Issue link: https://maltatoday.uberflip.com/i/501315
maltatoday, SUNDAY, 26 APRIL 2015 News 13 Understanding autism: a family tells its story MARTINA BORG IN the 1988 Oscar winning film Rain Man, 'autistic' Dustin Hoffman per- forms complicated mental feats of mathematics in microseconds, and reels out without hesitation the dates and number of deaths in particular airlines' air accidents. Qantas never had one, he also tells his 'brother', Tom Cruise. Which would seem to confirm the impression some have that autism is a condition that gives those affected a mental edge. They see autistic chil- dren as wonderfully gifted. It is not so, as Rain Man actually goes on to show. Those doubting the situation should ask the parents of such children. They should, for instance, talk to parents Julian and Emma McEwen, of Naxx- ar, who would explain that the reality is truly very different. "Our perception of autism, before our son was diagnosed, was basic. I suppose it was the usual Hollywood portrayals and occasional savant sto- ries. I remember a friend, on hearing that our son had autism, saying 'wow, that's awesome' and almost chiding us for not wholeheartedly agreeing!" Julian said. "I can't blame him, mainstream sto- ries tend to be ultra positive, portray- ing characters with autism or autistic traits as 'genius but socially awkward'. They rarely focus on facts such as that only 15% of adults with autism in the UK are in full time employment, or that 40% of UK children with autism suffer bullying at school," he added. The McEwens' six-year-old son, Finn, was diagnosed with autism around the age of three and a half after a long process of examinations. They explained that a gradual number of events had built up to a consciousness of something being different. "It starts in the same sea of normal, every day, parental worry and para- noia that something is 'wrong' with your child," they said, adding that the fact that parents are fighting against natural parental tendencies to think the worst, made the ultimate realisa- tion more difficult. "Parents are always checking them- selves against other parents who are, naturally, in the same boat. You all tell each other that everything is ok, it's nothing, all kids develop at dif- ferent rates and it's nothing to worry about," Julian explained. He added that it was when they didn't get the confirmation that eve- rything was fine; the first words, steps, eye contact, that the normal worry started to take on a different shape. "It was just before the age of two and Finn's speech wasn't developing. Our paediatrician had recommended we start investigating, just to be safe, and it was also around this time we noticed some of his mannerisms were particularly unique to him," they said. "Strangely, it wasn't until we saw another child in a busy crowd make exactly the same hand gestures, ones that we had never seen any other child in his group make, that things began to feel minutely but consciously dif- ferent." The McEwens then took their son to the child development assessment unit (CDAU), and had him seen by every child specialist in the vicinity over the course of two years. "We visited, they wrote reports, they met, we met with all of them and drew up a comprehensive picture of what was going on," Julian said, add- ing that these people had been fan- tastic and that the support they had received had been exceptional. "Gradually, you start talking, dis- cussing, researching, learning about different developmental conditions with one beginning to stand out, go- ing from possibility to certainty, until the final psychologist report delivers it in harsh black and white. Autism." Inspire Foundation's autism expert Doreen Mercieca pointed out that au- tism affected every one in 68 people in the US and one in 100 people in the UK, but that such figures did not ex- ist for Malta as no such research had been carried out on a local level. Asked about the challenges that the condition had posed, Julian said that in truth, just like other families, parenting was the biggest change in their lives, and that autism had been an added dimension to the experi- ence. "Emma's life is devoted to balanc- ing therapy and education and giv- ing Finn a normal boyhood, which is more than a full time job," Julian said, referring to his wife's dedication to Finn's development. He added that ensuring Finn was given the right level of support, in the home and outside, was one of the big- gest challenges the family has had to face. "We've got to challenge him and make sure we are not making 'autism excuses' for him but at the same time allowing for his condition. We've got to advocate for him, make sure he's getting the right support at school," he said, adding that the staff at his son's school, San Anton, had been wonderful in offering their son the necessary support. Julian added that it wasn't just their son they had to tend to, following the diagnosis, but that they also had to deal with their own mental states and the strain the situation could have on their relationship. "We've learnt to talk openly a lot – it's by far the best single thing you can do for yourself and your relationship," they said. Julian said that early intervention and therapy had been critical for the family. "Self-education is also important but, like any condition, being care- ful not to fall for the many snake oil cures out there – they are so tempting when you are desperate – has been essential. "I can't imagine coping without our amazing friends and family. There are parents, especially single parents, who don't have as much support, even with our parents living abroad, as we do – I admire them," he added. Mercieca confirmed this viewpoint and said that people should exert cau- tion in trying different therapies. "Some autism treatments are just money-making scams. During my years working in this field, I have come across parents who have spent literally tens of thousands of euros on a treatment/therapy – searching for a cure – which is based on absolutely no scientific research and needless to say, no positive results were seen." The McEwens also stressed the importance of Inspire's specialised autism programme for Finn's devel- opment, which he has been attending for the past few years. "Thanks to the programme I've seen Finn come in leaps and bounds. He's happy and he is progressing very well," they said, adding that the pro- gramme is heavily subsidised through fundraising efforts that Inspire em- barks upon. "If this wasn't the case it would cost an arm and a leg and would be an additional weight on our shoulders." Julian added that the team at Inspire had worked tirelessly to help children like Finn and their families. "Unfortunately we've got used to hearing about a shortage of resources or Inspire not being able to fund cer- tain programmes. They fundraise like crazy but it's not enough. "Institutes like Inspire make a mas- sive difference to the lives of people with autism but they need more rec- ognition, a higher profile and more financial support," he added. Autism explained Doreen Mercieca explained that autism is a lifelong developmental disability that is often described as an autism spectrum disorder (ASD). "Autism appears in early childhood and is usually diagnosed by the age of three. As indicated in the term 'spectrum', the level of severity of this condition may vary in three different areas, namely: social communication, interaction and imagination," Mer- cieca said. "People with autism may have dif- ficulty in understanding both verbal and non-verbal communication, un- derstanding other people's emotions and also in changing routines, among others," she added. Mercieca pointed out that despite the endless volumes of research on the subject, no exact cause of autism has yet been established. "In view of the complexity of the disorder and the varying degrees of severity, there is probably more than one cause. However, both ge- netics and the environment (such as air pollutants, viral infections and complications during pregnancy) are areas which are currently being re- searched." Mercieca said that one of the big- gest controversies was whether the MMR vaccine could cause autism, but extensive research around the claim has been carried out and ulti- mately, no reliable study has found a link between autism and the MMR vaccine. Mercieca also explained that since the publication of the Diagnostic and Statistical Manual in May 2014, the umbrella term "Autism Spectrum Disorder" is used to refer to various disorders like Autistic Disorder and Asperger's Disorder, among many others. She further explained that the term Asperger Syndrome, which is arguably one of the most well- known forms of autism, has also been changed to high functioning autism. Inspire Foundation's programme Inspire's education programmes provide services to individuals with various learning disabilities, includ- ing autism. The support is either free or heavily subsidised, and is offered at the Inspire Education Centre. It also reaches out to the mainstream schools and the family environment, in order to achieve full inclusion in the society. The focus is the client's potential and its further development. The Structured Training and Edu- cation Programme (STEP) is a spe- cialised programme for children and adolescents within the Autistic Spec- trum. It aims to provide assistance and support to ensure full inclusion at school and within the community. STEP is offered through a team made up of tutors who are supported by the speech and language pathologists and the programmes' psychologist. Parents are considered to be key members of the team and work alongside tutors and the other pro- fessionals. Their commitment and cooperation are considered to play a major part in the child's progress. Parents are an integral part of their child's assessment and teaching, constantly providing information about their child's needs, behaviour, interests and dislikes, and also voic- ing their own concerns and priorities for their child. Specialised Training for Lifestyle Enhancement (STYLE) on the other hand focuses on youngsters enrolled in the Autistic Spectrum Disorder programmes. Whilst bearing in mind that the condition of autism lies within a spectrum, meaning that each client has to be treated as an individual, participants are encour- aged to engage in activities favoured by typically developing peers. Nev- ertheless, the underlying objective is to help the client become more func- tional, thereby enhancing his or her quality of life. One of the strengths of this programme is that it allows members of the Inspire team to mon- itor students' performance at school as well as to conduct peer preparation programmes in order to educate stu- dents' classmates about autism. mborg@mediatoday.com.mt COURT NOTICE The Registrar of Civil Courts and Tribunals informs that theCivil Court, First Hall ordered the following sales by auction: Date and time Place Items 6 th May, 2015 9.30am - 12/15 PP Capital Business Centre, Ta' !wejt, San "wann Vehicle Alfa 159 Stationwagon, black in colour, with registration number ABR098 6 th May, 2015 11.00am – 5/15 JGL 33, Triq il-#elsien, #al Qormi Vehicle of the make Mazda MX 5 green in colour with the registration BBJ 968. 11th May, 2015 10.00am – 13/15 EGL Waldorf Auto Services, Triq ta$- !wejt, San "wann Vehicle of the make Hyundai Tucson in black colour with registration number RRA 007 11th May, 2015 11.00am – 15/15 EM Garage no one (1), ix-Xwieki, limits of Hal Gharghur Vehicle of the make Toyota Dyna of white colour with registration number MGC 471, Cutter of the make Narex,Tile Guillotine and other objects. 13th May, 2015 10.00am – 10/15 JGL Sixteen (16), Triq is-Serer, #al Qormi Vehicle of the make Peugeot with the registration number DRE 777 13th May, 2015 11.00am – 30/14 PP Santa Katerina, Limits of Rabat Truck of the make Titan yellow in colour, with the registration number ABG 836. Truck of the make Bedford yellow and grey in colour, with the registration number CAA 293. Van of the make Isuzu, grey incolour, with the registration number DAV 056. Leyland Truck yellow and grey in colour, with the registration number DAI 746. Leyland Concrete Mixer Truck yellow and grey in colour, with the registration number FBE 502. Leyland Concrete Mixer Truck yellow in colour, with the registration number FBN 093. Truck Iveco Pool Hole Borer grey in colour, with the registration number HBA 312. 20th May, 2015 10.00am – 2/15 EM Euroland, Triq #a$- !abbar, il-Fgura Twenty Five (25) aircondition units of the make Gree. 20th May, 2015 11.30am – 1/15 JGL MZ supermarket, Triq il- Kostituzzjoni, Mosta Thirty two (32) aircondition units of the make Gree 25th May, 2015 10.00am – 16/15 PP Garage M, Upper Floor , Capital Mansions, Triq %ensu Xerri, Sliema Diving Cylinder, Trolley for cylnders, Compressor of the make Bauer Kompressoren, Monitors, Wet Suits, lead, Fire Extiguishers, Flippers, Goggles and pipes, Diver HeadHoods,Torches, Television, Flippers and other objects. Further details can be obtained from the website: http://www.justiceservices.gov.mt/courtservices/JudicialSales/search.aspx The bidders taking part in the auction must present their identity card Rudolph Marmara' For the Registrar Civil Courts and Tribunals Progressing very well – Finn, 6, with his parents Julian and Emma McEwen