1 December 2019
Don’t be afraid of autism
When Jack Rogerson turned two his parents threw him a birthday party. They invited their family and friends around and transformed their brick-paved courtyard into a toddler-centred playhouse with toys and a plastic slide and a Thomas the Tank Engine that was big enough to ride.
Only Jack wasn’t interested. No matter how much his parents tried to cajole him, he mostly retreated to the side lines, preferring repetitive, solitary activities such as pulling leaves off a hedge or lining his toy cars up in a row.
“Lots of our friends and family were concerned, but we were in complete denial,” said Jack’s mother, Nicole Rogerson. By the time Jack turned three, however, his parents accepted there was a problem with their son. “We had difficulty getting his attention, and he would throw incredible tantrums if something unexpected occurred,” she said.
Nicole, and her husband Ian Rogerson, took Jack to a series of paediatricians who diagnosed autism. Autism spectrum disorder (ASD) is a neurodevelopmental disorder that is characterised by persistent deficits of social interaction and restricted, repetitive behaviour. It affects about one in 70 people in Australia, a figure that has been steadily increasing, although this increase is thought to be due to improved monitoring and better recognition of the disorder, rather than an actual increase in the prevalence of ASD.
Those on the mild end of the spectrum can live independently and maintain regular employment. However, up to 70 per cent will have some degree of intellectual deficit, often being overly sensitive to certain audible and visual stimuli, and some degree of focal neurological deficit will be present in up to 60 per cent. Other common coexistent pathologies seen in those with autism include epilepsy (30 per cent), attention deficit disorder (up to 50 per cent), and sleep disorders (80 per cent).
The cause of autism is unknown but likely multifactorial. Both genetics and the environment are thought to play a role. Boys are four times as likely to be diagnosed as girls.
There is no blood test or brain scan that can diagnose ASD; rather, it is done by studying an individual’s developmental history, observing their communication skills and social interactions, psychometric testing, and examining for neurological deficits. In Australia, only licensed paediatricians, psychiatrists and neurologists are authorised to make an official diagnosis of ASD, which is required in order to get access to National Disability Insurance Scheme (NDIS) funding.
Adelaide-based psychiatrist Harry Hustig says a diagnosis of ASD is a mixed blessing. “To some extent it explains why the child is different to most other children, and certainly it reduces the guilt that parents have over not being able to emotionally connect to this child.”
Professor Adam Guastella is a clinical psychologist and researcher at the Brain and Mind Centre, University of Sydney. He says that obtaining a diagnosis of ASD can be a costly and lengthy process for parents. “If people don’t have the ability to pay for private specialists, it’s not uncommon for them to wait for up to a year, or even two years, for a public service assessment of their child,” he said.
National guidelines for the diagnosis of autism spectrum disorders in Australia were released in 2018. While the guidelines provide much-needed consistency for the assessment and diagnosis of autism across all states and territories, the most important question are still left unanswered.
Occupational therapist Hayley Forbes works for Fired Up People, a group of health professionals that provide occupational therapy and speech pathology services to those with ASD. She said early intervention could provide families with the skills they need to best support their child. “Families that have begun therapy when their child was young, often understand their child’s needs better and have much better outcomes,” she said.
Nicole Rogerson, who is now CEO of Autism Awareness Australia, is a passionate advocate for early intervention and believes it can drastically change the outcome for a child with ASD.
“Many of them will have deficits in communication and social skills, but we know that those kinds of things can be taught,” she said. “By getting that important early intervention, and getting that support through school, you’re giving your child their best chance.”
Other signs to look out for include delayed verbal communication, limited use of gestures such as pointing or waving, obsessive tendencies, being overly sensitive to certain auditory and visual stimuli, and repetitive behaviours like spinning, rocking, or sucking on non-edible objects.
Diagnosis can be made from the age of 18 months onwards but no matter what the age of the child, or even for adults, Prof Guastella said it was never too late to get a new diagnosis and start the necessary interventions.
“The field is changing to better respond to the family’s needs,” Prof Guastella said. “There’s a massive shift away from just labelling someone with autism and saying they’ve got problems, to now saying, ‘Actually, this person has a whole range of skills and strengths.”
State education departments now offer a range of resources to help support children with ASD ranging from allocating a “calm zone” in the classroom, to implementing a structured teaching plan, and providing a quiet room where the child can complete their tests.
Those on the spectrum will often excel in jobs that require repetitive tasks in relative isolation such as information technology, game design, art and photography, electrical and motor mechanics, research and laboratory work, cleaning, landscape gardening, mathematics, accounting and actuary.
After graduating from Year 12 in 2014, Jack, now in his twenties, completed his chef apprenticeship. He wishes other people would understand that people with ASD are like everyone else. “Our brains just think a little differently,” he said.
Nicole Rogerson wants parents to have courage. “Don’t be so scared of autism,” she said. “Parents get so fearful when their child is diagnosed with autism but it’s not the end of the earth. It’s going to be a different life to the one you were expecting, but there’s going to be an enormous amount of benefits that come with it as well.”
More information about autism can be found at: www.autismspectrum.org.au/
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