With one in 100 Australians diagnosed as ‘on the spectrum’, autism may well be the disorder that defines this generation

Please note: in 2012, 1 in 62 Australian children were diagnosed with Autistic Disorder or Asperger's Disorder; they were formally registered to receive Carer's Allowance from Centrelink (see http://a4.org.au/a4/node/695 and http://a4.org.au/a4/node/622).

Lucie Van Den Berg Weekend Herald Sun, March 29, 2014

Zoe and PJ Harris have both been diagnosed with autism. Source: News Corp Australia

THERE’S no point in filling in the pockmarked walls of the Beasy family’s Sunbury home. Madison could have another meltdown. And that plaster becomes play dough beneath the 14-year-old’s powerful fist. She’ll need to be driven to school again today after more troubling behaviour on the bus. In Belgrave South, another mother is getting her children ready for school. Her son PJ is 12, but still much like a toddler. His big sister Zoe is a gifted photographer with an air of maturity that stretches well beyond her 14 years.


But right now Zoe is preparing psychologically for another day at high school where she will struggle to make conversation with her peers. In Mickleham, three brothers are also packing their school bags. It’s a task Michael, Marco and Daniel were trained to do over many, many hours. They use picture cards that deconstruct this simple job into tiny visual steps for them to follow. A pencil case card. A water bottle card. And finally, a card showing them how to put their packs on their backs. On this routine school run that happens every weekday across Melbourne, these six children appear vastly different. Yet they all they all have one thing in common: each is “on the spectrum”. Autism Spectrum Disorder (ASD) is a broad umbrella under which an increasing number of people shelter. One in 100 Australians is affected. Autism Spectrum Australia describes the disorder as a lifelong neurodevelopmental disability that affects the way a person interacts with their environment and other people. It includes a range of conditions such as autism, Asperger syndrome and pervasive developmental disorder. More children than ever before are being diagnosed with autism.

More children than ever before are being diagnosed with autism. Source: ThinkStock

Beryl Raufer, the interim CEO of the disorder’s peak body Amaze, says every individual with ASD will be affected differently. She says one of the biggest misconceptions is that autism is just like Rain Man, the movie depicting Dustin Hoffman’s as a “mega-savant” with a superior memory and intellectual disabilities. But in reality there’s a huge variety — “spectrum” — of characteristics and abilities. And the similarities and differences in people with ASD is never more stark than when siblings are diagnosed. Take the Harris family. It’s Thursday afternoon and mum Liz is standing in the driveway waiting for her son to arrive. At 3.45pm a lanky 12-year-old boy emerges from the school bus. As he walks towards his mother he doesn’t say hello or even look up. Liz gently tilts his chin up, making it more difficult to avoid eye contact, but even now those brown eyes dart. His mother reminds him that it’s time to collect his big sister Zoe in the car. “Zoe, Zoe, Zoe, Zoe,” he repeats the word until it is no longer about his sister. It’s just a sound. This is echolalia, a common occurrence in children with autism. Later, when Zoe strolls out of the building to meet them, PJ is sitting in the back seat of the car sucking on the end of an old chocolate wrapper. “Hi, how are you?” the 14-year-old asks her mother, with precise eye contact and a smile. Zoe also has autism. While both Liz’s children are on the spectrum their abilities and behaviours are worlds apart. Liz says she often feels stuck in a time warp with her son, who is still heavily reliant on her. Communicating with him can be like the guessing game parents must play with a crying baby. Zoe also has difficulty communicating, but not like PJ. She has Asperger syndrome, which is also under the ASD umbrella.

The Harris Family — siblings Zoe and PJ both have autism. Source: News Corp Australia

Her gift is a passion for photography and by the time Zoe was PJ’s age she had put on her own photographic exhibition. Her ability to hyper-focus enables her to concentrate intensely behind her camera lens for a long time. The images that result express intense emotions that Zoe struggles to articulate, especially with her peers. It’s so much more than shyness. “I find it hard knowing what’s going on around me,” she explains. “Especially at school when there are large groups of people talking.” More children than ever before are being diagnosed with autism and boys are more likely to be affected. Some speculate the increased prevalence may be due to the survival rate of premature babies, increased paternal age or anti-depressant exposure. But Murdoch Children’s Research autism expert, paediatrician Professor Katrina Williams, says it’s more likely that it is not a “true increase” in cases, but a greater awareness and broadened diagnostic criteria. A diagnosis can only be made after assessments by a paediatrician, psychologist and speech pathologist. Prof Williams says there is still a diagnostic grey zone that can lead to both over and under-diagnosis. “While it’s simple for paediatricians to identify children at the extreme ends of the spectrum, there is still this ambiguity for children who don’t fit exactly into the criteria,” she says. Not enough is known about what constitutes “normal or near-normal” across different ages, genders and cultures. Even though genetic and environmental links to autism are emerging, there is no known single cause. Speculation is not helpful and may even be harmful. For instance some people claim vaccines, mercury, gut flora and cerebral inflammation cause autism. This has led parents to withhold vaccinations and give their children chelation therapy, which involves chemical infusions to treat heavy metal toxicity. Prof Williams’ research shows that so far no complementary or alternative therapies are proven to improve ASD. There are some medications that lessen anxiety, attention deficit hyperactivity, poor sleep and aggressive and disruptive behaviours, but these can have side effects, such as weight gain and drowsiness.

Classrooms are not always equipped to cater for kids with autism. Source: ThinkStock

Parents describe the grief they go through when their child is diagnosed. It says so much about what their life may no longer be like, but gives very little certainty about how it will actually be. Liz remembers her husband Phil lamenting the loss of the son he thought he would kick the football with, even though he knows his son, was just as likely to prefer karate. “You are grieving the rites of passage that you may miss out on as a parent,” Liz says. Classrooms are not always equipped to cater for children with ASD. Parents report many teachers still simply see their children as naughty. In Victoria, there have even been disturbing accounts of students forced to sit on a chair or under the principal’s desk for hours, physical restraints or the use of fenced-off enclosures. Ms Raufer says children with ASD find it difficult to concentrate in a busy environment. “One mum said it took her son 19 minutes to eat a banana because every time he went to have a bite, someone distracted him.” Most teachers though are doing their best with what they can and some even detect ASD because behaviours overlooked by their parents as idiosyncratic stand out in the classroom. A Victorian early childhood teacher, who spoke to the Herald Sun anonymously, said a child on the spectrum would often hate having someone sitting close to them on the mat, they rocked and wiggled constantly or poked their tongue in and out. Raising the possibility there is a problem with parents can be tricky. She recalls just one family who refused to engage on the matter, at all. The hardest, but eventually the most helpful aspect of managing a child with autism in the classroom, was encouraging the parents to share the diagnosis with their classmates. This helps reduce bullying and social isolation. The Victorian parents who spoke to Weekend say having a child on the spectrum has put their lives on a different trajectory, but it is not a tragedy. They have so many unanswered questions about causes, treatments and long term outcomes. But they certainly aren’t after a cure for autism. It’s part of who their child is. This is an edited version of a longer story which is published in Weekend today. To read the full story get the Weekend lift-out in today’s [29/3/2014] Herald Sun.

The Beasy Family — Madison has autism. Source: News Corp Australia


WHEN Madison Beasy gets frustrated she bangs her hand against her head. Always the right hand, always the right side of her head. The sound it lets it be known it’s not a light tap. It’s also not an uncommon occurrence. “She can fly off the handle 2-3 times a day, if not more,” her mother Teresa says. At age four Madison was diagnosed with pervasive development disorder, which comes under the ASD umbrella. She was a placid, independent baby who fell behind her peers. Teresa says her 14-year-old daughter can speak, but she can’t have a conversation. For example, Madison has learnt how to say, ‘‘How was your day?’’ But then she doesn’t know how to continue the conversation. This frustrates her, making her more likely to lash out. And her anger management issues have made her more likely to be left out because some children are frightened of her. “She’s like Jekyll and Hyde, one minute she is fine, the other she can just switch and fly off the handle,” Teresa says. Lately life has become even more complicated for Teresa, her husband Garth and children Keeley, 16, and Kayne, 7. Teresa has been told that Madison may no longer be allowed to travel on the school bus because she has been banging on the windows and grabbing at the other children. They don’t know what sets her off, making it hard to know how to stop it. Unless Teresa can control her, she may have to travel 100km a day to ferry her from their Sunbury home to Madison’s Jacana school. But Madison has recently started new medication, which is beginning to have an effect. It offers so much promise in reducing her anger outbursts that recently her parents even began filling the holes in their walls left by her punches. As Madison gets older and bigger she is harder to control, making it difficult to go out as a family. She also seems to be becoming more aware of her differences. She sees her older sister get a part-time job and go out with friends. Madison wants that too, she has told her mother. Teresa hopes that through better community understanding her daughter will one day get that chance.

The Harris siblings, Zoe and PJ, both have autism. Source: News Corp Australia


WHEN Liz Harris found out both her children had autism spectrum disorder she did the worst and most natural thing possible. She Googled. “It was just devastating because you are flooded with all this information about treatment and everything your child can’t do, all the things that could happen and that they may be in nappies for the rest of their life,” she says. In the beginning, Liz and her husband Phil tried as many therapies as possible, including diets that restrict gluten and dairy. She became a machine; trying to control the uncontrollable. “But then you just collapse in a heap and realise that this is life, you’ve got to keep living it,” she says. Both her children have different abilities and needs. Her son PJ, 12, attends a special developmental school. Her daughter, Zoe, 14, goes to a mainstream high school. Zoe is a bright student who taught herself to read before she started school. She is also passionate about taking photographs, but she struggles to interact socially, which lowers her self-esteem. Lately she has become intensely interested in self-help slogans. She has made a box full of positive affirmations that she found on the internet. One reads, “I will allow myself to shine.” Another reassures her that “I’m successful in whatever I do.” She uses them to try to calm her and control her bad moods. Zoe knows she has a few differences, which is hard at high school when everyone just wants to be the same. Her biggest focus, like most girls her age, is on making friends and fitting in. But she says she doesn’t tell people she has autism because she “doesn’t want sympathy”. PJ was diagnosed at the same time as Zoe. He has difficulty communicating and requires a lot more support, but Liz says he is very social at his own level. “He’s a very happy kid, but there are just certain things he will not do.” Liz says having children with autism is far from a tragedy. She loves their strengths and tries to assist them with their weaknesses. But ultimately, she says, “They are still your child, someone you are supposed to have fun with and love and not just treat as if they are something to correct. “Autism is not a sickness that you need to fix, it’s part of who you are, like saying you have brown skin or blue eyes.”

The De Nittis boys all have autism. Source: News Corp Australia


ADDIE De Nittis’ suspicions that her son Michael, now seven, had autism spectrum disorder were aroused before his first birthday. When Michael was just six months old he would stare solemnly out the window. She began to notice he wasn’t socialising with other children, he had poor eye contact and a bad temper, and he would flap his arms. She had been around people with autism during her time as a carer and knew these were all signs. Addie recalls mentioning it to a maternal health nurse, who dismissed her as another anxious parent. Then, at 14 months, Michael lost his speech. This strange regression at a time when he should be progressing was the final sign she needed to act. It took six months to get an appointment and another five months for the specialist assessments. The psychologist put Michael on the spectrum at moderate to severe and the speech pathologist and paediatrician labelled him moderate. “I was absolutely gutted,” Addie says. “I knew exactly what the outcome would be, but to have that piece of paper, you go from your child being a child, to them being a child with autism, was really hard.” It took a year of speech therapy for Michael to speak again. Addie and her husband John were so busy helping him that they barely noticed the signs in their second son Marco, now six. His speech was a little delayed, but it improved when he was given grommets. Then it became clear at kindergarten that he had the same social difficulties, but he also had sensory sensitivities. Marco had no idea how to play with his peers, he didn’t join in at mat time and he couldn’t tolerate any singing. Happy birthday would send him over the edge. “He would have a meltdown, kicking and screaming under the table, he just couldn’t handle it,” Addie says. The meltdowns were different to temper tantrums. “They became more aggressive and violent, kicking, slamming doors and screaming for hours.” The news was almost inevitable: Marco was also on the spectrum. Then came Daniel, their third son who knew no fear. He would climb on top of the kitchen bench and throw himself off. At two, Daniel, now three, was also on the spectrum. Addie says she tries hard to make her children’s lives easier. The boys all undergo applied behavioural analysis therapy several times a week, which teaches them life skills like getting dressed and packing. And all three boys now attend their local primary school; a feat that she feared may never be possible. “There were many times where I was wondering why me, and why I was being put in this situation and why I had been chosen to carry such massive responsibility of raising these beautiful boys,” Addie says. “I couldn’t see the answer for a long, long time but today I know the answer, because I could and because I can.” from http://www.heraldsun.com.au/news/victoria/with-one-in-100-australians-di...