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Chair Person’s Report Inaugural AGM

Welcome to the inaugural Chair Person’s Report for the Autistic Self Advocacy Network of Australia and New Zealand. I am pleased to bring you this report regarding our first 18 months of operation.

As a fledgling organisation much of our initial activity was focused on getting our structure in place.

Our inaugural Board consisted of the following people:

Katharine Annear – Chair
Geraldine Robertson – Secretary
Tony Langdon
Jarad McLoughlin – Treasurer
Leeanne Marshall
John Greally

To these people we owe a lot of thanks in terms of setting up ASAN AUNZ.

During the first period of operation we also co-opted Joel Wilson and saw John Greally take leave because of ill health. John’s replacement Emma Goodall was a welcome co-option to the Board. We thank John for his service.

Activities:

Despite our beginning stages we were involved in a lot of activity during our first period.

The Future Leaders Program
ASAN AUNZ was on the organising committee of the inaugural Future Leaders program run as part of the Asia Pacific Autism Conference held in Adelaide SA. We were pleased to be able to provide input for such a groundbreaking program and look forward to an ongoing association with the Future Leaders Program.

Face to Face Board Meeting with Ari Ne’eman
During the Asia Pacific Autism Conference we were supported by the Federal Government through FaHCSIA to meet face to face which included the opportunity to meet with Ari Ne’eman founder of the Autistic Self Advocacy Network in the USA. We were happy to achieve a sense of common goals and discuss potential future projects with Ari.

The Research Agenda
ASAN AUNZ has taken a particular focus on addressing the lack of representation of Autistics in the research pertaining to them. To this end we have actively pursued a campaign of writing to researchers and research cooperatives to raise our concerns. In particular we have focussed on the establishment of the Autism Cooperative Research Centre. We are pleased to have been able to get our message across but await formal involvement in the CRC itself. However I am pleased that two ASAN AUNZ members are on separate CRC advisory committees.

Systemic Advocacy
During this period we have also taken a systemic approach to advocacy and made several submissions to government enquiries including individual submissions to the Inquiry into Forced Sterilisation of Women and Girl with Disability and a submission on the terms of reference for an enquiry into equality under law for persons with disability. The Chair also attended the meeting of Peak Disabled Peoples Organisations in Canberra.

Establishing an Online Presence
We have been very fortunate over the last 12 months to have Joel Wilson as volunteer web intern. Joel has focussed on keeping the website and Facebook presence ticking over and has helped us utilise technology for our meetings. A big thank you to Joel for his support.

The following people will stand down from the Board at this meeting so I would like to take the opportunity to thank them for their invaluable input.

Leeanne Marshall – not renominating
Joel Wilson – not renominating
Emma Goodall
Geraldine Wilson

All of you have been part of the inaugural operations of ASAN AUNZ and as such have an important place in our history.

On a personal note I would like to thank Tony Langdon and Geraldine Robertson whom I have known for getting close to 15 years. Together we kept the dream alive and here we are. Much Solidarity!!

As a Board we have set the following Strategic Priorities for the future period:

Strategic priority one: Autistic inclusion in research.
Strategic priority two: Increase social media presence.
Strategic priority three: Support the Future Leaders Program 2015.
Strategic priority four: Lobby for wage equality and increased employment participation for people with disability.

We hope you will join us in steering our future course.

Sincerely

Katharine Annear

Chair Person
ASAN AUNZ

ASAN AUNZ response to Sheltered Workshop Payout Scheme

*Information in this blog sourced from The Age: http://www.theage.com.au/federal-politics/political-news/disabled-workers-go-to-federal-court-over-back-pay-20140119-312rx.html

By Joel Wilson, for the Autistic Self Advocacy Network of Australia and New Zealand.

Under laws for Australian Disability Enterprises (sheltered workshops), many disabled staff have been ‘legally’ paid about $1 to $2 an hour despite Australia’s supposed minimum wage being $16.37 an hour.

Yes, you read that correctly. There’s a clear gap between the supposed minimum wage, and the legal obligations of employers.

I know what it’s like to be placed in a sheltered workshop. When I was 18, and living in a group home, I spent 8hrs a week working at a place in metro Perth, putting velcro stickers on X-Ray envelopes. I was getting somewhat between $5-$6 per hour. The work wasn’t hard, however I was capable of so much more. The issue being, in a group home, I was labelled unable to work in a regular work environment, and deemed incapable of performing tasks beyondusing stickers.

However, that’s just my story. I worked alongside other autistics, who needed a lot of support to perform the sticking tasks. Yet, they were still given that chance to participate in a work environment.

Unfortunately, businesses take advantage of the sheltered workshop scheme, or Australian Disability Enterprises as they are now called, with 300 across Australia employing around 20,000 people in work including manufacturing, packaging, and cleaning.

The Australian Government seems it appropriate to define 20,000 Australian wages based on a label of a disability, or impairment. Even though a court case in 2012 ruled that staff in sheltered workshops have been underpaid for many years, and this was a breach of the Disability Discrimination Act.

Not only that, the Abbott Government last week announced it will be making a one-off payment in July to these underpaid Australians.

But there’s a catch. Those who agree to the payment will waive their rights to sue for potentially a much larger, and deserved amount.

This announcement has been made just weeks after legal firm Maurice Blackburn lodged a class action seeking the underpaid funds. Maurice Blackburn industrial relations head Josh Bornstein said: “This government is attempting a shakedown of intellectually disabled people.”

Maurice Blackburn will be lodging a court application this week to stop the Government’s scheme, and push for the correct earnings to be repaid.

The average price for a loaf of multigrain bread is between $2.50-$3.50. A small jar of peanut butter is $3.50. That’s $7. On the wages some of these people are on, they’d have to work 7 hours just to afford bread and peanut butter.

I hope that the rest of Australia realises that just because someone is labelled with a disability, they still deserve the rights of every other Australian; and that this undoubtedly stressful legal process is over soon, with the right outcome – what they deserve.

The Autistic Self Advocacy Network of Australia and New Zealand committee does not condone lower wages for people with disabilities, and feels that the Australian Government are failing to do the right thing by the people involved.

Clinton Taylor and team to take second ride for autism awareness

Article by Eisten McGleenan, for The Advertiser

A DIAGNOSIS doesn’t change your child, but it changes the way you relate to them and help them learn, according to mother of three, Crystal Taylor.

With two boys, Oliver, 4, and Brayden, 5, diagnosed with autism, Mrs Taylor said it has been a huge learning curve for her and husband Clinton.

They were diagnosed at the same time in 2012 after early intervention with St Giles and the Early Childhood Intervention Service, who provided speech therapy, occupational therapy and an autism specific pediatrician, and specialists to find a diagnosis.

“Then you start to get your head around autism,” Mrs Taylor said,

“It doesn’t change your children but it changes the way to relate to them and the way you help them learn,” she said.

“Sometimes they need different methods to help promote best outcomes,” she said.

Oliver is completely non- verbal and Brayden was also non verbal until the age of five.

“Verbal communication is a challenge and requires a lot of patience.

A task such as grocery shopping can be difficult for anyone with young children, but for Mrs Taylor taking her two boys, there are even more factors to consider.

“Oliver, our four-year-old, can get very frustrated and overwhelmed by being in the supermarket with visual stimulation, and lots of people and noise.

“His response is to cry and scream, because he has no words to communicate but he is using the best way he can,” she said.

“People might look and think he is just being naughty,” she said.

She said it was challenging to manage situations like that because of the pressures involved.

“I guess there are three different emotions with that,” she said.

“One is I put pressure on myself as a parent to do the best you can as a parent for your children.

“Two, the external pressure to what you perceive people might be thinking, even if they’re not.

“And then, looking after your child’s well being, you want to make sure their experience is just as good as any other children,” she said.

Mrs Taylor has learnt different ways to help her children cope with overwhelming situations.

“For Oliver, it’s holding a green pencil that calms him down,” she said.

She said the work autism specific organisations were doing with children including her own was really important.

“I think the work that all the organisations do, St Giles, ECIS and Autism Tasmania does for us as parents on this journey, it maximises learning outcomes,” she said.

“[Brayden and Oliver] really are very gifted and it helps us to bring out the best,” she said.

“As parent when you get that diagnosis you might be scared, but then as time goes on, you realise it does not put as many limitations on your child as you think it would,” she said.

Last year Mrs Taylor and husband Clinton organised an autism awareness ride to raise funds ($7000 in total) for Autism Tasmania and promote awareness about and acceptance of autism.

“Last year during the ride we spent two weeks away from home in a motor home and the boys adapted incredibly,” she said.

“It made me realise there is so much ability in them, and we need to embrace that,” she said.

Clinton Taylor and a team of cyclists will compete their second Ride Tasmania for Autism Awareness starting on March 22. It will come to the North-West:

- March 27: Launceston to Devonport (via Deloraine)

- March 28: Devonport to Burnie ASD Centre

- March 29, 30: Burnie to Queenstown

- March 31: Queenstown to Derwent Bridge

To support the cause: https://give.everydayhero.com/au/ride-tasmania-for-autism-awareness

Read More: http://www.theadvocate.com.au/story/2017153/clinton-taylor-and-team-to-take-second-ride-for-autism-awareness/?cs=87

autism_or_autistic

Autism Spectrum Disorder Vs Autism Spectrum Condition?

Sourced from YouTube, text by Joel Wilson, ASAN AUNZ Web Intern

Simon Baron Cohen discusses whether we should use Disorder, or Conditions, when discussing the Autism Spectrum.

 

I’ve broken down some of the key points; however If you have the time I suggest you watch/listen to the 32 minute video above.

Definitions

Disorder :

  • “Lack of order or intelligible pattern”
  • “Randomness”

Condition:

  • “A state of being”
  • (“social conditions” or “the condition of your health”)

 

Pros and Cons of both ASD and ASC

Pros of “ASD”: Implies severity and suffering

  • Epilepsy, self-injury, mutism, gastro-intestinal pain, general learning difficulties

Cons of “ASD” 

  • Most cases don’t involve these features
  • Implies something is broken
  • Is more harsh and stigmatizing
  • The neurobiology shows difference, not dysfunction
  • The psychology shows deficits, differences, and assets

Pros of “ASC”

  • Signals biomedical, disability, and vulnerability
  • Less hard-hitting and more respectful
  • Can include range of severity
  • Acknowledges both deficits, assets, and a different “cognitive style”
  • Carries fewer value judgements/more neutral

Cons of “ASC”

  • “I can’t think of any”

 

Why Disorder?

The DSM (and american doctors) loves “disorder”

  • Reading Disorder
  • Mathematics Disorder
  • Oppositional Defiant Disorder
  • Major Depressive Disorder
  • Intermittent Explosive Disorder (Anger issues)

The main reason for all these new Disorders, is because America would not offer health insurance if they weren’t categorised as a Disorder.

The DSM puts autism in the “Pervasive Development Disorder” area.

The American Psychiatric Association has renamed “Autism” to “Autistic Disorder” and “Asperger Syndrome” to “Asperger’s Disorder”.

Why the changes?

Interior Design for Autism eBooks

Article by Levent Ozler, for www.dexigner.com

The American Society of Interior Designers and Wiley Publishing have released a series of three “design shorts” explaining the ways in which the design of interior spaces can improve the experiences of autistic individuals.

Over the past decade, a growing body of research has emerged indicating specific design strategies can be used to create optimal living and learning environments for people with autism, throughout various stages of life.

“ASID members believe strongly in the contribution interior design can make to wellness across ages, life circumstances and health challenges,” commented Randy Fiser, executive vice president and CEO of ASID.

“So we are excited by ASID member A.J. Paron-Wildes’ new series of books that provides design strategies, based on research, that improve the built environment for autistic individuals. We applaud our colleague’s efforts and encourage interior designers everywhere to employ evidence-based design principles in their work with clients facing other health concerns as well.”

The first eBook, Interior Design for Autism from Birth to Early Childhood, focuses on project types that are most important for autism in this age range, such as those in home environments, schools and clinical therapy centres.

Interior Design for Autism from Childhood to Adolescence covers project types such as those in high schools, residential group homes and workplaces, while Interior Design for Autism from Adulthood to Geriatrics concentrates on workplaces, clinical settings and nursing homes.

All three titles are essential reading for interior designers and interior architects as well as for stakeholders involved in treating and/or living with people with autism or other neurological impairments. The titles can be purchased here: Interior Design for Autism Books


Read More: http://www.dexigner.com/news/27208

Maryborough teen hunting for zombies for his next film

Article by Stephanie Kay, Fraser Coast Chronicle

HIS first flick, about life with Asperger’s, garnered national attention and now local filmmaker Nick Aiton is at it again, this time adding zombies to the mix.

Nick’s debut film, Life is a Circus screened on Foxtel’s TV, channel 183 in December.

He is now casting for his latest production, a zombie promotional trailer film with auditions planned in Maryborough on January 5.

“I am also casting for a short film shooting in March which I hope to enter into the Heart of Gold film festival. held in Gympie in 2014.”

Nick said his first film was a stepping stone into the industry.

“This film has not only helped me come to terms with my Asperger’s but other people with asperger’s have e-mailed to say how much they relate to the movie,” he said.

“They have thanked me for helping their family and friends understand them better after watching it.”

A chance meeting with director Chris Sun and actress Paula Duncan inspired Nick to begin making his films.

“They encouraged me to make a short film for the Nova Focus on Ability competition.”

For details about the audition, email casting@harlequinfilms.com.au – anyone wanting to try out is welcome.

Read More: http://www.frasercoastchronicle.com.au/news/maryborough-filmmaker-nick-aiton-back-behind-camer/2128010/

December 2013 Newsletter

Dear ASAN AUNZ Member or Supporter,

Thank you for your patience and support in our first year as a registered organisation. We are a small committee of dedicated volunteers who all live busy and complex lives like many of you do. It may have seemed we were missing in action at times but there was lots of behind the scenes work being done. We are proud to have established the formal side of the Autistic Self Advocacy Network of Australia and New Zealand and look forward to growing in 2014. A highlight of this year was meeting Ari Ne’eman founder of our US based affiliate and we have some ideas we are working on that will come to fruition in the near future – including contributing an Oceanic perspective to the Autistic run media in the USA. Another highlight was being invited to contribute to a forum discussing the future of Disabled People’s Organisations in Australia and we look forward to a new model of representation being launched in 2014.

This year our systemic advocacy has been focussed on:
Research
Equal access to the law
Prevention of abuse
Access to disability reforms for Autistic adults

As part of our growth we would like to find out what you as members are interested in. We would be grateful if you could take our short survey which can be found here: https://www.surveymonkey.com/s/MSZWGHK

We are working on refreshing our website and would welcome contributions. Our volunteer intern Joel will be happy to take your input and suggestions. Joel can be reached via email: joel@advocacyanywhere.com

We wish you all the best for the beginnings of 2014.

Our next Update will include the notification for our AGM.

All the best from the ASAN AUNZ Committee

Can fictional characters be Autistic?

Original Source: The Telegraph Author: Kimberly Gillan; Approving editor: Rory Kinsella

Sherlock Holmes’s attention to detail, focus and lack of understanding of social cues could make him one of the most famous fictional characters with autism, according to a leading UK autism organisation.

The National Autistic Society (NAS) also said Saga Noren on The Bridge, as well as Ricky Gervais’s character Derek, could have autism.

“Sherlock really focuses on one thing, for example in the latest series there is an episode where his brother comes over to New York and they are supposed to be going for dinner but Sherlock says we can’t, we are working on this case – it is an unnecessary distraction,” Robyn Steward, an NAS autism consultant, told The Telegraph.

“He also has this ability to concentrate and he memorises and links things in quite a unique way, all these things could be linked to being on the autistic spectrum.”

The characters all show passion for particular subjects, stubbornness and often struggle with sarcasm, which are all traits common to people on the autism spectrum.

“There is a real misunderstanding of people who are on the spectrum, and if Sherlock was a real person and people met him they might be scared of him because he is different,” Steward said.

“The great thing about Sherlock is that he is using his traits as a person potentially on the spectrum to do something positive and he is achieving something. People on the spectrum are just people, they might have a few different traits, and they might find some things more difficult, but they are still a human being first and foremost.”

Nicole Rogerson, CEO of Autism Awareness Australia, told ninemsn making these associations can help the broader community understand that people on the autism spectrum have a lot of skills to offer.

“We are so used to talking about the challenges involved in autism and it’s really important to talk about some of the positives that come out of that as well,” she said.

“If we can garner all of the really positive traits that come with some forms of autism and we manage people so they are socially able, they can go on to be really successful.”

Rogerson said Australian companies could benefit from targeting people with autism for particular roles.

“Companies need to appreciate that by hiring somebody on the spectrum, you can get all of those fantastic things like attention to detail, passion, ability to really concentrate,” she said.

Murray Dawson-Smith, CEO of Amaze, told ninemsn that autism is a complex disability and he said labelling people, even if they are just characters, as having autism without an official diagnosis is concerning.

“There is a risk that you romanticise the challenges that someone on the spectrum would face,” he said. “You look at Sherlock Holmes and the danger is that you are going to associate everyone with autism with Sherlock Holmes. Just because you are really good at concentrating does not mean you are autistic.

Dawson-Smith said labelling characters as having autism does not portray an accurate picture of life with autism.

“The vast majority of people on the spectrum struggle with many aspects of day to day living, I’m always nervous about assigning autism spectrum disorder without a proper diagnosis.”

Read More: http://health.ninemsn.com.au/healthnews/8772467/sherlock-holmes-probably-has-autism

*ASAN AUNZ Editor Note: Some famous people who either have/had/believe to have had Autism/Asperger’s include the following:

  • Albert Einstein (scientist)
  • Amadeus Mozart (musician)
  • Temple Grandin (Doctor of Animal Science/Autistic Advocate)
  • Courtney Love (Musician/Actress)
  • David Byrne (Musician – Talking Heads singer)
  • Tim Burton (Film producer/Animator)
  • Bob Dylan (Musician)
  • Bill Gates (Microsoft Founder)
  • Andy Warhol (Artist)
  • Woody Allen (Actor/Filmmaker)
  • Michael Jackson (Singer/Songwriter/Dancer)
  • Dan Aykroyd (actor/comedian) Article: http://ca.omg.yahoo.com/blogs/north-stars/dan-aykroyd-reveals-asperger-tourette-161859123.html
  • Ladyhawke (NZ Musician)
  • Adam Young (Musician – Owl City)
  • Isaac Newton (Physicist/Mathematician)
  • Stephen Spielberg (Director/Producer)
  • Abraham Lincoln (16th US President)
  • James Garfield (20th US President)

Of course, there are a lot more “famous” people out there that most probably have autism. And there’s likely to be a few diagnosed/undiagnosed autistics in your neighbourhood.

Nothing about us without us: A research agenda

Media Release

Nothing about us without us: A research agenda

 Autistics want to collaborate on genetic research that determines their future.

 In light of the recent resounding success of the Asia-Pacific Autism Conference 2013 in creating a positive and collaborative, Autistic friendly environment that valued contributions of people on the autism spectrum we call for the same approach in the autism research community. We believe that APAC 2013 has demonstrated that working together for the betterment of the lives of Autistic people is possible and should be embraced by our research communities.

This inclusion should not merely be a nod to the existence of Autistics it should value their contributions to setting the research agenda and to grappling with some of the contemporary ethical challenges faced by the research community.

If there are to be discussions about the future of the very existence of the genotype of autism and therefore Autistic people we should be involved in those discussions in meaningful ways. There is not a black-and-white answer to the question of pursuing genetic research. The conversations that need to be had need to be deep and deliberative and must include the community of interest.

In particular we call upon the Cooperative Research Centre for living with Autism Spectrum Disorders, the Australasian Society for Autism Research and the Olga Tennison Autism Research Centre to create specific positions for Autistic people within their governance structures, as reviewers of research methods and as decision makers in determining allocation of funds.

Furthermore, we call on the Federal Government to ensure that it does not distribute research monies to consortia that do not have a strategy to ensure the voice of autistic people is sought.

We are convinced that this is the way forward and that Autistics have a great deal to offer the research community particularly in terms of contemporary ethics and participatory approaches to research.

Media Contacts:

Katharine Annear 0400 003 656 & Geraldine Robertson 0488 651 500

A Long Time Coming

Written by Katharine Annear ASAN AUNZ Chairperson

I am Autistic. Not the kind of Autistic that was stereotyped in the decade I was born (the 1970’s). I am part of the wave people diagnosed later in life with the autism spectrum disorder, Asperger syndrome. I was diagnosed at the age of 30 – a long time coming. I had an early life peppered with social and emotional difficulties and treatment for depression, anxiety and behavioural problems. My life was not a joyless struggle though as I found solace in intellectual pursuits, reading and art. I also partook in many teenage rites of passage – although not with the social sophistication of my peers. I have also achieved success beyond even my own expectations and am grateful for the opportunity to have had my life put into perspective by the diagnosis I received.

 

Life for many Autistic people was a struggle over much of the 20th century; from the definition of the disorder to varying attempts to treat it. Many children were deemed simply too difficult to treat and were put away in places to be forgotten about. Others underwent rigorous behaviour modification utilising water spray and electric shock. There were also a generation of mothers who were blamed for their child’s autism by a charlatan of a doctor named Bruno Bettelheim.

 

In the 21st Century the picture is thankfully somewhat different in that institutionalisation and punishment are no longer part of the recommended regime for Autistics. Society though is still on a long journey to acceptance of people with autism and autism is still a confusing and often distressing set of social, communication and behavioral difficulties affecting individuals and families.

 

During 2102 after working as an informal network for over ten years a group of Autistic people (diagnosed with both autism and Asperger syndrome) registered a not for profit organization, the Autistic Self Advocacy Network of Australia and New Zealand. This was also a long time coming. We as Autistic adults recognise that a proactive stance means that thousands of children and young people will inherit a more effective system and a more understanding community and that our strengths talents and efforts will be recognised alongside those of our peers.

 

Self-advocacy is a tricky concept as it requires conditions such as self awareness, self-confidence and persistence. Persistence is one thing we have in abundance but the other qualities are things that are affected not only by autism but also by society’s enduring marginalisation through lack of appropriate supports, and through neglect and abuse.

 

All of this is important to understand in the light of recent events in the autism community.  The Asia Pacific Autism Conference ran over the past week and several things took place that have been a long time coming. The conference itself was the largest in the southern hemisphere and this year for the first time ever it supported and embedded self-advocacy program for young people with autism aged 18-30 aptly named Future Leaders. These young people also greeted eminent Autistics from around the globe including Ari Ne’eman member of the US National Council on Disability and President of the Autistic Self Advocacy Network. These events mark a profound shift in the recognition of the need to support Autistics to have a voice of our own and to learn to contribute to the many levels of research and policy making that affect us.

 

This exciting time was juxtaposed by the premiere of a theatre work called ‘History of Autism’ devised and performed by Company@ Autistic Theatre, directed by Julian Jaensch another Autistic diagnosed later in life. This theatre piece traverses the 20th century and examines the history and impact of autism the condition and autism the diagnosis and chronicles the treatment of individuals and families affected by autism. Ironically as a member of Company@ my biggest role in this piece was to play a 1970’s housewife struggling to bring up a child on the autism spectrum. Whilst the story is not derived from my own there are echoes that resound and storylines that traverse the years of misunderstanding and mistreatment of Autistics. Audiences were deeply affected by the performances metered out by the Autistic cast and the degree to which they bring home the power of our personal and political struggles.

 

When all is said and done during this brief point in history I hope that we have begun to carve out a legacy for those that follow in our footsteps and that one message resounds ‘Nothing about us without us’

 

A long time coming.