So what happened to 2011. It went somewhere. 2011 was reminder that things must come back into balance and that life as we know it is fragile. Autistic life is even more fragile still. If you want to be out there doing it every day, whatever it may be, then you walk a fine line. Sometimes you may burn brightly and others you err on the side of a darkness that threatens to consume your very soul. My 2011 had me walking the fine line. Travelling to Canada to present at a feminist conference and winning a new job to ending up questioning my very existence and trying to answer questions that only depression can pose. So at the end of the year I have said goodbye to a long association with Autism SA as an employee and a Board member and I am looking forward to just being a part of the rich autism community in SA. 2012 will bring new things as I consolidate and look for new work and healthier work/life balance. I am putting it out there, to the universe, to bring in the balance, the give and the take, the passion and the reprieve, the joy and the sorrow, and the hope and the fortitude to see me through.

I finally bit the bullet and bought dictating software. So now begins the task of training the software, which thus far seems to be pretty easy. In fact, I think that this software has come along leaps and bounds since I last t time I tried it.  I gave this blog address out to someone so I thought I had better update the blog. The start of   2011, has been tumultuous to say the least. Along with world events, work and life events have taken some interesting turns. I have begun lecturing at the University one day a week. I am developing a new topic entitled    –community development, funding and tendering for human services. This has been a much-awaited challenge and has been a source of much enjoyment. To say I’m on a steep learning curve would be an understatement. I have very much enjoyed testing my existing knowledge and gaining new knowledge in order to develop and deliver the topic.

Things on the work front seem to come in cycles. We have experienced some real upheavals including the untimely death of a colleague. However, I am heartened by the fact that we can move forward and continue to deliver some amazing programs to people living on the autism spectrum. The major highlight has been the delivery of a filmmaking boot camp to 15 teenagers on the autism spectrum. In five days, these young people had the opportunity to work with professional filmmakers learning the craft of scripting, storyboarding, filming, editing and acting in short films.  The culmination of the week was a public screening short films made.

I’m also happy to have been accepted to present a paper at the Asia Pacific Autism Conference in Perth. Along with a colleague I will present the findings from a trial of the use of Acceptance and Commitment Therapy with adults on the autism spectrum.

A wanted to write this blog to also capture some thoughts I had after attending a two-day workshop.

Last week I had the opportunity to attend ‘delve’ a two-day experiential workshop for disabled artists.  Artists were able to work with professionals in either scriptwriting or new media. Robust discussions were had regarding identifying or not identifying as a disabled artist. So much of these discussions or arguments get caught up in the language itself and often people fail to realize that they become constrained by the language. So much of what we say occurs within context or culture. Much of our experiences as artists or people with disabilities are subjective.   So in some ways it is really difficult to compare our experiences with that of another artist who lives with a disability.    Some people say that art by its very nature, expression, is political.    Some people say that their art is not political, that their art is not about disability, and yet others say that their experiences, intrinsic to who they are, come through in the art anyway.  Language can be awkward and not allow us to express fully the things that we would like to express.   Art, however, can transcend the inadequacy of language.    Speaking to each other through our art, we can find ways to express the things we find it difficult to express when we use language alone. Disabled artist, artist with a disability, artist, human being– are all about, how at any given time, we experience the world, and how we choose to convey that experience.

When I was writing, in the scriptwriting workshop, one of things I did was to deny my own experiences. I said out loud to the group –I’m sick of it all being about me. I wanted to write about someone else’s experience. Saying this out loud became an interesting phenomenon. I am not sure that I was being entirely honest with myself, because I am looking for ways to tell my story through art but I guess I’m not looking to repeat some of the clichés, the endless clichés that I see around me. Apparently clichés sell, but I hardly think I’m in the game for selling. Selling out is another story.  Disabled artists, disabled writers, disabled activists, are often accused of selling out. Selling out to what, I am not sure. So how does one make art with integrity, this has to be one of the questions that get answered whether you identify as disabled artist or not.  Then sometimes you have to realize that when you make your art you have no control over what the audience thinks of it or even whether they think you are selling out.

This year I was once again given the opportunity to attend the Women’s Institute on Leadership and Disability (WILD) and again what an amazing life changing and affirming experience. Meeting old friends and making new friends and seeing the transformation of the lives of women with disabilities from all over the world. This year the Gender Disability and Development Institute was attended by 53 women from 42 countries and representatives from aid agencies and representatives of the US Government. Again there were critical conversations about how to include women with disabilities in development initiatives around the world. While I was in the USA I had a great opportunity to do an interview with the Autism Women’s Network, the transcript of which can be found here. This interview explores a range of things including WILD and perspectives on the autism spectrum.

Parallel to this there was another program being run by the Gender Consortium of Flinders University which invited regional Leadership fellows to Australia for three months for an intensive learning on gendering development in the Asian region. The culmination of this was a symposium Inclusion Matters: Gender and Disability in Local and Global Contexts and the great presentations can be found here. On the same weekend a group of women got together in solidarity and formed Women with Disabilities South Australia (WWDSA). This is an important local action as women with disabilities are just not being heard in consultations outside of disability specific ones and even the disability consultations are not tuned in to the voices of women. It is ironic that even though we have powerful representative in Kelly Vincent MLC women’s voices are still quiet and some of the most vulnerable voices are the quietest.

On the work front Company@ Autistic Theatre has produced a wonderful new show called “Solving the Cube” in conjunction with a local high school. This show is designed to tour to schools as an interactive piece of theatre for social change.

On a personal note I have been driving now for 5 months and have been gaining more and more confidence on the road. I am also honored to have be selected to represent Women with Disabilities Australia on the Board of the Australian Federation of Disability Organisations.

At the moment I am learning to drive. I am 36 years old and have Asperger syndrome and a movement disorder and I never saw myself driving. The lessons are not without their challenges. I have a good driving instructor he seems to be a natural teacher with intuition and most of the time he knows when to push and when to diffuse the situation with humor. My driving instructor talks a lot which can be distracting but he assures me that this is a strategy – he says when he gets quiet I will know I am nearly ready for the test. I am finding the multitasking a real challenge and have to consciously think through things when I do them (but this is the way with all new learning). I have never been able to to respond to left or right as I am not programed for it!! I have to really think about it. I can feel my confidence slowly building and I have caught myself enjoying driving occasionally- but the urge to cut and run from the whole process is still there .  It is the anxiety that is my biggest enemy – the hyper-vigilance has me jumping at normal events and second guessing my moves. The instructor says I have a ‘driving face’ which is a tense one. My skill levels are good – my fear is getting in the way. This is the story of my life – fear getting the way – complex and insidious. I am however determined to overcome that fear and experience the freedom of driving.

I can empathise with Daniel in this article by the ABC. The driving program that Daniel is involved in offers people like us a opportunity to learn that is tailored to our needs and it would be great if it could be replicated across the country.

The NAS in the UK has their own advice about driving. I am interested in this BBC Doco coming soon.

I have just discovered the latest Disability Studies Quarterly and I’m overjoyed! I feel like ‘autism’ is coming of age within disability.  It is fitting that there are articles by both Jim Sinclair and Ari Ne’eman. Dare I say Father of the movement and one of its most prominent sons. I have a feeling that a lot of care an attention has gone into the all of the sections, the peer reviewed, the cultural commentary, the roundtables and the smaller offerings – creative works and book and film reviews. Tito Rajarshi Mukhopadhyay and his exquisite metaphor and highly appreciable humor resonate with me. I am yet to read all of the work and I remain excited at the possibility of doing so and savoring the offerings as some are clearly such a departure from the medicalised research literature I am required to read as part of my profession. As an an Autistic person who is a Disability Studies graduate I feel this long overdue treatment of autism will finally allow further focus on discourse that is not routed in the medical paradigm or the battle seat of the behavioural science, pharmaco science or quackery realms.

I am not going to be one of those who hangs on to the Asperger label as I have always embraced the concept of autism and have in fact chosen to call myself Autistic in some realms for political purposes. Autistic is controversial as it flies in the face of person first language. I tend to back away from the diminutive terms such as ‘Aspie’ or ‘autie’ as I feel they are a trivialisation of a complex human state of being and interacting.

Much of our disability as with any disability lies within society’s attitudes toward us and it is not surprising that many people on the autism spectrum internalise these attitudes and develop a spectrum of self loathing that reflects society’s stigmatising stereotypes.

Identities also develop within a movement of resistance to those stereotypes – a point of difference is a point of resistance – Asperger’s has become one such point in a relatively short space of time. There is in fact no reason as to why people cant identify with Asperger’s definition of autism beyond the the time it is officially subsumed.

The danger though is that we risk further fracturing of a community that is already difficult to organise. People with ASD are excellent at excelling in solitary pursuit of ideals but bring us all together and we fumble about – in my experience. I have a very strong sense of the autism community but feel we do rightly resist being organised and homogenised which is why it is hard to have our voices heard and why we are often overwhelmed by the voices of others.

At other times the business of living day to day just takes over. For example I am 36 and I am just learning to drive so I have to decide what is more important – spending hours debating the DSM 5 or clocking up hours on the road so I can reach another level of independence. I did my first night drive tonight before I sat down and wrote this. So you see I am driven to do both – I can’t decide, I can’t prioritise – or maybe its just that some things are equally important. I want my independence but I also want every other person on the autism spectrum to have a chance to meet their goals too.

I have been thinking about the recent controversy regarding the DSM 5 and the choice to propose a move away from Asperger syndrome/disorder. I can’t help but think about what Asperger himself may think and feel it is important to visit his work and his intent when describing the condition he observed.

In 1944 Hans Asperger described people with what he termed “Autistic Psychopathy” – a personality disorder relating to ‘self’. When he was doing so I seriously doubt he would have thought that he would have ‘syndrome’ named after him. He clearly saw qualities that he deemed to be ‘autistic’, similar qualities that were described by Leo Kanner around the same time.

Asperger himself pays homage to Eugen Bleuler for the term autism, first used to described patients with Schizophrenia:

“The name ‘autism,’ coined by Bleuler, is undoubtedly one of the great linguistic and conceptual creations in medical nomenclature,” (Asperger,1944)

Asperger attempted to differentiate out people with ‘autism’ who were not psychotic. Kanner also borrowed the term autism from Bleuler and redefined the concept of ‘withdrawal’ away from Schizophrenia. Both Kanner and Asperger were describing similar populations borrowing Bleuer’s word autism and at the same time redefining that word so that it came to represent the population we know today.

It seems Asperger deliberately chose the word autism for what it represented then, as linguistically it may have been the best starting point for a description of the population he was wishing to highlight.

Beginning in 1981 Lorna Wing popularised the term Asperger syndrome.  Having popularised the term it has been reported that she has since expressed her regret at doing so. Asperger didn’t live to see ‘his’ syndrome enter the DSM in 1994 – he died in 1980.

Hans Asperger’s work has undoubtedly had an impact on the way we view autism and has resulted in the expansion of the concept of autism.  But he was and we are talking about autism.

Convention on the Rights of Persons with Disabilities – NGO Shadow Report

Leading disability organisations have partnered to form a project group which is compiling a Shadow Report on Australia’s implementation of the Convention on the Rights of Persons with Disabilities (CRPD).

The overall aim of the Shadow Report is to make recommendations to the United Nations Committee on the Rights of Persons with Disabilities. These recommendations will provide the basis for the United Nations recommendations to the Australian Government regarding Australia’s implementation of the Articles of the Convention. The main focus of the Shadow Report will be reporting the extent to which Australia has implemented its obligations under the CRPD and to provide recommendations for future action by the Australian Government.

The project group gratefully acknowledges the pro bono support DLA Phillips Fox in providing a team to draft the report and assist with facilitating consultations in each State and Territory in Australia. The project group will be inviting disability advocacy, representative, and legal organizations to provide information about the lived experience of their members, clients and constituents with disability. These stories will identify the degree to which persons with disabilities’ human rights are protected, respected and fulfilled.

The release of the Shadow Report outlining the information collated, including recommendations, is expected prior to the Federal Government submitting its Progress Report to the United Nations in August 2010.

Please complete survey at;

http://www.disabilityrightsnow.org.au/node/15

I began to get tired toward the end of this year and was wondering how I would keep going under the pressure of everyday life. My mind is such that I am driven to do and to achieve not only for myself but on behalf of others. I have had time to rest and reflect and realise that it will always be my lot to be the way I am!!

2009 has seen many changes and machinations in the autism self-advocacy world and what I am seeing is a third-wave of advocates who a striving for a more rights based recognition of autism and autistic people. I am tired and as much as I’ll keep soldiering on, I am grateful for the new blood even if there is a bull at a gate mentality at times.

I remember being a younger activist  – not just taking a stand on autism and disability but on refugee issues, global economics, war, unemployment, youth issues, gay rights and more. I approached every issue with fervour and could be found at the front of picket lines and travelling from state to state to set up camp on a new issue. I was an arts student with time to spend on developing concepts, campaigns and time to dream about a better world. I was not only dreaming I was taking action and I believed wholeheartedly that every little bit counted. I think that some of the more seasoned activists around me would have looked at me and my fellow newbies with a mixture of amusement and knowing because they had been there done that – so to speak.

Sometimes now when I read about the actions of the new wave of self-advocates and activists in autism I have a mixture of the feelings that I suppose those elders had when I was younger!

There are some of us who have been there and done that in a lot of ways and yet there is still so much to be done. We do have a legacy which is a luxury and not a luxury to be taken for granted.

Now is a good time to reflect on some of that legacy and the things that inspire me!! (some links are to old sites)

Autism Network International Founders (1992) Jim Sinclair , Donna Williams and Kathy Lissner Grant. History here IMPORTANT READING

Jim Sinclair’s Don’t Mourn for Us

Martijn Dekker and InLv and IRC channel #asperger

Tony Langdon

Oops… Wrong Planet Syndrome (1995 – 2005) Archives here

Aspergia.com (no content available – you had to be there!)

These are a snipet of my introduction to the autism world many years ago when resources seemed sparse. Today there  is a veritible flood of information, options, opinions, resources, forums, chat rooms and the like. There are many activists and advocates awakening to the cause and looking toward the horizon with a sense of importance, boundless energy to give and rights to fight for.

I am a little bit tired but not nearly as tired as some who went before me – all that I wish for is that we honour the legacy of a movement. Spend some time looking back before you run foward.