Introduction

This paper will explore two issues in disability that of cure and that of acceptance. Particular attention will be paid to the area of Neurodiversity, that is the idea that people diagnosed with autism and related conditions form a neurodiverse population that forms part of the human spectrum of diversity.

The idea of a cure for permanent impairing conditions has been a principal focus of medicine for centuries and for decades many public resources have been injected into finding cures for specific conditions. Shakespeare (2006) proposes that the representation of people with impairment as ‘needing a cure’ is a powerful mechanism for attracting funding to charities and from government. On the other hand some groups of people with impairments (mostly excluding those with life-threatening and degenerative conditions) are willing to forego the idea of a cure in favour of personal and public acceptance of their difference and diversity (Baker, 2011; Shakespeare, 2006). One such group is the Neurodiverse – encapsulating people with autism.

Autism is a condition that is neurobiological in origin and manifests itself in a spectrum of disorders as described by modern psychiatry. These disorders include autistic disorder, Asperger disorder and Pervasive Developmental Disorder Not Otherwise Specified (APA, 1994). Each of these disorders is characterised to an extent by communication difficulties, social deficits, and restricted and repetitive behaviours. There are a number of documented treatments for autism including behavioural therapies, psychological therapies, pharmacological therapies and biomedical therapies, all with varying degrees of success and validity (Herbert, Sharp, Gaudiano, 2002). It must be noted that there is at present no scientifically validated cure for autism (Autism Science Foundation, 2012).

Neurodiversity and Acceptance

The Neurodiversity Movement provides a challenge to modern conceptualisations of autism and puts forward the idea that autism is naturally occurring, not a disease, and should not be the subject of medicalisation and subsequent treatment or cure (Ortega, 2009; McGann & Hutson, 2011). The Neurodiversity Movement relies on strategic essentialism (Garland-Thomson, 1997) in the formation of a minority group with a particular set of characteristics. To this end the Autistic Self Advocacy Network (ASAN) (2012), the largest proponent and organizer of the Neurodiversity Movement, refers to Autistic Community and Autistic Identity as signifiers of this minority group. Bagatell (2010) observes that the discourse of this autistic community provides an interpretation of what it is to be autistic that is in direct contrast to the descriptions in the biomedical paradigm. Her research suggests that people within the neurodiversity movement want many behavioural aspects of autism to be accepted as difference and that autism be treated as a fundamental part of who they are, feeling that without autism they would not be the same person.

Baker (2011) highlights a continuum of understandings of disability from essentialist through to constructivist, the former locating disability within the person and the latter locating disability in the social and political infrastructures surrounding the person with impairment. This continuum of understanding disability has some correlations with the understanding of the perspectives along the continuum between cure and acceptance, however, facets of essentialism and constructivism cut across this continuum. As highlighted previously The Neurodiversity Movement relies on strategic essentialism but it also draws heavily on constructivism, placing the disability associated with autism within the realms of social construction, and arguing that much of the disability could be ameliorated if society were to accommodate and accept neurodiverse individuals, making difference relative. (Garland-Thomson, 1997; Bound, 2008; Baker, 2011). Baker (2011) argues that those engaged in neurodiversty activism consciously employ the theories, language and tactics of previous proponents of diversity in the twentieth century. The wider disability rights movement, the gay rights movement, black power and feminism have all influenced neurodiversity activism.

Within the Neurodiversity Movement there is a specific focus on acceptance of diversity and celebration of difference (Baker, 2011; Robertson, 2010). ASAN (2012) argue that:

“Acceptance of difference is essential to understanding, accepting, and benefiting from the contributions of everyone in our society, thus allowing all people to live up to their potential.” (n.p.)

Estee Klar, (parent of a child with autism), founded The Autism Acceptance Project, which has generated such projects as Autism Acceptance Day, Autism Acceptance Month and Autistic Pride Day. Klar delivered a series of lectures entitled The Joy of Autism: Redefining Ability And Quality of Life, which have been acknowledged both by ASAN and the United Nations as being definitive of autism acceptance (ASAN, 2012). Through her blog Klar (2012) explores the challenges of raising a son in the face of society’s ableism, believing that teaching the world to accept her son’s autism will increase his quality of life.

At an international level The United Nations, through World Autism Awareness Day, promotes acceptance of people with autism and their families through upholding their rights. According to the secretary general of the United Nations (2012) World Autism Awareness Day “should spur global action to combat the “unacceptable” discrimination, abuse and isolation that people with the disorder and their loved ones face”….. and…. “people with autism are equal citizens who should enjoy all human rights and fundamental freedoms.”

This came after submissions to the United Nations such as the one from Nelson (2004):
“We mean for this statement to begin a process of official recognition by the United Nations that we are indeed a minority group, and worthy of protection from discrimination, inhumane treatment, and that our differences are valid in their own right and not something that needs to be cured. (Nelson 2004, cited in Davidson, 2008: pp799)

Critics of the Neurodiversity Movement say that this approach does not accept that some people may desire a cure for themselves or their children who are affected by neurological conditions. Initiatives, such as Defeat Autism Now, have sprung up around the notion of cure and recovering children from autism (Rocque, 2010).

The Cure

Contextualised by the essentialist medical model of disability the reflexive desire for a cure is often the first line of response for those confronting a diagnosis of autism (Baker, 2011). This is hardly surprising as within western society there is a message, both overt and covert, that anything outside of normal is unacceptable and normalcy is habitually expected. (Posavad, 2009; Baker, 2011) From Posavad’s (2009) study of the lived experience of mothers of children with autism highlights the feelings of parents:
“Loss of control seems obvious out of sadness for what her child is and might never become. Pressure to ‘help’ her child creates feelings of frustration and disappointment”(pp. 52)

In the context of the stress of parenting a child with autism many families seek or at least hope for a cure for autism. Many parents see their child’s autism as something that masks the real child and prevents them from living a productive life, furthermore, causing the children emotional and physical suffering (Bagatell, 2010)

In America, the National Alliance for Autism Research (NAAR), founded in 1994, and the Cure Autism Now Foundation (CAN) were the comtemporary forerunners in the search for a cure in America and have since merged into the organization Autism Speaks (Ortega, 2009). Autism Speaks, heavily situated within the medical model of disability, has clinical programs such as the Autism Treatment Network, The Autism Genetic Resource Exchange, The Autism Tissue Program and a clinical trials network. In Australia the Mindd Foundation has been set up in order to offer treatments that recover children from autism (Mindd, 2012) and with the proliferation of information via the internet many organizations such as Autism Speaks have global reach into Australia.

These more modern organizations follow in the wake of predecessors such as Bruno Bettelheim (1967) who in the 1960’s claimed to have found the cause of autism; cold and detached mothers who caused a defensive reaction in their children. Bettelheim claimed that the cure for these children was a ‘parentectomy’ – extended periods of time without their parents, he also claimed an 85 percent cure rate at his school (Herbert, Sharp, Gaudiano, 2002). Bettelheim was later found to be a ‘self styled’ child specialist with no formal training in psychoanalysis, his theories were subsequently discredited (Grinker, 2007).

According to Shakespeare (2006) from a critical realist perspective we cannot discount the role of biomedical and psychological intervention for people with disabilities. Shakespeare highlights autism as a ‘difficult case’ as within the spectrum of autism there is a hierarchy of impairment from quite functional, yet different, people to people with significant intellectual and speech and language impairments. Shakespeare feels that the goal of promoting acceptance should not distract from mitigating the effects of impairment. However he comments that denigrating or misrepresenting the lives of people with disabilities, in the search for cures, cannot be justified.

The Tensions

Scientific research agendas, fuelled by the hopes of parents for a cure, have propelled autism into the media spotlight. Celebrities have flocked to campaigns to find a cure for autism with Oprah Winfrey hosting television programs, ex model and actress Jenny McCarthy, parent of a child with autism, and her then partner Jim Carey walking for a cure.

These celebrities begin to blur the lines between science and subjectivity, particularly McCarthy who claims her son has been cured of autism, and has written two books on healing autism and has founded an organisation named ‘Generation Rescue’. McCarthy relies on anecdotal evidence to support her work claiming her son is her science (Belkin, 2010). McCarthy (cited in Roque, 2010) fuels the negative emotions associated with autism to mobilize support for a cure:
“Autism, as I see it, steals the soul from a child; then, if allowed, it relentlessly sucks life’s marrow out of the family members, one by one” (n.p.)

Actor Lou Diamond Phillips also led a parade of children, ‘recovered’ from autism, during an opening event for an autism treatment organisation. Citing the work of Garland-Thomson, Roque (2010) argues that this is an example of the ‘freak discourse’ of the 19th century alive and well today. The parade, he argues, is an example of the reversal of the freak, a parade of reclaimed or recovered normalcy aimed at enticing the audience to purchase the treatment products.

In Australia the organisation Autism Awareness (2008) ran a community service announcement that claims that autism is “stealing the minds and personalities of the generation of Australian children” and further claims “30,000 Aussie kids have been kidnapped by autism”. This community service announcement is recorded by a number of prominent Australian actors and TV personalities.

A case that further demonstrates misrepresentation and the tension between those seeking a cure, and those seeking acceptance, is that of the “Ransom Notes”. Kras (2010) and Bagatell (2010) outline the case in which the New York University’s Child Studies Centre placed ‘medical advertisements’ highlighting the psychiatric disorders they treat. The advertisment for autism read as follows:

Autism
We have your son.
We will make sure he will
not be able to care for
himself or interact socially
as long as he lives.
This is only the beginning.

ASAN organised a grass-roots internet protest including an online petition and letter writing initiative against this campaign. Due to overwhelming pressure and objection from the autism and disability communities, on the grounds that the campaign further stigmatized people with disabilities, the ads were pulled by the agency. In his critique of the Ransom notes campaign Kras (2010) says the following:

“These ads depicted childhood psychiatric conditions as problems that need to be fixed and children with these conditions as abnormal outcasts from society. Their — or, rather, their parents’ — -only hope is to pay someone money to get them liberated from their disorder and returned to normal society. (n.p.)

Here the medical model of disability is confronted with the social constructivist model of disability with the activists using the latter to claim that the attitudes promoted in the ads further disable the individual diagnosed with the condition.

It is interesting to note that people may move along the continuum of attitudes toward cure and acceptance, dependent on their individual circumstances, environmental factors, and the social and political climate. Many parents like Estee Klar stand for the acceptance of their children, but started their journeys with autism, by looking for treatments and possible cures, and to this day use the treatments they have found effective. Even among people with autism themselves there are a variety of attitudes toward cure. Sue Rubin, a woman with autism, (cited in Ortega, 2009) says she belongs to the ‘cure group’, and thinks a cure for autism would be wonderful. Reflecting another point on the continuum, John Elder Robison (2009), a man also on the autism spectrum, believes that a cure should not be a focus but rather there should be a focus on treating the parts of autism that cause the most distress. And Ari Ne’eman from ASAN (2012) states ‘for many of us, the prospect of cure and normalization denies essential aspects of our identity.” (n.p.) This may seem as though he is rejecting any treatment or intervention, but that is far from the case, as he promotes the use of supports that enable the individual with autism to function more effectively in the world, without the need to remove their autism (ASAN, 2012).

Baker (2011) asserts that for society to respond effectively to these issues, through policy innovation, it must embrace multiple understandings of disability including responses to the problem such as cure and acceptance, and despite the obvious tension between the responses, there is value in discontent, as without such interest from passionate proponents issues fall away from public and systemic agendas.

Conclusion

Neurodiversity is a newer concept within disability studies and provides a counterpoint to the medical model of disability. Neurodiversity uses both strategic essentialism and social constructivism to argue for the acceptance of people with autism. Many people with autism have their condition framed by the medical model, which asserts that, the desirable state of being is ‘normal’ functioning of the physical and psychological body, and that a return to this state, via treatment and ultimately cure, is desirable. There are many tensions between these two agendas that have been played out publically with families, organisations and celebrities promoting the elusive cure, and neurodiversty activists promoting acceptance, on the grounds that difference from the norm is a part of the human spectrum. Attitudes toward cure and acceptance are not fixed and cannot be ascribed as belonging to one group or another. What we can do is aim to understand how strong public discourse on these matters fuels policy agendas.

References

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Autistic Self Advocacy Network. (2012). Position statements.
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Bagatell, N. (2010). From Cure to Community : Transforming Notions of Autism Historical Trends Influencing the Emergence of an Autism Community. Ethos: Journal of the Society for Psychological Anthropology, 38(1), 33-55.

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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