caused by her marriage break-up.

"I was happy that it wasn't because of bad parenting or single parenting," she said.

"In those days there wasn't much information, but I went to work finding out what I could do to help my child and help him be the best he could be."

Comfortable with Daniel's progress and having rekindled her marriage, life was looking good for the Russells.

But Megan's diagnosis was a whole different ballgame – a game she says which nearly knocked the wind out of her.

"It was complete grief and loss, it was like turning around in life and going straight back to the starting line," Jo said.

"A little knowledge can be a difficult thing. I came close to a breakdown and I nearly fell apart thinking s..t she'll be 18 and I'll be 60."

Jo recalls some of the very early years with Megan to be the most difficult.

"Megan couldn't speak, feed herself, she wasn't toilet trained and would be up all night hitting herself and banging her face and hitting us," she said.

"It can be pretty soul-destroying for a family."

Despite sleepless nights and difficult days, Jo says autism has changed her life for the better.

"Megan looks at a leaf for 20 minutes and I'll think whatever and then I'll join in with her and go, 'oh yeah, I can see that caterpillar and look at the way the veins sprawl across the leaf'," she said.

"Megan just stops and watches the world and I think more of us need to stop and live in the moment."

Most of Jo's time is spent working towards a brighter future for her children and the other one-in-160 children diagnosed with autism.

This determination lead her to set off on a 12-day journey five years ago, pushing a wheelchair from the red dirt of Kalgoorlie to Parliament House, to raise awareness of disability in general.

She also walked to raise awareness of a greater need for funding and resources in rural and regional areas.

"I was limping, I had blisters galore and I was wearing a pair of socks by the end of it because I couldn't bear the pressure of shoes," she said.

"If I had to crawl through the Perth hills to finish it, I was going to do it and that's what autism taught me"

With Megan recently celebrating her ninth birthday, Jo still has a long journey ahead, but it is a journey she says she wouldn't change for the world.

"What really comes from having children with autism is how real life is – life is filled with fleeting moments and you have to be out there fully living them all," she said.

"Autism has made my life so much more richer and I honestly wouldn't change a thing.

"My advice to other parents is to never, never, never, never give up."