When Jack Rogerson turned two, his parents were excited to throw 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 little Jack wasn’t interested in all this. 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 that there was a problem with their son.
“We had difficulty getting his attention, and he would throw incredible tantrums if something unexpected occurred,” said Rogerson.
Rogerson and her broadcaster husband Ian Rogerson of “Jono and Dano” fame, took Jack to a series of paediatricians who diagnosed him as having autism.
Autism spectrum disorder (ASD) is a neurodevelopmental disorder that is characterised by persistent deficits of social interaction and restricted, repetitive behaviour. It affects approximately 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 are able to 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.
Obtaining a diagnosis
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.
A national guideline for the diagnosis of autism spectrum disorders in Australia was released in October 2018. While the guidelines provide much-needed consistency for the assessment and diagnosis of autism across all states and territories, they still leave the most important question unanswered.
“Whether a child easily meets the criteria, or just meets the criteria, or just misses out on the criteria, that doesn’t answer the question of what the child actually needs,” Guastella said.
Brisbane-based child and adolescent psychiatrist John Down says helping a child with ASD is very much a team effort involving psychologists, speech pathologists, occupational therapists, physiotherapists and social workers.
“There has been a positive move in recent years to focus less on diagnosis and more on the level of functional impairment the child may have as a result of that diagnosis,” Down said. “We realise now that people learn much better when you try to focus on their strengths and use their areas of strength to help them in the areas they find more difficult.”
Early intervention key
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 says early intervention can 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.
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.”
Signs to watch for
Guastella says parents should be on the look out to see if their child is responding to interaction with others. “It’s about developmental milestones,” he said. “If a child at 18 months of age is not responding to their name, is isolating themselves and not engaging in play-based behaviour, then alarm bells should be going off.”
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, Guastella says it is never too late to get a new diagnosis and start the necessary interventions.
As the child gets older there is occasionally a role for medication, particularly if there is self-harming rituals, or rage and aggression as part of the ASD.
A better future
“The field is changing to better respond to the family’s needs,” 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. The workforce has also been evolving with employees becoming more aware of workers with ASD and providing employment opportunities that take advantage of their strengths.
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.
Hustig says that people on the spectrum are often very employable. “They have less days off than the general population. They actually like the routine. It’s a case of finding them the right job that suits their talents.”
This is certainly true for Jack, who is now 24.
In 2014 he graduated from Year 12 at St Ignatius College in Sydney and went on to complete his chef apprenticeship. Currently he is working fulltime at the Harris Farm Markets in Bondi Beach.
He wishes other people would understand that people with ASD are just like everyone else. “Our brains just think a little differently,” he said.
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.”
As for Jack, he has pertinent advice for others with ASD. “Just be yourself, make your own choices and do what you want to do,” he said. “No one can judge your life.”
The month of April is devoted to raising awareness of autism spectrum disorder.
Autism Awareness Australia aims to increase education and understanding of autism in Australia.
For useful resources, tools and information to help manage the changes to routines, school closures and uncertainty during the COVID-19 pandemic, click here.
Suvi Mahonen is a Surfers Paradise-based journalist. Her work appears in The Australian, the Australian Quarterly, Mamamia and other health and lifestyle publications. Follow her on Facebook, YouTube and online art-selling platform Redbubble.
Feature photo credit: Gerd Altman