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.

Since time immemorial, people with disabilities, whether mental or physical, have been the subject of scorn, ridicule, fear, demonization, intolerance, ostracism, social and economic marginalization, and, all too often, outright indifference – These practices have been universal and no nation on earth is guilt free (Beverly & Alvarez, 2003).

The current campaign being run by Autism Speaks perpetuates these age old practices on every level and is a step back into the veritable dark ages of the experience of disability (bearing in mind disabled people have only just come into the light). In a turn out for the books even the USA, Autism Speaks’ own home country has recently signed The UN Convention on the Rights of People with Disabilities, which by the way the ‘I am Autism’ video directly contravenes.

See for example Article 7.3:
States Parties shall ensure that children with disabilities have the right to express their views freely on all matters affecting them, their views being given due weight in accordance with their age and maturity, on an equal basis with other children, and to be provided with disability and age-appropriate assistance to realize that right.

In ‘developed’ countries the disability rights movement has history spaning over 50 years, a movement that has fought for the rights of people with disabilities, having them enshrined in law, further, demanding social, cultural and economic changes that enable full participation in society. Implicit in the actions of this rights movement is the fundamental idea that people with disabilities are in fact equal as human beings not, lesser beings, animal- like, feeble, immoral, defective or subjects of demonic possession (some of the preferred terms of the 19th and early 20th centuries). Autism Speaks members seem to have been sleeping whilst the enlightenment occurred because they don’t seem to understand the fundamental rights of all people to live is a society free from discrimination and in particular hate speech. Replace the word autism in the video ‘I am Autism’ with any other characteristic or condition experienced by the human race and there would be outrage. Disabled people feel that often their experience is last frontier in terms of discrimination; if this is the case then autism remains a further frontier within the last frontier.

Some time ago I was exploring the idea of Radical Cheerleading – which is cheerleading with an activist edge. Now cheerleading is not something that I ever aspired to as a young person but I like the activist part and there is still part of me that would love to stick it to the girls that were the cheerleading type as they often made my life miserable!

Radical Cheerleading is out there, feminist, activist and well umm radical with plenty of causes, actions, ‘riots’ and the customary zines documenting it all. In these modern times Radical Cheerleading has dedicated Facebook pages and groups and websites so you can google if you like. You might say hey whoa these chicks are too way out there lefty femo whatsits for me or you may just love it. I took a shine to the idea because it is about taking something iconic with a specific cultural vibe and currency and turning it on its head.

So Asperger Women’s Radical Cheerleading anyone?

A Cheer I wrote with some Asperger Teens!
Aspergrrrls

We’re here, we’re girls, and we’re different
If you don’t like that then it’s time you went!
We love our bodies and we love our minds
Got no time for bullies ‘cos they’re just unkind
We’re here today cos it makes no sense
for people to see us and take offence.
So hear our stories- what we have to say
Di-vers-it-y is the only way!
We’re here, we’re girls, and we’re different!

Autism and Asperger syndrome are developmental disabilities often referred to as Autism Spectrum Disorders (ASD). For many self advocates on the spectrum the term ‘Autistic’ is the term chosen for self reference. Autism is historically characterised as a severe disability that has attracted many stereotypes and misunderstandings. There are said to be 1/160 Australians with an ASD equating to an enormous population with a diverse range of difficulties and needs and equally as diverse range of skills, talents and accomplishments. Much national media attention and political attention has been payed to autism of late, however there seems to be a distinct lack of Autistic voice amongst the national conversation occurring. With rhetoric thrown around such as epidemic, tragedy, emergency, criminals, burdens, problems… how does an Autistic voice emerge?
For an Autistic voice to emerge the first thing that an Autistic person must do is recover, not from their autism but from the disabling environment they are expected to develop in. They then must set about in the task of educating themselves in the social ways of the world.
The Autistic person works from a different platform that does not necessarily prioritise social information. To operate in the social world requires extensive study of human beings and human interactions and the application of intricate sets of maps a rules derived from that study. The extent of understanding derived from this intensive study can well surpass the casual observations of others. Another important quality in developing a voice is resilience. Opportunities for the Autistic person to practice resilience are abundant, from early days in the school yard to the halls of larger institutions and the complexity of adult life. Over 90% of people with an ASD experience bullying within their lifetime and it is only through sheer resilience that they survive. Although socially impaired the Autistic person may serve as a barometer for social change as they quite often stand off to one side observing the main event and reacting noticeably to even the most subtle change; like the frog is to the environment, the Autistic person is to society.
Verbal communication for Autistic people can range from being not present to being superior on standardised tests, none the less every Autistic person has something to say and as a leader I am extremely cognisant of this fact. To be a leader requires a certain amount of social sophistication, enigma and a lot of hard work, it has been argued that Autistic people are incapable of all of these things. As an Autistic person and a leader I would argue that some of us are in a unique position to become leaders and can offer a unique set of skills to any leadership forum. I myself have served on nine Boards and Steering Committees holding positions such as Consumer Representative, Vice Chairperson, Chairperson and Convener. I currently Co-Convene the Autistic Self Advocacy Network (ASAN) of Australia an affiliate of ASAN in the United States.
I am also aware that leaders have the responsibility to foster young leaders. It is the aim of ASAN to offer leadership opportunities to all Autistic people who wish to explore them, to involve Autistic people in self advocacy at a personal, local and national level.
I recently had the opportunity to attend the 4th International Women’s Institute on Leadership and Disability hosted by Mobility International in Oregon, USA. I was one of 25 women with a disability to attend and the only Autistic woman. This cross disability program was an invaluable leadership experience that also allowed me to asses the global position of Autistic people in leadership. I can point to a handful of leaders around the world, some pioneers who have been on the scene for years and some new faces, but as a movement we are young and emerging.
We have a lot to learn and could do with a little support but most importantly we want to be taken seriously at a national level. We are still continuously marginalised in conversations about us. As the old adage goes ‘Nothing about us without us’. We are here; we do have many voices and strong emerging leaders.