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Feature: Autism

CEO of Autism SA
Boy with dog beside
Chris Varney
Epic Assist Jay Hobbs & Zach Zaborny

Autism experts

People with autism and their families established Autism SA, the first organisation of its kind in Australia, in 1964. 

The founding members were driven by a desire to ensure they had access to the best information, education, treatment and support. They advocated for acceptance and understanding, and encouraged research and leadership in the community. 

The organisation has since been at the forefront of service development and advocacy and has introduced many firsts to the community in South Australia and nationally, including the first national conference on autism, National Federation of service providers specialising in autism, the first autism-specific school in South Australia and publication of an autism journal.

Other ‘firsts’ include specialised employment services, recognition awards to celebrate achievements within the autism community, which evolved into a national program, initiating the national ‘Future Leaders’ program to involve and engage people on the spectrum as part of hosting the 2013 Asia Pacific Autism Conference, researching and developing the iModelingTM App and the introduction of Australia’s first charter to build autism-friendly business and workplace environments.

Under the National Disability Insurance Scheme (NDIS), Autism SA will continue the path of these pioneers. Funding models, however, have struggled to keep pace with the growth in prevalence of autism, and mainstream services are finding it difficult to accommodate the unique and evolving needs of people on the autism spectrum. 

Autism affects 1% of the population globally and South Australia data indicates an annual growth of 9%. Participation rates in the NDIS for South Australia indicate that autism is the most common disability at 47%. The prevalence is as high as 1 in 29 boys aged ten years, as supported by Autism SA’s verified diagnosis. 

Autism SA’s newly appointed chief executive officer Jenny Karavolos says she will ensure the organisation remains true to its foundations whilst taking advantage of the biggest social reform in the disability sector. 

“The future is all about the rights of people with autism. There is a significant need to do more of what people want and ensure access to specialist and mainstream services to create a community where people with autism can get the most out of life. It has taken 52 years to build 52 years of expertise in autism. The expertise and knowledge regarding all things autism is not something that is built overnight. Our vision is to build on this legacy to ensure that autism remains relevant in the new disability landscape with integrity, trust
and authenticity.” 

Ms Karavolos brings to the role extensive experience in corporate practice, partnerships, negotiation, relationship building and growth of new strategic enterprises. This is coupled with her intimate knowledge and connections with the autism community, and passion to effect social change and challenge the norms. 

“People with autism will be at the centre of everything we do. We will build on our strong foundations to be the autism-friendly ‘go to’ over the lifespan, recognising the unique talents and abilities of people on the spectrum,” Jenny said. 

“Autism SA is redesigning how we operate. We are embracing new, different and innovative ways of providing responsive, adaptable services and holistic support around the individual and their family. We are ensuring our staff can deliver the best possible services. We are partnering with the autism community where there are gaps in services and we continue to advocate for social change. We are developing and providing pathways for more of what people want.”  

For more on Autism SA and how they can help you, call their Infoline on 1300 288 476, email admin@autismsa.org.au or call (08) 8379 6976. autismsa.org.au




Therapy dogs to help kids with autism

A research project is investigating whether using trained assistance dogs in occupational therapy sessions can help children and adolescents with Autism Spectrum Disorder. 

Assistance Dogs Australia, in association with the University of Sydney, is trialling occupational therapy programs in an Australian-first research project.

The research, funded through Scentre Group and Westfield Community Program, involves dogs who are completing their Advanced Training at the National Training School. 

Seventy-five participants, aged between five and twenty, are involved in the program, with some participants selected from Assistance Dogs Australia Parents Autism Workshop Supports (PAWS) groups. 

The trial program, which started in February, sees an occupational therapist running five sessions with a participant, the assistance dog, and the trainer of the dog. The program will focus on three interventions – Self-care (dressing, grooming, eating), Play (imaginative, creative, structured, musical, interactive), and Productivity (social skills, gross/fine motor skills, organisation, planning). 

With the occupational therapist able to tailor sessions to individual participant’s needs, Assistance Dogs Australia expect that the trained dog will either be directly involved with providing therapy, or act as a calming influence during the sessions. 

Occupational therapist Claire Dickson said having an Assistance Dog present in the therapy setting opens up a whole world of new ways to engage, motivate and have fun with the client.

“I feel privileged to be able to observe the children and adolescents in our sessions as they become comfortable around the Assistance Dog, and to see their confidence build as they communicate and play with these beautiful, intuitive animals. It really is an immensely rewarding experience,” Claire said.

“An Assistance Dog alters the typical client-therapist relationship, teaching skills and responsibility as the child gradually becomes the Assistance Dog trainer, giving cues and rewards.” 

With worldwide research indicating that companionship with assistance dogs leads to an increase in engagement of people with autism in social interaction, Assistance Dogs Australia are expecting the project to have positive outcomes. 

Assistance Dogs Australia trains and place assistance dogs with people living with disability, in order to improve their independence. Dogs involved in the program undergo two years of training at a cost of $30,000 per dog, and can help people living with a physical disability with tasks such as opening doors, picking up dropped items, pressing the button on traffic lights, and paying a cashier when shopping, among other tasks.

In addition to therapy dogs for people with autism, they have also trained dogs to help people diagnosed with post-traumatic stress disorder and dementia. 

Results of the project are expected later this year.  




New uni course focuses on autism

A new university course that focuses on autism has been developed with input from people on the autism spectrum.

A unique partnership between the I CAN Network and Torrens University, the Graduate Certificate in Education (Autism) provides students with an in-depth education of autism in the classroom. 

In an innovative twist, the materials used in the course were formulated with input from members of the I CAN Network - a social enterprise founded by people with autism. Members of the network, all of whom are on the autism spectrum, played a pivotal role in developing the course; while staff from I CAN had direct input into the strategies taught and helped create a series of videos to be used in the classroom.

The Graduate Certificate will educate students on the challenges that individuals with autism can experience in the classroom, providing them with the understanding and skills needed to not only support students, but to embrace and leverage autism to enhance the student’s strengths.

“More and more teachers are interacting with students with autism in the classroom, whether they trained in special education or not,” said I CAN Network’s chief enabling officer Chris Varney. 

“So of course it is vital that teachers are given the right tools to bring out the best in these young people. Too often, teachers are unsure what to do and this is detrimental to everyone involved.”

The partnership between I CAN Network and Torrens University was formed through the university’s interest in co-designing content with learners. I CAN Network was approached by Torrens because of its 50% difference – half of the I CAN Network workforce is on the autism spectrum, offering a rich diversity to the content of the course. 

Enrolment into the Graduate Certificate is open to current and existing teachers as well as any service providers who feel their work may be enhanced by a better understanding of how to embrace autism. 

“We expect that this will open the door to a better understanding in the community of what autism is and what individuals on the spectrum can offer the community when they’re offered the right opportunities,” Chris said. “If we get it right from the start, from the moment they enter the classroom, we will see them flourish and see what they CAN do, not what they can’t.”  




Getting it right

The Cooperative Research Centre for Living with Autism (Autism CRC), in collaboration with the NDIA, is developing Australia’s first national diagnostic guideline for autism.

Substantial variability exists across Australia in autism diagnostic processes causing confusion for families, clinicians and government. Developing a national diagnostic protocol is a critical step to ensuring consistent and equitable access to autism diagnosis across Australia for both children and adults.

Extensive stakeholder engagement is now underway with a guideline due for release in late 2017. Visit the website to find out more autismcrc.com.au/diagnostic-guideline




Research round-up:


Rethinking autism in the workplace

Not-for-profit disability employment organisation EPIC Assist has joined forces with Danish company Specialisterne to find sustainable employment for people on the Autism Spectrum.

“The number of people on the spectrum in Australia appears to be on the rise,” said Specialisterne Australian chairman John Craven.

“Whether this is an actual increase or just more people being diagnosed, we don’t know. What we do know is that people on the spectrum have a lot to offer to prospective employers and workplaces, and the fact that there are so few in employment is unacceptable.”

Zach Zaborny is a young man on the autism spectrum who understands firsthand the employment struggles faced by people with disability. He has found a supportive employer in EPIC Assist and is thriving in his role, but it hasn’t always been smooth sailing to reach this point.

“Seeking work hasn’t always been easy. In the past I have struggled with support from employers and getting them to understand how I really like tasks and structure,” said Zach.

Zach points to interviews and social interactions as two common areas where people on the spectrum typically struggle.

“Someone on the spectrum might be perfectly qualified for a role but struggle in an interview setting. We have certain ideas about how someone should answer an interview question, and if they don’t answer in that manner, they don’t get the job.”

Mr Craven agrees that the key to change lies in education and changing age-old mindsets. 

“We need to develop workplace processes that harness the autistic attributes, not fight against them. We know people on the spectrum struggle to cope with standard hiring practices and are therefore unsuccessful in finding work. It’s a vicious cycle,” said Mr Craven.  


Vitamin D in pregnancy may reduce autism

Pregnant women with low Vitamin D levels are more likely to have a child with autism, according to new research.

The University of Queensland study found that pregnant women with low Vitamin D levels at 20 weeks’ gestation were more likely to have a child with autistic traits by the age of six.

“This study provides further evidence that low vitamin D is associated with neurodevelopmental disorders,” Professor John McGrath said. “Just as taking folate in pregnancy has reduced the incidence of spina bifida, the result of this study suggests that prenatal Vitamin D supplements may reduce the incidence of autism.

While it is widely known that Vitamin D is vital for maintaining healthy bones, there is now a solid body of evidence linking it to brain growth. Professor McGrath’s team has previously found a link between low Vitamin D in neonatal blood and an increased risk of schizophrenia.  


Social cures

Psychology researchers at the University of Queensland have shown a relationship between features of autism spectrum disorder (ASD) that were previously thought to be unrelated.

“Autism is a multi-faceted disorder characterised by distinct clusters of features,” Dr David Skorich said.
“One of these clusters relates to the ability to share attention with others, and to focus attention on the objects or events on which someone else is focused. People with ASD show a decreased tendency to do this.

“A second cluster is related to information processing, where people with ASD process information in a less integrated manner, referred to as ‘weak central coherence’. Our research suggests that weak central coherence actually causes the shared attention difficulties.

“We found that the information processing needed for self-categorisation—the process of coming to see oneself as interchangeable with other members of groups to which we belong—is weaker the more autistic-like traits a person possesses, which in turn predicts the decreased tendency to share attention. So it seems that the decreased tendency to see oneself as part of a group is at the heart of the differences people with ASD show in their social interactions
with others.”

Dr Skorich said the research had implications for intervention, and suggested that a social cure perspective on health and wellbeing, such as the university’s Groups 4 Health program, could be adapted to treat the much higher rates of anxiety and depression seen in people with ASD.  



Information the key

Recognising the need for more information for parents whose children are diagnosed with autism, a New South Wales mum developed an app to help other families. Rebecca Keysers, the founder of Autism Link, shares her story.

Kaiser is my first born son. He was a delightfully happy, easy going, relaxed baby who never complained about anything. At 2.5-years of age he went off to daycare for the first time, and that was when I felt my world come crashing down. A few issues were discovered and the suggestion was made that Kaiser may be autistic. I cried and cried and cried for a few days. I was in denial as nothing had been formally confirmed, and I worried what the future would hold for him. I started thinking that he would need care for the rest of his life, that he wouldn’t get married, or have a career. This feeling soon passed as I realised I did not know enough about autism, so I made it my job to do lots of research and reading. 

My misconceptions about autism were totally wrong - not that it mattered anyway, as Kaiser is my son and no matter what disability he had I would still love him the same. His years ahead involved lots of speech therapy and occupational therapy. Watching him grow and evolve was amazing. During these years Kaiser and I were very close, and I realised he doesn’t have a disability at all - he just views things differently and in great detail. He is incredibly bright, with many fantastic qualities and extraordinary talents. He can sing beautifully, play musical instruments, is very affectionate, learns new things very quickly, enjoys challenges and has many friends. I don’t know what I was ever worried about as I wouldn’t change a thing. He is now in year one at school and continues to progress in communication, which was his main struggle. 

During this beautiful journey it occurred to me that there are many challenges that parents face after receiving a diagnosis of autism. I decided that a directory was needed and created a plan for an app that would be useful for families Australia-wide to find autism-related services in their area. This is when Autism Link came alive! 

I was lucky enough to find an app developer, Appiwork in Bathurst, that believed in my idea from the get go, and gently pushed me to get the ball rolling. They helped me draft a beautiful app and website design which enabled users to search for services by typing their postcodes into the search engine. My Autism Link App and website is a one-stop-shop for everything autism. Families can find information on early intervention, therapy, psychology, respite, education, resources, support groups, mobile therapy services, disability services, all in one place and make an informed decision about the best support for their child. 

With growing numbers of children affected by autism, community support is vital to help them lead happy and connected lives. Without the correct support, services and resources, the quality of life for kids with autism may be detrimentally affected. They may feel as though they don’t belong and find it difficult to form friendships. Likewise, families with autistic children can find it challenging to find support for their kids and may feel isolated within their own communities. This is where Autism Link comes in.

I have big plans for extending Autism Link with many other services and to include support for teens and adults on the spectrum. If you are a service that provides support to people with autism then please visit www.autismlink.com.au to create your listing, and help families Australia wide locate and access autism related services.

Autism Link app can be downloaded for free on Apple iTunes or Google Play.  



Supporting the supporters

A stable, secure and loving home is vital for children to grow and develop to their best potential. Sadly, this isn’t the reality for many young people and can be particularly challenging for a child also living with complex needs, such as autism. Thanks to the dedication of foster carers all around Australia, these children are being given a bright new start with full-time carer families, and receive added supported from respite carers once a month.

Kelly* a social worker, knows the importance of providing respite care to sustaining full-time foster care. She provides respite care one weekend a month for two girls aged seven and eight years old, who both live with autism. Outside of school activities, their opportunities to form friendships have been minimal due to their care requirements, so Kelly enjoys the chance to introduce them to new friends and new experiences on the weekends they spend with her. 

“The girls now look forward to playing with my two full-time foster children, and participating in our outdoor exercise classes on the weekend,” she says. 

Kelly finds reward in the knowledge that her support means the girls will stay with their full-time carers in their stable and loving home longer.

Uniting Communities is a South Australian based organisation which helps to find foster care accommodation for children and young people living with disability, many of them with autism. Uniting Communities’ foster care program prides itself on the personalised service and support for foster carers as they welcome children into their homes, and continue to care for these children. 

People interested in learning more about foster care for children living with complex needs can contact Uniting Communities on (08) 8202 5190.  

*Name has been changed.



School support

A program that helps primary school children with autism build emotional and social resilience –
and teaches their classmates about the condition – has been developed by researchers at the Autism Cooperative Research Centre (CRC).

The Secret Agent Society (SAS) Small Group Program is a breakthrough multi-media social skills program used with 8 to 12-year-old children with a range of social and emotional challenges. Drawing on the strong evidence base of the SAS Small Group Program, Autism CRC researchers have developed a classroom program to benefit even more children.

The research team, from The University of Queensland, has worked with staff from all school systems to identify priorities, the result being a whole of classroom program that is user-friendly for staff and engaging for students.

“It is hoped that by expanding the delivery of SAS, all children can learn how to crack the codes of emotion management, problem-solving and friendships in a fun, engaging way,” said Dr Renae Beaumont, who developed the SAS program.

“We have clear evidence that the Secret Agent Society program is effective in small groups and this is translating well into a larger whole classroom setting.”

Incorporating additional content to promote peer inclusion and acceptance, the SAS Whole Classroom Program includes an education session for peers about autism and how they can support their classmates on the autism spectrum. With a better understanding and appreciation of difference, children learn key steps for talking and playing with others in a friendly way. The ‘Bully-Guard Body Armour’ provides a step-by-step formula for preventing and managing bullying and teasing. 

“Throughout the program, a class-wide rewards system encourages students to include and support each other. Students are also partnered with a classmate and are charged with helping their partner in areas that they struggle with, and to celebrate their strengths,” Dr Beaumont said.

A step-by-step problem-solving formula, the D.E.C.O.D.E.R, can be applied to academic problems and social challenges and includes the ‘Top 10 negotiation tactics’ for working and playing with others.

“Students and staff learn how to recognise and manage emotions, solve problems and make friends and keep them. The program provides a common language to help students support each other to apply these skills,” Dr Beaumont said.

Teachers involved in the first trial have reported a positive response from both the students and their parents. 

“We have worked with school staff to ensure that we have developed a program that can be implemented as part of the current Australian curriculum. Following the 2017 trial, we hope to make the program available to all Grade 5 students to support them to feel happier, calmer and braver to achieve their best,” said Dr Beaumont.   

Find out more about the Secret Agent Society here: sst-institute.net



Autism and agriculture

People with autism often struggle to find employment, however a new initiative of SunPork Farms and the Cooperative Research Centre for Living with Autism (Autism CRC) is delivering results.

Autism and Agriculture aims to employ and develop career paths for adults on the spectrum in specialist animal care roles.

Under this world-first innovative employment scheme, seven autistic adults have been employed in Queensland and training is underway in a South Australian piggery for the second cohort of candidates.

Individuals on the spectrum have a very high rate of unemployment or underemployment with a labour force participation rate at 34% compared with 54% participation rate for people with disabilities. 

The chief executive and managing director of SunPork Group, Dr Robert van Barneveld, said individuals with autism often have the skills to do the job extremely well, but social and communication difficulties can create barriers to long-term employment. 

“We know adults on the spectrum have key strengths that are of significant benefit to the workplace,” he said. “SunPork Farms is harnessing the diverse skills some autistic individuals have in animal care to provide sustainable employment in the agricultural industry and ultimately enhance the welfare of our livestock.”

The program team has adapted and applied existing Specialisterne techniques used in the IT sector, to support candidates through the recruitment, employment and evaluation process in the agriculture sector. All new autistic employees are paid a full, unsubsidised wage by SunPork Farms for the jobs they perform.

“With appropriate support and training, for both the autistic candidates and SunPork Farms employees, we believe the pilot program will deliver long-term benefits to our business,” Dr van Barneveld said.

“Employing adults with autism will bring a range of different views and the capacity to innovate our business to ensure we remain a world leader in pork and food production.” 

Project Leader for Autism and Agriculture Dr Kirsty Richards said that the project has shifted the paradigm for employee recruitment and selection.

“We’re providing people with opportunities to show us, rather than tell us, their abilities to care for our livestock, develop new skills and work safely,” Dr Richards said.

“To see our new employees gain confidence and earn satisfaction from their work is extremely rewarding for the entire SunPork Farms team. Watching them transform as individuals, form their first friendships and become part of our team has been life-changing. The success of this program also challenges business more widely to relook at traditional recruitment, training and support frameworks to better accommodate a diverse workforce.”   

Visit autismcrc.com.au to learn more about research progress.