Ricky Stuart opens up about autism and his daughter Emma

NOT so long ago Ricky Stuart was in McDonald's with his daughter, who is 14, waiting for her to finish her thickshake. It was time to go and even though she still had a little of the shake left, he told her it was time and got up to leave, and this is where life takes a left-hand turn.

Emma Stuart was nowhere near ready to go so, in protest, she picked up her shake and threw it all over her dad. Imagine the looks the people gave. Milk everywhere, the daughter of a high-profile footballer who is now a high-profile coach.

Rather than go crook on her or discipline her, Stuart spoke quietly and then he walked his little girl out with all those stares in his back.

What he couldn't say, what he wouldn't say, because it has never been his way to explain, was the reason why.

"It wasn't fair on her as a kid," Stuart says.

His daughter is autistic.

She has not spoken since she was born, except for a low hum for "mum", and "nan". She has never said "dad". She will never speak, never live a life we call normal.

Stuart has never spoken publicly about his daughter's condition for several reasons. Our reasons why in life are always personal, and rarely perfect but, mostly, it fits his personality. We believe we know Stuart because we see him writhing in the coach's box and believe he is letting us see all there is. We watch him compete, his ambition white-hot, and know there is nothing left to give. We hear him speak, his phrases so light on coach-speak we're sure there is not a secret being kept.

Yet who knew this? Or what his daily life must be?

As a coach, he preaches "ownership" of the result, and so raising his daughter at home is no different. It is about getting on with it, and doing the best with what you have. Even now, talking for the first time, his stipulation is: "We don't want sympathy."

And when you get around to asking why - why now? - his reason to talk is his own.

When he thought back to those stares in the restaurant, he says, he couldn't shake the way people looked at his daughter. Like she was spoiled ... the girl of a first-grade footballer, living a life of entitlement.

His daughter didn't deserve that, he says, so he decided to talk.

People will still make up their minds, only now they might be a little more enlightened.

In many ways, the autism diagnosis two years ago has freed Stuart and his wife, Kaylie, to say nothing of what it has done for Emma.

Now properly diagnosed, it has allowed them to enrol Emma at Giant Steps, a specialist autism school at Gladesville. She starts tomorrow. It ends the frustration of years spent struggling with a diagnosis that was incomplete and didn't address what they needed and which provided very little hope.

"Back then the neurologist said he didn't want to label her," Kaylie Stuart says. The specialist told them she suffered Global Developmental Delay.

"They just said there's part of her brain that doesn't work and that it wasn't going to rejuvenate or come back," Stuart says.

Kaylie had known almost from the start that there was something amiss with their daughter. "All her milestones were delayed," she says.

While autism was considered, she was a cuddly child, which initially helped rule out autism, among other misses.

"Now they know autism is a broad spectrum," Kaylie says. "I was happy when they diagnosed her."

Stuart adds: "It gave us a bit of ground to start looking into areas that we could help her with."

The diagnosis changed so much.

Stuart says he is lucky. His lifestyle has helped. It is a big start over many other families; it's safe to say that almost all of them do not receive adequate government help.

It seems that while money is being splashed around on other electoral issues, the long lines of those needing assistance is not enough of a vote-getter to prompt more than token government assistance.

There are only two respite homes in the Sutherland Shire, for instance, and a long waiting list.

It is simply part of dealing with autism that they suffer their daily difficulties. Like for the past four months, when Emma has refused each day to go to school.

There is no way to reason with a child in these circumstances.

"Kaylie has been practically housebound. Like all mums, her strength has been unbelievable to our family," Stuart says.

Finally he decided enough was enough and physically carried Emma to the car, then into school.

Part of her stubbornness is that Emma is 14, and her hormones are stirring, confusing her on the way to adulthood.

Now they have begun to make progress, Stuart has cleared enough air to start the Ricky Stuart Foundation to help other families in similar situations.

For the past 14 years he has run a charity golf day for children's cancer group Canteen. This year it will be for autism and aftercare. "It's a chance to make something right that's not right," he says.

from http://www.couriermail.com.au/sport/nrl/a-fathers-love-knows-no-bounds/s...