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Health

Tasmanian family forced to move to Sunshine Coast to access autism specialists for 3yo son

It did not take long for Jessica* to notice her son was experiencing some challenges.

"Harry* had just turned three years old. He had developed quite typically until the age of two, and then we started to see a bit of a regression," she said.

"I started to become concerned as the language development wasn't really coming along. And I became more concerned when he started to develop sensory issues."

Jessica began the process of trying to get her son in to see a specialist in Hobart.

She never expected it to be almost impossible.

"We tried every occupational therapist we could, and they all said the wait times were at least 18 months," she said.

'We were lucky enough to get a few speech therapy sessions, but that office was at full capacity and we couldn't get in as often as we needed.

"I was told there were no paediatricians accepting patients with behavioural issues — we couldn't even get on the books."

Moving to Queensland in six days

After months of rejections, and the birth of her second child, Jessica could not wait any longer for support. 

"I got into a group in the Sunshine Coast and let them know what was happening, and they called me after about a week to do a phone assessment to see if it was autism," she said. 

"From that, they said it was either a developmental delay or autism, and they said if we could get there in a week, they'd enrol us in their program.

"They had psychologists, speech therapists and occupational therapists, it was a whole early intervention model."

For Jessica and her family, it meant making the difficult choice to leave their friends and extended family behind and move to the Sunshine Coast in six days. 

The move was only going to be temporary until Jessica realised there was almost no chance they would make it back to Hobart. 

"I thought a diagnosis would put him on top of the books in Hobart, but they said the wait would still be 18 months," she said. 

"We were told early intervention is key to help set them up for life. If we had waited around in Hobart, he would have been getting worse with no support.

"The system is in absolute crisis mode."

The family has been there for about four months and is grateful for the support specialists, but Jessica said moving across the country was a decision no one should have to make. 

"I feel completely let down by the state. I felt absolutely sick as a mother watching my child regress but not doing anything to be able to help him," she said.

"Moving was extremely difficult — it's not something most people can do.

"There are all of these families that are waiting for years and struggling without support. I just feel so sorry for everyone in that position."

'Extraordinary' wait times and the struggle to find someone

Chairwoman of Autism Tasmania Skie Mitchell said the problems Jessica faced were felt by many autistic people and their families. 

"Certainly from a parent's perspective, there are two parts of the problem," she said.

"The wait times are extraordinary, but as well as being light on with providers as a whole, the other issue is finding providers that actually suit you and your child's needs.

"A lot of the providers that we've approached have a very, very dated knowledge and … don't really have that broad understanding that it is a spectrum.

"Then tailoring the therapy to their strengths and where they need that support. 

"Those in further remote areas in Tasmania have to travel to Hobart and miss out on appointments if they can't, so appointment times are quite difficult to get even if they are available." 

Throwing money at the NDIS not the solution

Autism Tasmania chief executive Donna Blanchard said a lack of specialist services for autism is being felt across the country. 

"When the NDIS came into effect in 2013, it was promised that if you were eligible you would have access to a wide number of services, and you could pick which provider suited you," she said.

"That has not been felt by the autistic community.

"The NDIS Minister, Bill Shorten, has announced a big review of the NDIS, and one of the many concerns is the sustainability of the program. 

"We need to consider whether service providers are purely operating as money-making businesses, or whether they're committed to providing quality services.

"Some people in government thought if you threw money at the NDIS, the market would deliver. But we still don't have the expert specialists available, and we're a long way off from being able to meet that need."

After a Senate report in April recognised that life outcomes for autistic Australians were poor, there was a recommendation for a national autism strategy and this year's federal budget announced $1 million towards it.

Ms Blanchard said it was a positive sign of what was to come.

"We need to grow the disability specialist workforce, but also really develop their skills in understanding autism," she said.

"It's a highly specialised area, and unless you have the highly specialised skills, people won't get the support they need."

*Names have been changed for anonymity.

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