How the end of school marks a new challenge for these kids

For Brisbane mother Bridget Cullen, the years after her autistic son GC* finished school were harder than anything she had ever experienced before.

GC has level 3 autism and intellectual disability. He is non-verbal and requires constant high-level care.

Cullen says school offers her son purpose and structure. He discovered “the absence of nothing” without it; from meaningful activity to adequately qualified carers.

“I clearly appreciate that schooling cannot continue indefinitely,” he says.

“There’s just change. And like many autistic people, change isn’t always a great thing because it’s at transition points where there are challenges.”

Cullen speaks to highlight the ongoing challenges faced by many families of high-need neurodivergent children. This comes as the disability care sector is under national scrutiny, cuts are being made to the NDIS and Frameworks that support autistic children It was announced last month.

“I was surprised to see how difficult it was to fill the hours once spent in this purposeful, school-based activity,” says Cullen, the law professor.

“Once a person living with Level 3 autism reaches adulthood, finding care to cover those hours and ensuring parents continue to work is extraordinarily difficult, even if funds are available.”

Cullen’s son was in one of the first purchases AEIOU FoundationIt is an intensive early intervention learning program launched in 2005 for young children with autism.

“It made my life so much easier because he was getting therapy and going to prep… and it meant I could keep working,” she says.

From there he moved on to Western Suburban State Private School in Durack, where Cullen said he thrived: “The school understood his needs and he developed a really high level of familiarity with that environment.

“He knew his teacher, and she knew his quirks… and it made me feel good to know he was in a safe place, a place with community.”

People with autism face significant barriers to employment and post-school higher education; Data from the Australian Bureau of Statistics shows that around 50 per cent of working-age autistic people are in the workforce.

same data It shows that the unemployment rate among working-age people with autism is 18.2 percent; this rate is more than twice the rate for people with disabilities and almost six times the rate for people without disabilities.

Day programs are popular for young adults with autism who are unable to work. Cullen says he tried a number of different programs for GC when he finished school, but found none to be a good fit.

As his behavior became difficult to manage, she had to move him into supported living with 24-hour care.

Cullen estimates that only 8 per cent of NDIS providers are qualified to provide the high level and highly regular care her son needs.

“I hate to say it, but if a worker had to choose between helping my son who pinches, slaps, bangs his head against walls and floors, and throws objects, and caring for a higher-functioning person without engaging in challenging behavior for the same hourly wage, it’s clear what most workers would choose,” she says.

Psychiatrist and director of the Queensland Center of Excellence for Intellectual Disability and Autism Health. The transition from school is a “universally challenging time” for neurodiverse and disabled children, says Cathy Franklin.

“That person can always be home when school is over. This is a drastic change.” [for families]”he says.

“We see people developing mental illnesses and their behavior deteriorating.”

This unchecked process forces many families like Cullen to move their children into costly, supported living.

“The saddest part about this is that it’s not what the family wanted, but they’re really completely exhausted,” Franklin says.

“And when someone develops more severe, challenging behaviors, it can be really difficult to find caregivers and have a quality life for them.”

Brisbane mother Kathy Harris looked at a variety of day programs for her son Rory when he finished high school, but described most as “adult minded”.

“Have a good day programs try to do more than just exist and babysit,” he says, “but after a while [the same activities] It’s getting boring.”

Worried that Rory, who has level 3 autism, would regress, Harris established her own program in 2021: Campus Life.

“The idea behind this was: [neurodivergent adults aged 17 to 25] “He would go to a college campus where there were other young people his age and have an experience that was part day program, part extended learning,” he explains.

Now in its fifth year, the program has found a home at the Australian Catholic University’s Nudgee campus and is supported by university students on placement.

“We take paramedic students, exercise physiology, occupational therapy, you name it,” Harris says.

“We give them tasks to do. Most of the time it’s observing and recognizing.” [the people in the program] and see if there is anything that might help that person engage more.”

The model has been successful, but with ongoing cuts to the NDIS, Harris says keeping the program afloat is a constant struggle.

“We already see the difference in our young people coming from school.

“People are getting much smaller packages than the youth who come to our program.”

*Not real name

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