Going the distance for autism

CONSIDERING one in 150 children are on the autism spectrum, there are plenty of parents in Western Australia experiencing the challenges that come with the condition.

As a father of three boys, investment banker Karl Paganin is one of those parents.

“It’s a challenge and has an impact on your life, it is a challenge on your family. It is a challenge for a large extent too because it is a real input in, output out,” he said.

“With autism you can be improving that child all the time the more you put in, but it is incredibly tiring and demanding on you and your family. On top of that, Charlie might sit around for two hours playing with his trains, and you start thinking, ‘should I use those two hours better?’.

“Any other child, you would think, let him play with his trains, it is a Sunday between 3pm and 5pm. There is always this over-riding ‘could we be doing more to improve him?’.”

When his son was diagnosed as being on the autism spectrum 11 years ago, Mr Paganin and his wife sought out services that could support their son and their family.

The Paganins began to access ancillary services and discovered myriad smaller organisations attempting to fill gaps in available services for families with children on the autism spectrum.

“What we saw was all these people trying to provide these extra services, predominantly out of frustration; they were parents of children on the autism spectrum trying to solve the problem themselves,” Mr Paganin said.

After witnessing the muddled system for years, Mr Paganin and friends of children on the autism spectrum recognised the need for an a-political organisation that could provide a broad view of what services and support was available.

What emerged from this was Autism West, which acts as an independent source of advice and knowledge on the services available in WA.

“That one-stop-shop of awareness knowledge is a great service for desperate parents when their kid has just been diagnosed with autism,” Mr Paganin said.

“When you get diagnosed with autism, you get given this great gift of hope that if you do lots of intervention services, which are very expensive, that you can’t cure them but you can make huge inroads.

“Your own thought process is, ‘ok, it is my son, it is a fortune, but I am happy to spend it’. But then in fact what you get to is, you can’t find the services anyway.”

Autism West is focused on raising awareness of the impact autism can have on families as well as gaining an understanding of what its market is and what the market wants in terms of services.

It was fortuitous that Mr Paganin’s swimming training partner and former Olympian, Bill Kirby, wanted to organise a swimming fundraising event at the same time as the organisation was founded.

The annual iiNet Team Sprint Cup, a six-by-50-metre sprint at Christ Church Grammar School, is now the key fundraising event of the year for Autism West, and is a competitive playing ground for corporate types.

Set to host the fourth Team Sprint Cup in February, Autism West is hoping to raise $150,000 next year by attracting new teams from mining firms including Woodside and Rio Tinto to compete against the likes of Aspen Group, Gresham Partners and Mr Paganin’s former employer, Euroz.