The Importance Of Collecting And Preserving Autism History

Filed Under (Activism, Autism History) by Estee on 17-09-2012

Introduction:

You can’t find a history of autism, or the term, prior to 1911 when Eugen Bleuler defined autism as a detachment from reality in terms of understanding schizophrenia. Try reaching for an autism history into the 19th century and beyond, and you won’t find it, necessarily. Historians of autism, and there are few, draw upon historical figures that possess our modern understanding of autistic traits as presented in the DSM IV. Some of these historians include Uta Frith, Mitzi Waltz, Harlan Lane and Michael Fitzgerald. Waltz’s book Autism: A Social and Medical History, is about to be released. It has been said that the practice of identifying autistic people in history is a bit like diagnosing the dead. Skepticism around the practice, perhaps assisted by current autism hype and politics, I would argue, might deter some historians from venturing into it.

In this post, I will cite the work of disability historian Geoffrey Reaume and his call for more research into the history of disability, and the proper saving of it amidst the tenuous nature of information located on the Internet. I will point out how autism history is relatively modern, how it can be in jeopardy by virtue of the “movement” for rights and recognition occuring online. To this latter point, I will mention The Autism Acceptance Project (TAAP) and its event The Joy of Autism: Redefining Ability and Quality of Life (2007) to illustrate how I, as its organizer and curator working with autistic board members and an autistic advisory committee, attempted to capture a recent autism history/movement by illustrating a few of the steps of assembly and dissemination as an historical exercise in itself. I attempt to illustrate potential issues and pitfalls in archiving a modern autism history. From reading Reaume, documenting thoughts, method and people is an important part of documenting history. This is already a long blog post and the topic deserves more attention than this format can provide. Finally, I will suggest that autism is still largely absent in the wider disability discourse, which might be more widely accepted if more research is done into the history of autism.

Collecting Autism History — Choices and Cautions:

The history of autism does not need to be limited to autistic people. As Geoffrey Reaume points out in his paper, Disability History in Canada: Present Work In the Field and Future Prospects, we need more research into the history of all disabilities including sensory disabilities, intellectual disabilities, physical disabilities, disability and eugenics, disability history as it intersects with race and immigration (and gender I would add), mad-people’s history, and activist histories. He does not, however, cite autism history, specifically. As I mentioned, because autism is a very recent diagnosis (1993), oral histories and autistic memoir have coincided with a recent disability rights movement of the 1960’s. These have contributed to a rapidly burgeoning Autism Rights Movement. We understand autism, therefore, in very modern terms and autism is still largely missing among a more vast body of disability history.

“In order to have a fuller sense of history, including where disabled people lead lives that are as mundane and full of contradictions as that of most people who are not disabled, a wide variety of sources need to be preserved and a wide variety of histories need to be told.” Reaume cautions us that the bulk of modern history, as it were, is locked up in our computers. One day, he argues, those computers will break down. The internet will dump our information; our emails are not printed on paper to be saved. Such correspondences have contributed to our understanding of how the disabled were treated and regarded by the medical profession. They also have illuminated the private lives and struggles of the disabled, as two examples.

This brings me to the thought of how much of our autism history, and the history of the Autism Rights Movement exploded online. Due to the very nature of computing and ease of use to communicate in this format for many autistic people, we also run the risk of losing it. It was one of the reasons I curated the exhibition during the event The Joy of Autism: Redefining Ability and Quality of Life in 2007. This comprised a series of events, lectures and visual exhibits.

Organizing TAAP and The Events:

As curator, (note, a non-autistic person) I attempted to capture the YouTube videos, the blogs by autistic people and autistic allies, the political debates and the resistance of autistic people to others ascribing an identity to them that was based in fascination and fear. Accounts had been recorded online as personal stories about behavioural treatment, schools, and institutionalization, parent abuse, infanticide, as well as statements about autistic perspective and personal strengths went unrecognized by the medical research community and the media. These usually took an online blog-form, although autistic people began socializing in online chat rooms and social games before then. Much of this was aimed at refuting popular mythologies that were proliferating about autism and people with autism as unaware and “not even in the room,” to describe a vacuous, unintelligent nature of autistic people.

We (interested volunteers and autistic people) exhibited important new websites and their content in a more traditional gallery-exhibition format. The exhibit was mixed with video, artwork, published work executed by autistic people on large signage, some printed on fibre glass as floating; thoughts, by autistic people, about how they had been treated and regarded. Different aspects were located in different gallery rooms at The Lonsdale Gallery in Toronto. Videos produced by autistic people and activists played on a loop so that the audience could watch as well as hear the voices of autistic people, some of them who used text-to-speech devices. YouTube was new at the time where people uploaded their videos. The generous size of the gallery befitted the echo of the videos — an autistic echo as the videos kept playing while the audience read signage and looked at artwork; a continual reminder of autistic presence. A room full of conference materials (conferences organized by and that included autistic people, such as Autism Network International’s AUTREAT) was made available so that visitors could conduct their own research. A glossy magazine full of writings and artwork by autistic people as well as interviews of two major artists in the exhibition, Larry Bissonnette and Jonathan Lerman, was distributed.

To accompany the exhibition, the lecture series was held at the Al Green Theatre in downtown Toronto. We produced a glossy brochure with the artwork and the presentations of our autistic and non-autistic presenters along with the purpose of the event. We intentionally located the event in the middle of the medicalization of autism and the “tragedy” model of disability and positioned autistic lives as a “joy.” This was done by writing title ideas down and distributing among the autistic advisory committee for comment and approval. The final decision for the event/exhibition title was reached by consensus of fifteen autistic people. The predominant othering of the autistic person was countered in the “redefining autism” part of the title in order to reaffirm agency and made the event activist in nature. It meant to stare back as a result of being stared at. Just recently, The Autism Acceptance Project which staged the events, has been recognized by The Autistic Self Advocacy Network (ASAN) as “one of the most important events in the history of autism acceptance.” This is a step to autistic people claiming their own histiory.

The Importance of Record Keeping:

With respect to record-keeping, we keep originals and make, then bind copies of newspaper ads and articles that gleaned a great deal of media and public attention at the time. All the lectures were taped and we will get permissions to get them posted online in an upcoming new iteration of the TAAP website. As for the exhibition, the content was photographed, so we have a few records in this format, although there are not enough to reflect the depth and scope of the exhibition itself. It is here I would recommend better photo and video recording and more thought into saving, archiving and disseminating the results and content of events. I had posted the limited exhibition photos online at The Autism Acceptance Project website (www.taaproject.com) , along with the submitted artwork and writings by autistic people. Recently, as Reaume predicted in his essay, we lost that information when the website was hacked earlier this year. Not all of our content is recoverable.

Also important is the abundance of resources and contributions at Neurodiversity.com, the work of ASAN (The Autistic Self-Advocacy Network) as well as other major agencies and projects run by autistic people prior to and after TAAP. Specifically, nerodiversity.com remains one of the websites containing and assembling significant autism history that is at risk of being jeopardized if not kept in hard-copy. Specific and notable to Canadian autism history is Michelle Dawson, a Canadian autistic researcher. Her work, under the umbrella-title, The Misbehaviour of Behaviourists, is a significant piece of the history of how autistic people are mistreated in Canada (The Auton Case, The Human Rights Tribunal, and her exclusion at Autism Society of Canada). She has recorded her work at the website No Autistics Allowed (www.sentex.net/~nexus23/naa_03.html). These are only three examples of many more autistic-run online organizations and individuals — all which must be preserved, recorded and interpreted. This is something that more researchers may wish to consider.

Can An Autism History Really Exist?

“…we have to value all aspects of our past and to instil this value in others who keep these records so that future disability histories can be preserved, written and debated for generations to come,” says Reaume. “In doing so, the historical memory of our collective past can, one would hope, make for a better future where disabled people are not marginalized and oppressed as has so often happened in Canadian history. The history can influence a collective sense of identity and political engagement. It can also influence public policies that have a direct impact on people with disabilities as policy-makers learn from the past while being influenced to improve practices in the present.”

I would wager that most people don’t acknowledge that a history of autism either exists, or could exist. When autistic people take note that they “don’t exist” in the consciousness of society, it would be difficult to own a history. In an activist vein, neither the term autism nor the recognition of autistics as valuable or capable, even within the context of severe impairments, exists as a widely accepted definition or understanding of autism. Within Critical Disability Studies, there is a lack of use of the term autism as we otherwise hear of the deaf and blind communities, one might argue, precisely because there is little written about autism in history. This connotes that there is still not enough citation of autistic identity and history, even within Critical Disability Studies programs, although there is acceptance that this is an area in need of development.

As someone invested in autism, rights, inclusion and autistic citizenship and identity, I feel this absence when reading Reaume’s citations of particular disabilities written in historical contexts, likely in light of a recent diagnostic label. In Critical Disability Studies, autism is lumped under the broader label of intellectual disabilities. Yet this lumping often ignores the particular needs and struggles within this community. While labeling can be dangerous and problematic, it can also lend itself to assisting and accommodating the unique needs of this population. Autism is unique in many respects, and requires a unique set of teaching methods, not analogous to, but parallel in terms of customization of education as we do for the blind, deaf or dyslexic communities. Autism also shares its history with the wider disability movement. It also intersects with race, gender, cultural, and socio-economic factors. It is important to note that while we share history within the context of our times, and with groups that may share discrimination issues, needs and histories are still unique. Further, not every autistic person shares the same experience, personal history, or opinion. In keeping with Reaume’s call, these are some more reasons to pursue historical autism research.

So we need to keep telling our stories. Reaume cautions us, however, not to exclude or revise history. Problematic approaches to history can include hagiography (making disabled heroes), presenting disabled activists as “devoid of flaws,” or histories which reduce medical interventions as “automatically oppressive.” To this he reminds us to value “all aspects “of our history. I would add, an “inclusive history.”

Research in autism is dense with analyses of cause and behaviour. I often wonder how far we’ve come from The Age of Enlightenment which uses its scientific subjects to deduce not only the nature of man, but its abnormalities thereby reinforcing the concept of normalcy and perpetuating our binary understanding of disability — the normal versus the abnormal. Neuroscience inspires us with a promise of understanding our intrinsic nature and raises bioethical concerns. Typical to how we’ve acquired knowledge to-date in research, we use comparative scientific methods. Counter to research that merely objectifies autistic people as subjects, and normal-abnormal viewpoints, we have vibrant autistic community who argue that we are not just the sum of our genomes. Researchers often overlook autistic voices – in the various forms that autistic voice rises up — and perhaps unwittingly threaten autistic agency. It will be curious to look back at our history, if only we interpret it ethically and save it for future generations. We have to begin with the research of autism history in many contexts and keep records, preserving them from the threat of losing information on the Internet, and assert the existence and the complex lives of autistic people.

Reference:
Reaume, Geoffrey. “Disability History in Canada: Present Work in the Field and Future Prospects,” Canadian Journal of Disability Studies 1:1 (2012): 35-81.

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.