AUTISM IS ON THE RISE, AND Ma CVO Tat Teg Ces ee By Kate Leggemagine starting your first year of school with volcano inside you. ‘The sound of a ticking fan could overwhelm your senses or the heat from another's body might stoke its rumbling. Any number of noises or smells can trigger the meltdown of an autistic child who might explode at home if one food touches another on the dinner plate. They might suddenly throw themselves onto the floor, screaming, hitting and kicking out at anyone who tries co restrain them. They might break a window or hurl a chair uncil an adule removes them, often by foree, to a safe place that may be locked and. windowless until the chaotic eruption subsides. Ifthe teachers are at their wis’ end they might snap, like the one in Qucensland who cold a boy to “heel” and then shouted: “Stop being autistic for five minutes!” More likly, che principal will resore to suspen- sion as the cheapest, quickest fix for a problem disrupting schools around the count Before he turned six, Thomas MeCarthy been suspended five times from his prep class (the first year of formal schooling) in a Queensland primary school. The fifth landed him home for 10 days. IFhed been away for 11 days, his exas perated mother Mina could have appealed, Instead she poured out her despair ina eter to a Senate Jnguiry that heard from fails of children with disabilities chronicling mostly grim tales of their had ‘experience in mainstream school settings. She suspects dramatic leap inthe state’ prep suspen sions, from 379 in 2010 co 873 in 2014, confirms the failure to accommodate kids like Thoms. Diagnosed lace because of long waiting lists for specialists in regional centres, her son missed out om crucial early interventions. Mina’ passionate cry for smaller clases, beter professional exper- tise in managing autism, more support staff and ing recovery areas fr these children capuures in a nutshell what a tcam of Canberra expers took hundreds of pages to recommend after the dliscovery last year of a “cage” built co restrain an autistic child at an ACT primary school Mina, an eatly childhood teacher with expe- rience in special education who gave up work to advocate for her son, understands both sides of the conundrum. “understand ths behavioue s disruptive and potentially dangerous to staff but there should be strategies in place to identify triggers before they become meltdowns,” she pleads. “I pushed through term one, term two, term thre, then T thought, where ese can we .g0?” One day she walked in to find senior staff “kneeling” on her son as his voleano blew. “He ‘was thrashing around, pushing things off che table. He hadn' de-escalated so the acting prin cipal was holding him down.” Thomas destroyed the ent in the classroom that was meant for his safe withdrawal because others kept using it [After his sixth suspension last October, Mina didnic return him to the school and has sinee found a new one. This year she’ praying for miracles. Suspension, and restraint in schools stretched by increasing numbers of students With problem behaviours are under scrutiny. Autism now affects one in 100 children, At this rate every third classroom in the country is likey to inchudea student with Autism Spectrum Disorder, for ASD. Many teachers supervise classes with three or four in the mis, in addition to students who have other issues affecting their behaviour and ability co lear. Victorias Mooroolbark East Primary counts 80 children with autism among its 600 students The principal of a Queensland school where 100 in the population of 500 have disabilities ~ half with a diagnosis of autism describes the deep end of “kids hitting, bit ‘wecing on people, screaming, throwing ca tums, asaultng staff and students, hanging off balconies, swinging a broken broom handle” Photographs of the Canberra “cage” built from pool fencing to rein in an autistic child went global on social media last April Disman- tled almost immediately as protests raged, there have since been fresh revelations of windowless rooms and storage spaces operating as “time- out” citcut-breakers. Parents and teachers are at a tipping point. When parents at a Hervey Bay primary school leaked pictures of the darkened room where an autistic child was locked during a meltdown, the Queensland Education Depart ‘ment issued an edict requiring principals to sek. parental approval for time-out places. Such extreme measures point to profound challenges in schools where staffdo not have the training, resources or time to manage the kind of personalised learning and supervision these behaviours demand. Veteran disability expert Professor Tony Shaddock concedes the shift of kids with complex behaviours into mainstream schools suffers from flaws similar to those that dogged the 1980s closure of institutions for the mentally il. “People take a good idea and wreck itby oversimplifying,”he says. “Initially the idea of a teacher’ aide t0 look after these children was OK, but with lots and lots of kids with a range of disabilities we need ro doit differently. ‘What we did 25 years ago doesnt cu it today.” Jack Baulch is bent over a robot computer game as he answers me, his fae averted. In one hhand he holds a ball of putty that he squeezes and elongates with nervous fingers. Te takes my mind off things,” he says, wrapping the elastic pulp around a big toe. His diagnosis of high fanetioning autism has been managed with specialise therapies and an aide throughout his pri mary school years. Good-looking and finely wrought, his face ispinched by a shadow of intensity because social interaction is dificult for children on the spec trum, When I ask him whether he likes school, he doesnt shy from his demons. “I find ie hard to behave. Sometimes I go a bit silly. I start going eray. Fm noe sure why. In the comfort and familiarity of home he seems relaxed, but when he returned co school aficr our visit he became upset, upending chile ddrens drink cans then snatching a boys glasses and putting them in a drain, “Just another day dealing with unpredictable behaviour.” says his smother Katrina, who fears for her 12-year-old as he transitions to high-school without the support ofa government-funded aide. Although 2 speech pathologist has diagnosed severe lan guage difficulties that put him at risk academi ly he falls a straws breadth above the cutoff line that determines eligibility Katrina rolls her eyes atthe rules governing assistance in Victoria. In a lever to education ‘minister James Merlino she describes a recent fairly typical week for Jack at school: “He put another students hat down the wiles; wrote inappropriate words on the classroom white board; squashed sandwiches in the toaster co eat relted cheese; called. out random words at assembly; lay on the classroom floor screaming and yelling for 20 minutes because he didnt get his way; sprayed children's arework with food dye.” She wrote begging for help as Jack steps up to high school with 15 other autistic children ‘ho have also missed out on funding under the states Programs for Students with Disabilities. Funding and services vary from state to state Some mainstream schools have special education units and there are standalone special schools But under inclusion policies thar dictate that a child should attend a general schoo! wherever possible, some 86 per cent of students with a dis- ability now attend mainstream schools. Schools often shuffle budgets to subsidise aides while parents at private schools can fund their own Jeaming support in classrooms where teachers manage medication, cileting and a complex array of syndromes and disorders requiring per- sonalised attention. One parent with two boys with autism and ADHD says thae at least six children in her son's class of 30 requite additional attention. “Because the teacher has limited sup- port not only do the children with additional needs miss out, so does the rest ofthe cas.” Dark-haire, small and feisty, Katrina Baulch isone of many on the frontline who understand the problems difficult children pose for the rest cally and so of the class and che staff who are ‘mostly not trained to deal with the meledowns. taught a lass at Jack’ primary school where an autistic child who is often violent had been confined Last December she toa space berween two classrooms, spending most days on 2 com: Mindful thae this child loves cats, she tried to pre= pare an activity for him around this theme. “The moment I turned iy back he screwed up the paper and threw it away. If Td pushed him he would have bolted. Later he trashed the room. I didre wane to send him home because I know his mother is at breaking point.” Mothers everywhere are on the ‘march. In submissions tothe Senate inquiry they speak poignanty ofthe harrowing road they tread dhily. “Our familys world is small and lonely,” says one. “Most days I'm in tears, wondering at what point exactly do you give your kids up to foster care” asksa single mother home-schooling 2 son she says was “suicidal” at six through the discress of trying to navigate school. Others detail episodes of young school-age children holding scissors to their head or threatening injury: ‘Vanessa Comiskey removed her high func- tioning autistic son from a school in regional NSW when he began sel-harming, searching his corso until it bled. "I was desperate. I would plant myselfin the school frone office ro be seen because staff were not returning my cals.” At her wits end, she took him out of his third school, where he had no special support. Now enrolled in distance education he has thrived, and is set on a career path into ar foree cadets ‘Good news is thin on the ground. “My son hhas never been t0 school fulltime,” says a ‘mother of an I l-year-old with severe autism and anxiety. Another explains she is homeschooling a son with autism, anxiery and obsessive-com- pulsive behaviour because his language skills disqualify him from a special school while his dlsabilties make a mainstream seting impossi- ble. “Unless you have walked the path you can- not comprehend what itis ike,” writes Samantha Powell of a son who receives minimal suppore through a social skills program but no educa tional aide. “To see your child banging thie hhead against a wall while crying hysterically yee tunable to ell you what led to his meltdown, Nobody should have to live through this.” pater game, cor Parers describe “a Lord ofthe Fliesschoolyaed dynamic” where kids are lef sitting under desks, kept in corridors, locked into courtyards during lunchtime so they will not harm other children, be bled orescape onto the road. “My 14-year- cold daughter struggles every day to ‘fc in? and. not be punished.” Suspended many times for hher meltdowns, the school’ solution was to isolate het. “I have hopes and di ‘which are posible if someone just cared.” “Help us,” pleads Robyn Campbell, che mother of two boys with autism. “We struggle every day with children who have no control of . their behaviour, thoughts and feelings. The thing about having a special needs child is that youite always fighting. You're always exhausted and most ofthe time you'te just trying to cope.” ‘Another recounts her son’s ist year of school being punctuated with meltdowns, suspensions ins for herand escapes until the school reduced his attend- ance 0 two hours a day. Just getting him out of the car was fraught. One morning, after tears and physical resistance, she Finally shoe-horned him into school where the deputy principal cold her he was too upset for class “I unlocked my car and we got in and went home.” She with- drew him to start again somewhere els. These are the frustrations that encourage parents to skew diagnoses to procure funding for a teacher’ aide, because without additional one-on-one help their offipring wither. They mortgage homes, sll furniure, anything to pay for therapies not funded by the public purse Many mothers abandon work 0 remain on standby when schools summon them because of disruptive behaviour. Success isa lottery that depends on a mix of early diagnosis, robust intervention therapies, a tailored learning plan to modify curriculums, teachers with patience and imagination and principals committed to the noble deal oF inclusion. "The percentage of students with disabilities im primary schools doubled berween 1995 and 2006 as anti-diserimination policies funnelled kids into a mainstream setting, The Productivity mission calculated that 183,610 children wich disabilities received funding in 2012, yet that same year figures released by the Australian Bureau of Statistics reported 295,000 children aged fiom five to 17 with disabilities were attending schools. Trials of the Nationally Consistent Collection of Data on School Students with Disability returned ‘even higher estimates of 598,824 in 2014. When the autism cohort is extracted from ABS disability surveys the data reveals a 79 per ‘ent increase since 2009 in the number of Australians wich this condition, which tags roughly four boys for very git! with the highest prevalence among, younger age groups. The reason for this increase is not clear, but would seem co be a combina- tion of more cases and more diagnoses for a condition characterised by problems with social interactions, communication and behaviour. Disabilicy has ballooned beyond physical or intellectual impairment into an aray of psycho- logical conditions. One mother who qualified asa teacher in 2001 says she took a single semes- ter course on children with special needs that focused mainly on visual and hearing impair- ments, “I can honestly say Twas ill-prepared to teach children with special needs,” she admis Teacher's aides were introduced in 1992 initially to provide clerical support. Their role has changed but training and qualifications remain poor, An Australian Education Union survey of staff in 2013 found the vast majority in primary and secondary felt they were lacking the wherewithal o teach students with disabi ties. A Queensland principal, who wishes to remain anonymous, says he is desperate 0 employ staff with special education qualifica- tions. If he cant find candidates he trains them himself because he believes in catering for this demanding cohort. “Children with autism can't cope with changes in routines; they can filter noise or other sensory triggers that cause them to melt down. They need higher adult ratios, structured regimens and small, safe environ- iments which are sometimes incompatible with His, prima has seven autistic children who will star second- ary level chs year without the funding that sup- ported them through childhood. “None of them ‘an function on their own in the mainstream Yet for every complaint of burnout, stress and breakdown among teaching staff there ate points of light, places of compassion. Debbie Nelsson, a Victorian principal with almost four decades of teaching experience, isanother strong leader committed t0 ensuring the neediest of her brood at Mooroolbark East Primary are sup ported, even though only 36 of the 80 students with an autism diagnosis qualify for govern ‘ment help. “Iisa ticking time bomb,” she sys. “When I started there were not as many kids with dificul issues in che system. Quite alot oF the special schools have closed because main- stream is seen as the best option but the most vulnerable families are not getting the suppor: Like other principals and parents, Nelson is flummoxed by the number of kids who lose ther funding a the end of Year 6 on the cusp of the challenging switch «0 secondary school “These kids hate change of chat magnitude ‘We've got kids who have improved out of sight during their primary years but they'll get noth- ing chs year as they start secondary school.” NNelsson argues that funding in primary set- tings should continue chrough the first year ol high school and then be reviewed. Listening t her describe carefully thought through strategie: for managing meltdowns would be music tothe cars of any parent parched of hope. The schoo hhasa“sensory” room for children to recover fom explosions in the company ofan adult. No locks no blacked-out windows, just a beanbag anc quiet music to calm them, “We have a specia card that says ‘Tm going to lose it’ which they can show to a teacher,” she explains She found funding for two adults to take child with autism away on school camp. Thi seems such a meagre gesture until I hear fron the parents ofa boy who was refused permissiot fora school trip to Canberra on the grounds © insufficient support staff. His terible disap pointment “led to a meltdown and subsequen Suspension” which took his parents t0 th Human Rights Commission in a case that wa mainstream classrooms. y schooldropped afier mediation sessions involving lawyers, teachers and hours of argument. Disability advocate services are mushrooming as parents enlist professional help 10 resolve disputes and negotiate assistance. Bemadette Beasley taught at a private school in Brisbane before the experience of securing e support for her child with autism encouraged her to represent others. Melbourne-based advo- cate Julie Phillips is another “hard-arsed” warrior holding schools responsible for restrictive prac tices that punish children with autism. “Teach es are supposed to devise positive behaviour plans but they have scarce time, resources oF the Skills fr this so they rely on restraints and secu sion. We have six-and seven-year-old being sus- pended or expelled. This eyele is going to worsen tuntil something rally ba A. support group of parents with autistic children contacts me about a “lock-up” room at a school in regional Victoria that was constructed late last year forthe purpose of managing melt- downs. One ofthe mothers describes a space the size of a disabled coilet. She says matting was laid on the floor ater parents complained. “The space is used almost daly because other prevents tive measures to support these children have not been putin plac.’The principals response was to simply say, "Were nox special ed eained Stephanie Godib, CEO of Children With Disability Australia, is receiving more reports of “There is a much higher prevalence of complex ki those with autism, who havent benefited from adequate early intervention. These last-resort ‘measures underscore the brutal fact we are not meeting these children’s needs. Profesor Shaddock, who led the review ieto Canberra schools after the “cage” controversy, recommends careful monitoring of "withdrawal spaces’ to meet human rights obligations. “What realy struck me was the high proportion of stu- dents in schools with very, very high levels of scres often accompanying a diagnosis of autism, These children find social relationships and new uations extremely difficult so a school setting sa recipe for inappropriate behaviour.” Decades of experience in ths field did not prepare him for the “sheer complexity” of nutting outa solu- sion to ensure schools serve “ll” children, He Aiscouragescherry-picking demands for vecher’s aides, training and funding in favour of reimag- ining how schools operat. “Everything in life is becoming more personalised, from laptops to mobile devices, so why not classrooms?” happens,” she wars. restraints and seclusion, Seven-year-old Jack Timms is glued to hi computer screen but at his mother Pauline’ behest he turns his head towards me with the deliberation of a child who has been taught to make the eye contact autistic children recoil from. Enrolled at a private Melbourne school, hie has benefited from parents who can afford to pay $100,000 a year in fees plus therapies plusa full-time aide to ensure he learns according to his needs. Told initially by the choos principal “we dont think this isthe right school for Jack”, they persevered. “And boy results. Bue for every couple like us there are 50 have we seen ‘who donit have the backing we have, IFT was a single mother on alow income suspect I would end up like others I know of, home-schooling ‘when thir child is expelled for violent behaviour” Even with all the resources and support they can furnish there have been problems tailoring classroom rules to dampen his anxiety. Jack hates standing in line, refering to be in front because of his need to be in control. Pauline explained chis quirk to his teacher. “But they kept trying to make him stand in line. Things kept escalating, Jack started scratching children in the line until one day he exploded and smashed two windows before running away. He ‘wasolf choo for three weeks and then restricted to attend She recalls Jack tearfully pleading with her ‘one day: “Mummy, can you give me medicine to ‘make my volcano go away so Ican go to school like the othe kids and noc hurt my fiends.” She now circulatesa letter to parents her son's classes explaining his behaviour. “In my time as Jack’ ‘mum I've been abused on the street. People have told me, ‘Shut your child up’ of, “He just needs a good hiding’. My doors at home are fll of stabbing marks and scars from Jack’ meltdowns bur these ae reducing in frequency and severity because ofthe kills I've acquired along the way.” Nicole Rogerson, the force behittd Autism Awareness Australia, beams proudly when she reveals her autistic son has completed school and now works in hospitality, paying his taxes. “Ies not good saying we want these kids in mainstream schools if we dont plan for it and wwe dont fund it. We send teachers to one day of training and then say, ‘les done’. We expel kids for whack them in a room. What message docs that send theres ofthe class? We have to have a serious national conversation. We cant throw these kids atthe front gate and say, ‘Sot it out ‘We need to work together as a community” ‘Amid the frustration and discouragement there are currents of hope and pride in children ‘who forall their demons ae capable of leaning. [As the new school year approaches, parents of children with autism will have been preparing for months. “I stare agitating in third tem for a handover 10 the new teach caplains. “et sta know about small ehings that ‘would make a huge difference ro my son. [am a constant visible presence. I anticipate siuations and triggers to prevent him becoming anxious. coach the educators. I supply basi ads, such as sensory cushions, peneil grip, fiddle roy. I ead beeween the lines of offthe-cuff comments and sideways looks to find out who is bullying. Even if we are lucky enough to get a competent teacher and aide I can just le them gee on with the job as Lam the only link to my son's future.” Parents of children with autism are always on edge, wary of sensory triggers, heeding signs of trouble. This vigilance is strengthening into thorny activism as they lobby governments, politicians, principals and teachers to help them ‘manage the voleanic roar in their midst. Walk in these shoes for the houe i takes to cajole an anxious, disturbed child out of the car oranswer the call an hour later to collect them from school and who wouldrit be shouting fora beter way? @ for two hours two days a week