MELBOURNE: Almost one in three families is waiting more than two years for a diagnosis for their autistic child, significantly more than a decade ago, a new survey finds.
And getting the right support at school for children with autism is a parent or carer’s biggest worry, it concludes.
The survey of 1200 parents and carers, by Autism Awareness Australia, finds only 26 per cent had received an assessment for their child in under six months. That is down from 58 per cent in 2014.
AAA chief executive Nicole Rogerson said the delays were attributable to long wait times to see specialists who can make the diagnosis, both in the public and private systems. More than three in four of those surveyed paid for a private diagnosis, which in some cases can run into the thousands of dollars.
The survey found 32 per cent of families waited more than two years for a diagnosis, compared to fewer than 20 per cent in 2014.
“A delayed diagnosis leaves children without the critical early interventions that can put them onto their best path,” Ms Rogerson said. “If young children face multiple barriers to timely diagnosis, miss out on appropriate early intervention and then struggle to receive the right support at school, is it any wonder that 40 per cent remain unemployed in adulthood and 78 per cent still live at home?
“We know the earlier we intervene with support the better outcome they will have.”
The survey also found that 85 per cent of parents and carers said getting the support needed at school was their biggest challenge. This is a particular issue as the federal and state governments have for months been locked in negotiations over which layer of government provides future support for people with less profound disabilities, including many with autism and developmental delay.
These new “foundational supports”, to be delivered in mainstream settings such as schools, early learning centres and the community, were not yet bedded down even as some children with autism were losing their NDIS packages, Ms Rogerson said.
“Sadly, almost two thirds of parents and carers do not know how they will continue to fund critical early intervention services if their child is not fully covered under the NDIS,” she said.
But NDIS Minister Amanda Rishworth last week said the rules on who could address the National Disability Insurance Scheme had not changed. “There have … been no changes to eligibility criteria, including for children with autism,” Ms Rishworth said.
The survey participants included parents and carers of children and adults, from less than four years old to older than 35. The most common age of the child was nine to 14.
About 30 per cent of the children had been diagnosed between the ages of three and five, and a further 21 per cent between six and eight. Fewer than 10 per cent of those diagnosed received a Level 1 autism diagnosis. Levels 2 and 3 have been almost automatically eligible for an NDIS package.
“The number of NDIS participants as a proportion of the Australian population peaks between the ages of five and seven, with approximately 13 per cent of five to seven-year-old males and 6 per cent of five to seven-year-old females being NDIS participants,” the latest NDIS quarterly report says.
University of Adelaide education expert Deborah Price said families were facing significant barriers and delays in finding support for children with disabilities such as autism, both inside and outside the NDIS.
“These include equity, extensive and complex system processes, lack of individualised support and communication, inflexibility in resource allocation and timeliness of assessments, reviews and funding; all of which impact on the child and their schooling,” Dr Price said.
The pressure on school resources was another issue hampering the best outcomes for autistic children, she said. “Increasing workload, including national curriculum and assessment priorities … and administrative responsibilities, are impacting on opportunities to build deep connections and personalise learning for the increasing diversity of learners within the classroom,” Dr Price said.
“Further adding to this is the high turnover of staff in schools.”
