It is a struggle to raise one child on the autism spectrum, especially when you don’t know anything about the condition prior to the diagnosis.
Managing three children with different diagnoses is a marathon. That’s the situation Karen and Jason Hogan found themselves in when they discovered that all three of their boys are on the spectrum.
The diagnosis of Nicole Rogerson’s son Jack took a big toll on her life and her career. But it gave her the inspiration and motivation to create a centre that could help provide resources for parents going through the same struggle.
“Jack was diagnosed in 1999 when he was three years old.
“After watching him improve so much with early intervention, I was keen to open a centre where we could provide intensive evidence-based early intervention to more children.”
In 2002, Nicole partnered with her son’s speech pathologist to open the Lizard Centre in Sydney. They expanded to Adelaide and Melbourne in 2014 and 2016, respectively.
“It is very reinforcing watching children get the very best support but it didn’t take long to realise we were catering to a small community of resourced families in Sydney and that most children across Australia were not receiving anything like the programs we had at Lizard.”
It was this realisation that drove Nicole to start Autism Awareness Australia.
“I wanted to take all of the very best information, clinicians and practises and somehow deliver that information to families across Australia. I wanted to establish a truly independent source of information going directly to families.”
The goal was to facilitate each parent to help their child reach his or her full potential. Nicole envisaged a trusted community of parents, connected via the World Wide Web. In the time before smartphones, creating this community required face-to-face interaction.
“It started in workshops in venues and university halls across NSW, Victoria and Queensland. We travelled through regional and rural Australia talking to any families who showed up at our events – all run for free.
“Now we have built Australia’s largest online community in autism.”
Autism Spectrum Disorder
In 2013, the American Psychiatric Association published the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) which is used by health practitioners to help diagnose a range of conditions, including autism.
The updated edition had several major changes to the way that autism is diagnosed and classified. These changes were made to provide a more accurate diagnosis and a better understanding of the level of severity of each case.
One of the major changes was combining the previous four individual terms for autism-like disorders under one umbrella term, Autism Spectrum Disorder (ASD). They are:
Childhood Disintegrative Disorder
Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS)
This change meant that for some people, their diagnosis changed, but it wasn’t recommended that children or adults be re-assessed, in the hopes of avoiding confusion for patients and their carers if they identified strongly with their current diagnosis.
There is now a scale of levels which is used to determine where on the spectrum a child or adult is.
“Requiring very substantial support”
“Requiring substantial support”
Severe deficits in verbal and non-verbal social communication skills cause severe impairments in functioning, very limited initiation of social interactions, and minimal response to social overtures from others.
The inflexibility of behaviour, extreme difficulty coping with change, or other restricted/repetitive behaviours markedly interfere with functioning in all spheres. Great distress/difficulty changing focus or action.
Marked deficits in verbal and non-verbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions; and reduced or abnormal responses to social overtures from others.
The inflexibility of behaviour, difficulty coping with change, or other restricted/repetitive behaviours appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress and/or difficulty changing focus or action.
Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful response to social overtures of others. May appear to have decreased interest in social interactions.
The inflexibility of behaviour causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organisation and planning hamper independence.
The Hogan boys, Aden (15), Travis (12) and Elliot (11), were all diagnosed under the DSM-IV.
“We don’t actually know what levels they are,” explains their mother, Karen. “They would be high-functioning.”
The change from naming specific conditions to using one umbrella term has left many parents confused as to their child’s updated diagnosis, but Karen and Jason Hogan aren’t worried by the change. They know how each condition affects their child and they help cater to that.
When they inform people about their children’s diagnoses, they simply say: “They have autism.”
“I’ll tell their teachers, ‘Yes, they have autism. Now forget about it and treat him like any other child. But just know if their world starts to fall apart, know that there is a reason. You might not understand that reason until you really sit down and talk with them, but there is usually a reason and it is normally something you wouldn’t have picked.’”
“Aden is very socially and emotionally awkward,” explains Jason. “He has trouble with social cues. He’s becoming more independent. Like walking to the shops and to school. Along with his autism, he has major anxiety.”
The Hogans’ friends have told them to watch shows like The Good Doctor to gain some insight into their sons’ worlds. “Apparently, [Aden] is just like that, or Sheldon [from The Big Bang Theory],” says Jason.
“He is very smart, science and maths. I know one day he’ll go on to make some scientific discovery,” says Karen. “He loves biology. He could do puzzles upside-down and without a picture. And he’s into Japanese folklore.”
“A comment I got a lot when Aden was first diagnosed was ‘he must be really smart’. People assume he is smart because he has Asperger’s,” explains Jason.
“A lot of kids on the spectrum will have one thing that their world revolves around, so they become really knowledgeable in that. And it tends to be maths, science and physics; because of its structure, and those kids like structure.”
When asked about the differences between their sons’ diagnoses, the Hogans are clear that they have three very different children. Travis, whose academic performance is average, is “very social, but he can’t see how much everyone loves him. He’ll play with anyone, as long as you’re nice to him,” says Karen.
“Then Elliot, our littlest monkey,” reflects Karen. “He has autism, a learning delay, abnormal migraines, absent seizures and epilepsy.”
All of the boys appear to have ADHD. Travis has been diagnosed; Aden and Elliot have traits. They become “stir crazy” if the weather has been too hot or wet and they haven’t had the chance to be outside.
The ‘normal’ debate
The term ‘normal’ is tossed around in the autism community.
‘Don’t you wish they could be normal?’
‘If they could, would you want them to be?’
But what is normal? And why are people, typically people that don’t have children on the spectrum, asking this?
“Ha! What is ‘normal’?” laughs Nicole.
“There is no ‘normal’ and the sooner people understand that, the better their lives will become. Autism is just a unique way of processing information and seeing the world. It is different, not less.”
Nicole acknowledges that for people with severe autism, the diagnosis comes with a high degree of disability “and hence vulnerability that comes with the diagnosis. That is the end of the spectrum I am most intent on lobbying for,” she says.
She believes that advocacy is most important for those who can’t always speak for themselves.
“Jack is Jack. Jack is not autism and autism doesn’t dominate our life. My son is a divine young man, a working chef, supportive brother and the best goddamn companion to watch Game of Thrones with – he remembers every back story! I wouldn’t change one thing about Jack Rogerson. I am in constant awe of him,” she explained.
The media representation of autism, whether it’s in movies or television shows or on the news, reflects only a small portion of the entire spectrum.
Rachel Kay, who has siblings on the spectrum and has traits herself, explains that these representations are true for some people, but not for others and that everyone is different.
“It depends on the person. The series Atypical (Netflix), so many people didn’t like it because of the way it projected autism, but there are some people on the spectrum that are like that.”
Rachel acknowledges that the representation of autism in the media is complex.
“I feel like some of it is a little over the top, but that’s what it’s like for some people [with autism].” Rachel has heard complaints that the portrayal of autism on television is “too much” But “they put suicide in the media and not everyone’s suicide story is the same”. she points out.
Nicole also thinks that there should be a more accurate depictions of autistic people in the media.
“Don’t get me wrong, I am grateful for these representations as they help increase awareness of autism amongst the wider population, but yes, they do tend to only focus on people at the higher end of the autism spectrum.
“I guess it is hard to make a movie/TV show about severe autism in the same way it would be hard to make one about dementia or mental illness. Hard truths and people living with significant challenges are rarely ‘must watch TV’ for people not affected by these issues,” she explained.
Karen and Jason Hogan speak about their three children, who are all on the autism spectrum.