Archive for the ‘Autism’ Category

World Autism Awareness Day and why its ok to let your activism hang out.

Saturday, April 5th, 2014

I want to talk about the microagressions occurring on and around WAAD and why as activists we have to persist even when there are those who want everything to be bright and shiny; because when people want everything to seem “positive” or for us to “move forward” what they are really saying is “I invalidate you and your experience”, “I don’t want your pain in my face”, “I erase your contribution from the story” or “my privileged experience is the only experience”

“Simply stated, microaggressions are brief exchanges that send denigrating messages to marginalised groups. Any group can be guilty of delivering microaggressions, but the most painful and harmful ones are likely to occur between those who hold power and those who are disempowered.” (Sue, 2007)

“In many cases, these hidden messages may invalidate the group identity or experiential reality of target persons, demean them on a personal or group level, communicate they are lesser human beings, suggest they do not belong with the majority group, threaten and intimidate, or relegate them to inferior status and treatment.” (Sue, 2010)

Some Microagressions seen or reported:

“What’s the difference – its all for a good cause right?”

“People will get confused if we have more than one message”

“I’m saying that the ugly bitterness that i hav[e] seen on social media does nothing for autism awareness or understanding.”

“well you look normal to me”

“You seem to act normal… you don’t act weird or anything… you look healthy… you seem smart.”

“Instead of spending your time trolling all these posting and spewing your hate and anger, start your own page and spew it there. Just because you oppose Autism Speaks doesn’t give you the right to ruin it for others.”

“Oh yes, but you’re so different to most people on the spectrum”.

“Why do you have to make such a big deal about it?”

“Just don’t make it too ‘political’ ok”

“Oh I heard somewhere that we’re all ‘on the spectrum’.”

high functioning, high functioning, high functioning

Tell me about some of the microaggressions you have seen or heard…

 

Cure vs Acceptance in the context of Neurodiversity – Autistics Speaking

Friday, November 2nd, 2012

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

American Psychiatric Association. (1994). Diagnostic and Statistical Manual of
Mental Disorders. (4th ed.). Washington, DC: American Psychiatric Association.

Autism Awareness. (2008). Autism awareness ad.
http://www.youtube.com/watch?feature=player_embedded&v=_7IFs3cIRak Accessed 7/6/12

Autistic Self Advocacy Network. (2012). Autism acceptance events and their history.
http://autisticadvocacy.org/2012/03/autism-acceptance-events-and-their-history/ Accessed 7/6/12

Autistic Self Advocacy Network. (2012). Position statements.
http://autisticadvocacy.org/policy-advocacy/position-statements Accessed 7/6/12

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.

Baker, D. L. The politics of neurodiversity: Why public policy matters. Boulder:
Reinner

Belkin, L. (2010) The false profits of autism. New York Times Parenting Blog
http://parenting.blogs.nytimes.com/2010/02/02/the-false-prophets-of-autism/ Accessed 6/6/2012

Bettelheim, B. (1967). The empty fortress. New York: The Free Press

Bound, K. (2008). ‘Are you sure, sweetheart, that you want to be well?’: An
exploration of the neurodiversity movement. Radical Psychology: A Journal of Psychology, Politics & Radicalism, 7.

Davidson, J. (2008). Autistic culture online: virtual communication and cultural expression on the spectrum. Social & Cultural Geography, 9(7), 791-806.

Garland-Thomson, R. (1997). Extraordinary bodies: Figuring physical disability in American culture and literature. New York: Columbia University Press

Grinker, R. R. (2007) Unstrange minds: Remapping the world of autism. New York: Basic Books.

Herbert, J. D., Sharp, I. R., & Gaudiano, B. A. (2002). Separating fact from fiction in the aetiology and treatment of autism: A scientific review of the evidence. The Scientific Review of Mental Health Practice, 1(1).

Klar, E. The joy of autism. http://www.esteeklar.com/ Accessed 7/6/2012

Kras J. F. (2010) The “Ransom Notes” affair: When the neurodiversity movement
came of age. Disability Studies Quarterly, 30(1)

McGann. P. J. & Hutson, D.J. (2011). Sociology of Diagnosis. Bingley: Emerald
Group Publishing Ltd.

Mindd Institute. (2012). Mindd Overview. http://mindd.org/s/archives.php/107- Disorders.html#autism Accessed 7/6/12

Ortega, F. (2009). The Cerebral Subject and the Challenge of Neurodiversity. BioSocieties, 4(4), 425-445.

Posavad, J. (2009). Acknowledging Mother’s Lived Experience of Raising a Child with Autism: A Phenomenological Inquiry. Unpublished Thesis. Faculty of Child and Youth Studies, Brock University: Ontario

Robertson, S. M. (2010). Neurodiversity, quality of life, and autistic adults: shifting
research and professional focuses onto real-life challenges. Disability Studies Quarterly, 30(1)

Robison, J. E. (2009). The “cure” for autism, and the fight over it. Psychology Today.
http://www.psychologytoday.com/blog/my-life-aspergers/200910/the-cure-autism-and-the-fight-over-it Accessed 7/6/12

Rocque, B. (2010). Science fictions: Figuring autism as threat and mystery in medico-
therapeutic literature. Disability Studies Quarterly, 30(1)

Shakespeare T. (2006). Disability rights and wrongs. London: Routledge

Tired Yet?

Saturday, December 26th, 2009

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.

Autism Speaks ‘I am Autism’: A short response.

Sunday, September 27th, 2009

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.

Emergence: Leadership and the Autism Spectrum

Wednesday, August 5th, 2009

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.

The History of ASAN AU – A Paper

Sunday, July 26th, 2009

The development of an online network of self advocates: An application of technology to overcome social barriers inherent in a disability.

Introduction

The Autistic Self Advocacy Network of Australia had its beginnings in technology in the late 1990’s when adults diagnosed with an Autism Spectrum Disorder (ASD) first began to have an online presence in Australia. Adults began building their own websites and started reaching out through online forums and web based ‘chat’ applications such as Internet Relay Chat (IRC). Since that time a network of support has developed through the use of technology that enables otherwise socially isolated adults to interact, share thoughts and feelings, troubleshoot issues and provide support to younger people with an ASD. Interviews with adults with ASD who are part of this network have been conducted and this paper will explore their experiences with the technology of the internet and reflect upon relevant literature (pseudonyms are used where requested). The aim is to give the audience an insight into the lived experience of an evolution of the use of the Internet by people with ASD and explore the impact that this technology has had and is still having on their lives. Ultimately what will be demonstrated is the organic process of the development of a network of people with a disability that was and is made possible by the technology of the internet.

The Autism Spectrum

Autism Spectrum Disorders, Asperger syndrome and Autistic Disorder are Pervasive Developmental Disorders characterized by a triad of impairments in the areas of communication, socialization and imagination (APA, 1994). The social and communication challenges faced by a person with ASD include an inability to use language as a communication tool for effective social interaction and a lack of understanding of the rules that govern verbal and non-verbal social interaction, this may typically lead to isolation from peers, failure to develop friendships and close relationships, and an increased likelihood of becoming the victims of bullying and harassment (Attwood, 2007). Davidson (2007) asserts that perceptual differences associated with autism hinder typical communication with the result that the words and actions of others can be unpredictable, and indecipherable or even scary for those on the spectrum.

Many first person accounts of ASD (Williams, 1996; Lawson, Hadcroft, 2005; Holliday- Willey, 1999) speak to this social isolation and bewilderment in the face of social interaction that seems for the most part to come quite easily to the typical population. First person writing also relays blow by blow accounts of the bullying that seems to befall many people with ASD:

“During my time in 2W1 I continued to feel vulnerable and anxious, like being rolled up inside a giant carpet and left to find my own way out. Whenever I panicked or froze, the bullies were always ready to set upon me. In the play court, if I hadn’t managed to hook up with Ian, the vultures would descend upon me.” (Hadcroft, 2005, p. 69)

Much of the treatment for ASD is aimed at addressing the core deficits and teaching communication and social relatedness skills (Attwood, 2007; Smith Myles & Simpson, 2001 ; Gray, 2000). However for many with an ASD learning skills that enable them to operate in a majority culture (a social one) still leaves them in the position of being a minority within that majority.

Technology – Overcoming Barriers and Accessing Social and Cultural Spaces

In an attempt to address this minority status many people with ASD who can access computer and internet technology have turned to this medium to have a set of social and cultural needs met. In discussing intervention for adults with ASD a leading psychologist in the field suggests:

“The adult [with ASD] may benefit from joining an Internet support group or chat room. This can provide a sense of belonging to a distinct and valued culture and an opportunity to consult members of the culture for advice.” (Attwood, 2006, p. 49)

As highlighted by McLimens and Gordon (2009), the creator of the World Wide Web (WWW), Tim Berners-Lee, considered his invention to be a social one rather than a technical one. Examples of Berners-Lee’s social invention are becoming more apparent now with the advent of Web 2.0 technology that allows user content to be shared more readily via the WWW with sites such as MySpace, Facebook and user generated weblogs or ‘blogs’ becoming prolific.

However back at the turn of the century Web 2.0 applications were not available and users had to be quite technologically advanced to post and manage web content and to download applications that would allow them to ‘chat’ via the WWW. None the less people with ASD began to emerge onto the Internet and started to make connections to information and to each other. One of the first Australian sites authored by a man with ASD emerged in the mid 1990’s. Others who had similar experiences were attracted to this man and began communicating with him via email discussion lists.

Tony the man that developed one of the first ‘first person’ ASD site in Australia was diagnosed with Asperger syndrome as an adult and found few resources that met his needs.

“The biggest benefit [of the online support network] is the knowledge that “you are not alone”, which was one benefit I didn’t really have. That in itself was one reason I started writing on the web in 1995. Support for me has been somewhat of a two way street, giving as much as getting.” (T. Langdon, personal communication, June 12, 2009).

For Tony online support has been a continual source of interaction with other people on the autism spectrum and a way of developing and maintaining a circle of friends.

Finn (1999) highlighted many reasons as to why online groups were emerging as an important development in self-help for people with disabilities. He suggested that these groups would eliminate a number of barriers including time and distance, oral communication issues, the challenges of face-to-face interaction, and interpersonal difficulties and offer some anonymity to users who may not wish to disclose their identity. This would seem to offer people with ASD who have social and communication barriers a chance at a forum in which some of these barriers are removed.

Cameron (‘Cameron’, personal communication, June 12, 2009) a young man who is now 22 years old started using online support groups in 1997 when he was just 11 years of age. His mother encouraged him to seek support after he was diagnosed with Asperger syndrome. For children with disabilities who often have social skill deficits and are prone to social rejection, the virtual environment may offer a social context that does not accentuate their deficits, and provides a place where they are more likely to experience positive interactions with their peers. (Raskind, Margalit & Higgins, 2006) For Cameron this has certainly been the case. He first started using a supervised chat group called AS-Kids and his initial aim was to ‘find out info’ about autism and Asperger syndrome. Over time Cameron has joined online chat rooms using Internet Relay Chat accessed through a downloaded program installed on his computer. Cameron considers himself to have ‘grown up’ in these chat rooms and returns to the rooms on a daily basis to seek the support of his online friends and mentors. Cameron uses the chat room to talk about everyday issues and to share his interests with online friends. These online friendships have endured over time and are ones that Cameron and his mother consider to be pivotal in his development.

Merlin has been Cameron’s online friend and mentor for the past 11 years. Now aged in her fifties Merlin came to the internet looking for answers around the same time as Cameron. Merlin relays her initial experiences:

“When I realized that I may have Asperger Syndrome, I tried to get information from the local library. There were long waiting lists on the few books available, so I learned to use the internet by trial and many, many errors. I heard about AS in August, 1998 and was starting to explore the net a fortnight later. Mostly I went to personal pages and then found OzAutism [an email discussion list]. A few months later I started to chat.” (‘Merlin’, personal communication, June 12, 2009).

Merlin’s trial and error approach to internet meant that she had learnt a lot along the way and she soon found she was able seek and offer support and experience the benefits of growing friendships.

“I used to understand friendship as hard work. I now regard online friendships as fun and it is a constant pleasure to realize that there is a group of people who care about the good and bad things that happen to me. I also like knowing that sometimes I can help online friends in ways that I cannot help some of the people in my daily life because I do not really relate to the way they think and live.” (‘Merlin’, personal communication, June 12, 2009).

On recommending the internet as an option for adults with ASD looking for friendships Attwood (2007) reiterates much of what Finn (1999) put forward as rationale for people with disabilities adopting the internet as a social support tool. Attwood highlights the advantages of developing friendships over time without the distractions of extraneous social and sensory information. He also acknowledges that “genuine and long-lasting friendships can develop over the Internet based on shared experiences, interests and mutual support.”(Attwood, 2007, p. 87)
Sarah (pseudonym) a woman in her thirties with ASD, came to the internet in the year 2000 seeking support for social issues she was having. In the early 1990’s she was diagnosed with atypical autism but coming from a rural area had no access to support and intervention. Thinking that very few people shared her issues she began an internet search for ‘autism in Australia’ and found Tony’s site which lead her to contact him and to seek out others with a diagnosis. Sarah reports that she found a degree of social success online that she had never experienced ‘in real life’. She found that a lot of the social conventions required in face-to-face interactions could be bypassed on the internet and that people were more receptive to her ideas. This in turn served to build her confidence and sense of competence.

In discussing the social positioning of people on with disability Bowker and Tuffin (2007) state that online access offers alternative frameworks for positioning people with disabilities in the social world. They studied the dominant patterns in the textual outputs of people with disabilities online:
One dominant pattern, which was evident in the data, was the way people with disabilities were evaluated positively. This talk of positive subjectivity included the idea that many of the social and psychological barriers, which had formerly constrained independent demonstrations of ability, were eliminated online. Freed from such stigmatising negative judgements, online communication afforded people with disabilities a rare opportunity to exhibit their value (Bowker & Tuffin, 2007).

In the late 1990’s the web company Yahoo! developed its online groups application and specific Asperger and autism groups started to emerge. A number of Yahoo! based groups in Australia have played an important role in the development of the online ASD community. The pivotal role of Yahoo! Groups in the development of ASD identity has been acknowledged by Brownlow (2007) who used Yahoo! groups as a representative sample for her study of the online construction of the Autistic Individual. Groups discussing Autism spectrum Disorders and groups for individuals with ASD focussing on issues such as relationships, intimacy, sexuality, advocacy have attracted hundreds of members from around Australia and thousands of members worldwide. Tony, Merlin and Sarah have played substantial roles in bringing these groups into existence in Australia and maintaining them for almost ten years.
In 2005 Tony, Merlin and Sarah joined together and created an online discussion group aimed at combining their online efforts and advancing the issues of people with ASD who were using the internet. In the past four years they have continued to support each other and their community by taking action and creating national and international affiliations via the internet. Thus in due course the Autistic Self Advocacy Network of Australia evolved. Much of the work done by the original members parallels the work of many international advocates that pioneered the idea of an ‘autism culture’ online. With the advent of the internet, the major facilitator of communication for people with ASD, the evolution of a movement has occurred, a movement akin to the political movements of other minority groups (Davidson, 2007). The movement itself began with internet as a pivotal tool and its ongoing existence is facilitated by that tool, a tool that has been effective in removing social and communicative barriers for some individuals with severe impairments in these areas. Brownlow (2007) argues that the movement has also allowed people with ASD to construct an empowered identity which allows them to challenge expert views of people with autism and their abilities. As Merlin relates:

“My experience was that reading information about autism from professionals has often been very depressing. Many are very judgmental and present information from their observations, not our reality. The first time I felt any sense of hope for a better future was reading Tony Langdon’s site. It was a revelation to me that an Autistic could have a good life.” (‘Merlin’, personal communication, June 12, 2009).

Many individuals like Cameron described earlier continue use the internet as a daily tool for social interaction and it is for their benefit that individuals like Merlin, Tony and Sarah continue to advocate for the advancement of people with ASD whilst similarly benefitting from the support available online.

Conclusion

This paper has been a brief foray into the use of the internet as tool for overcoming the social and communication impairments posed by Autism Spectrum Disorder and demonstration of the lived evolution of a network enabled by the use of internet technology. The inventor of the World Wide Web Tim Berners-Lee intended it to be a social tool. There is little doubt that he recognised its potential but did he understand how liberating it may become for a group of people with social impairments. As demonstrated by the interviews and supporting literature the internet has enabled people with ASD to surpass barriers present in face-to-face communication and enabled them to find relationships that seem to be qualitatively different but equally as valuable as the relationships made by other individuals using face-to-face communication. These relationships have served to increase self-awareness and acceptance in individuals with ASD and allowed them to develop valued identities. Some individuals have chosen to use these relationships and valued identities to establish and further a movement that is beginning to have social, cultural and political implications for people with ASD. The use of the computer technology coupled with the internet has allowed people with ASD to challenge common perceptions held by professionals regarding their abilities and has allowed the articulation of previously unexpressed aspirations, ideals and values. Finally, the internet has offered a space, albeit virtual, for a group of people to belong to a community.

“Internet chat reinforced the understanding that most people have difficulties – but a peer group in which others have similar experiences gave me something that most people experience from early childhood – understanding.” (‘Merlin’, personal communication, June 12, 2009).

On Getting Better

Sunday, May 10th, 2009

Also posted on Autism @ Change.org
I am currently reading two books – ‘Embracing The Wide Sky’ by Daniel Tammet and ‘See Jane Lead’ by Lois P. Frankel. Why am I reading such books? I have just asked myself that question and the answer doesn’t come all that easily. It’s something about the search for meaning and wanting to be better. Better? Better than what? Better than anyone who has ever said that I can’t.
But lately I’m the one with the broken record – the ‘I can’t’ story, the ‘I’m not good enough’ story, the ‘I’m a fraud’ story. Years of listening to others and the compounding self generated ruminations has brought me to another existential impasse. I am left in the dark having to prove myself to myself.
Tammet, an Asperger man with Savant syndrome writes of a possible way out of my quandary. He speaks of multiple intelligences, training the brain for happiness, and practice and perseverance being at the root of exceptional skill. So it is as easy as that – I’ll just train my brain to think BETTER.
BETTER? BETTER THAN WHAT?
Better than men? Lois Frankel is going to tell me how to do just that, be better than men – at work; in fact she will share 99 Ways for Women to Take Charge at Work. I’m going to combine High Self Expression with High Concern for Others and become the Assertive Leader I need to be to influence my colleagues.
Both Tammet and Frankel talk about IQ and EQ the Intelligence and Emotional Quotients. Tammet discusses the alarming history of the IQ test and its use as a tool for the weeding out of imbeciles. Both agree that the Emotional Quotient has been a useful addition to the way we view behavior and assert that, according to Goleman (the father of EQ), the better my EQ the more likely I am to succeed.
Frankel also introduces LQ – the Likability Quotient. Likability Quotient! – I do believe I’m thwarted.
Intelligence – I have accepted that my Autistic Intelligence can’t be measured and that I am left without a full scale IQ, Emotionality – well I’m very emotional but it takes exceptional focus to rein that in and try to begin to read and understand the emotions of others (a science for me), but Likability – how do I contend with that one. Apparently like autism, likability also falls on a spectrum. My LQ must fall somewhere between an inordinate need to be liked and a complete lack of care for how others perceive me. Let’s not forget for a second that I also have an AQ (Autism Quotient) – I’ve taken the online test!
I’m going to have to think about my LQ while I continue to Embrace Tammet’s Wide Sky.
Maybe with my combined IQ, EQ, AQ and LQ I will be BETTER!
BETTER?
BETTER THAN WHAT?

Career Direction

Tuesday, December 16th, 2008

I love my work – the work I do with people. It seems aI can excel in study with a HD average!! So why do I feel Unfulfilled and Unrecognised. My main passion is working with people with ASD, counselling and working through issues. I have a lot ot offer this discipline but I see people more accomplished that me and think how do I get there (and fast). This is the wrong approach I know. I feel like there should be more doing more interaction – building of protocols perhaps – but I feel like they (NT Profssionals) may not listen to the Autistic person – or maybe they will as the token person.  How do I work through these issues.

Perhaps this is all just rearing its head because it is nearing Christmas and I get restless at Christmas.

Journey

Monday, August 11th, 2008

Tomorrow I head to WILD08. Yesterday I was spending time with family and it was interesting to see things through their eyes. My Nanna is proud – she watched the you tube video of the previous WILD – I don’t know how much she could see as she now has Macular Degeneration. She asked me if I was the only person with autism going and I said I was and she said she thought that was big responsibility. I said I was worried about the hugging – my Aunty and my Nanna noted that there was a lot of hugging on the You Tube Video. My mother has entered the world of web 2.0 and the internet at large – she now has a facebook, a blog and a wiki. I am sure she will catch up with this blog at some stage. Jeremy (my brother, also Autistic) was over from Melbourne he left early with my dad – seemed agitated, leaving is his way of coping i guess.

My step sister Amber brought Caramello Koalas for me to take overseas, good thinking!! Cadbury chocolate in a Koala shape – very Aussie. I have been trying to wrack my brain as to what to take or what people expect from an autistic woman from Australia. I have my mind – that is my biggest gift!! I will gift them some of my writing and photos. The world from my perspective.

Mac in an IBM world?

Saturday, August 9th, 2008

The Apple Mac in an IBM world…… not a new concept……… just my take on it.

 

Imagine you work in a company that runs networked IBM computers and you have the only computer with a different operating system such as Apple or Linux. What does this mean for you? It may mean every time you get a file from your colleagues and try to open it is not formatted properly or it is unreadable. Imagine that many of these files were vital to your operations and as a result of not being able to read them or only receiving part of them you were not able to fulfill your position in the company. Then imagine that your computer has trouble operating properly even as a stand alone unit. You have a number of programs that are supposed to run simultaneously but when you try to do that programs keep shutting down. You also have databases in which information is stored but you can only access this information one database at a time so it is difficult to cross reference or combine different types of information.

Autism is somewhat like this, the autistic brain is like a different operating system that doesn’t process information in the same ways that a typical brain processes information. The neurotypical (normal) brain is like the IBM system and the Autistic like the Apple or Linux. They are both computers but because of their differences they don’t share all of the same language. What is particularly difficult for the autistic brain is the processing and combining all of the social parts of communication, particularly its non verbal components. This is because like the computer described earlier the autistic brain has difficulty running two or more programs at once so whilst a person may be able to pay attention to the sound of someone’s voice they do not have the capacity to simultaneously observe facial expression or body language or conversely by paying attention to the visual details of a person’s mouth they miss the content of the speech. Sometimes the brain is unsure about which information to process with its limited resources so it shuts down all of its “programs” leaving the person confused and anxious and unable to communicate.  And like the computer I describe with its isolated databases, being unable to cross reference information also means that people may have problem combining different types of information such as fact and feeling, self with other, and thought with action.

For the person with autism an effective education is like a software upgrade for the computer described, it allows people to make better sense of incoming information, helps improve simultaneous information processing. Effective educators present information in a format that can be understood by the person with autism typically this is a visual format ranging from pictures to words or combinations of both. People with autism prefer routines so that they can predict what types of information they will be required to process and when and so that they can prepare themselves for this interaction.

What this translates to in daily life is somewhat of an uneven profile of talents and difficulties to be explored by the autistic and his or her supporters.


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