Mental ability and the Discourse of Disease – another comment on a Globe & Mail article on “Treating the Brain and the Immune System in Tandem”

Filed Under (Accessibility, Critical Disability Theory, Disability History, Discrimination, Ethics, Eugenics, Identity, Inclusion, Institutionalization, Intelligence, Media, NEugenics, Newgenics, Research, Science, The Autism Genome Project, What is Disability?) by Estee on 19-01-2015

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Again, the suggestion that mental illness – an umbrella term under which autism has also been thrust – is discussed in terms of biological disease. Says the Globe & Mail this morning: “It probably brings us closer to hammering in the idea that mental illness is a disease… It’s a disease we don’t fully understand.” You can link to the full article here by clicking this sentence. Let us put aside for the moment that our medical journalism lacks any critical thinking or understanding of a now broad oeuvre of disability theory and literature. A critique of the media is indeed part of this blog post. Journalism has become as cheap as reality-TV – let’s make something out of nothing. Sure, I’m a cynic, and I tire of news reports on autism and the discourse of mental illness as disease. They are indeed a big obstacle to much of Adam’s progress in terms of how people accept and view him.

The “great” modernist project has been built around not only biology, but revolutionary biology. This includes environmental – internal and external biological causes for “mental illness.” There are two components to that sentence to unpack; the first being that the modernist age has been defined by production and individualism. The notion of autonomy is conflated with the working citizen who fulfills the Social Contract by virtue of pulling oneself up by one’s own boot-straps. Simply put, it stands to reason in this view that our biological goals have largely been built on supporting what is a statistically “normal” “good”-working body. This was indeed a part of the Eugenics Project. Any body that falls beyond the bell curve, continues to be deemed a financial burden and a cost to society. Therefore, the creation of a dependent body is morally judged and biologically defined. This is typically what is constituted as a social construction under which we have created institutions, special education, early intervention and the like.

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I am tending to envision (as do others) our present age not simply a post-modern age – although I prefer post-modern theory to redefine the human and extend to other ways of knowing outside of the medical model – but a bizarre hyper-modern period (Umberto Eco used this term in hyper-reality, aesthetic, theory). Briefly, this means that we have extended the Enlightenment project – the one that created modernity in search of normality – into overdrive, seeking to land the first man not on the moon, but to create his or her “theory of everything” to define disease – or the right or wrong kind of human. The first discoverer wins the big financial and reputational prize. Disability theorists do not en masse agree or disagree with the implications of biological alterations, and the use of technology has indeed proven to change the lives of many. I do not have the space herein to discuss all of these aspects.

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Instead, let me point to a belief that every research project must create a cure as good as it was for polio. I mention this as an example of the drive to cure diseases of all man-made kinds as well (meaning the socially constructed ones). This raises all kinds of important questions about illness and pain itself including the right to live, die, moral judgements about illness, and so on. I am not mentioning polio for these reasons here, but as an example of how a drive for any cure or human improvement has taken on hyper-funded business investment in research and competition. As such, I am citing the profit incentive for medical research. The two tied are not necessarily wrong until or unless we examine our motives.

I challenge and disagree with many theorists (or bioethicists) who may purport that it is better to separate any linkage of today’s genome and biological research with early twentieth century eugenics. I believe (as Rembis, 2009; Hubbard and Wald, 1999) that we continue to link behavior with biology and have hybridized these into “mental illness/health.” This umbrella term seeks to broaden medical diagnostics from which many industries may profit, namely pharmaceutical and therapeutic occupations. The DSM V is nearly big enough to take a bullet, and it will continue to expand so long as we rely upon a medical model as our only source of knowledge. As such, autism numbers will continue to increase within this model, not because of something environmental or biological, but because of how we imagine and create discourses.

It’s not looking good for autism from where I sit under this rubric, I realize this. We all know that autism, like many other cognitive disabilities, are diagnosed by observation for which we have created an extensive lexicon of disease and abnormality. Bio-markers become a shared lexicon infused with moral implication. Yet, we also know that there are many other ways of knowing and a plethora of disability theory is ignored in most discussions driven by journalists or medical communities. Also, let us not ignore the criminalization of behaviour (an example of moral judgement stirred and shaken with biology) as a reason to create new research business. In this, please test my theory – there will not be one news report of a criminal act that is not linked to mental illness today. I’m not trying to create a conspiracy theory, but there is a definitive financial drive for ameliorating many bodies, and we all take a part in creating the discourse. (Reinforcing discourses is another blog post).

I will agree with Rembis when he states,

“Any informed discussion of the limits of behavioral genetics research must take into account the historically contingent socially situated nature of impairment itself. Such an argument would not deny the existence of impairment. Instead, it would begin with a critical analysis of the social, medical, scientific and juridical discourse at the root of taken for granted classifications of impairment. This type of critical analysis is already taking place in some of the arguments concerning mental “illness” and mental health services …as well as those concerning the social applicability and general reliability of the results of intelligence tests “(Rembis, 2009, 592).

He also bluntly states, “The recent emphasis on genes stems in large part from experts’ drive to tap into the hundreds of millions of dollars made available primarily through NIH Human Genome Project, as well as through huge multinational pharmaceutical companies. There remains, however, a much deeper desire among scientists of the world to bring the vagaries of human reproduction and development under scientific control that continues to drive much of genetic research. Only when we begin to think critically about taken for granted categories of impairment and examine the history of eugenics in a new light will we be able to assess the implications inherent in current and future efforts to control human reproduction and behavior.” (594).

Genetic discrimination (Hubbard and Wald 1999) is already in our midst as the “agents of truth” – a term used to describe how we take the words of medical researchers and how we view them (Rose and Rainbow, 2006) – have already defined autism as a genetic abnormality. Note, that I don’t agree with Rose and Rainbow, however, when they state that biopolitics is not about eugenics as much as capitalism and liberalism (211). Contrary to their position that we need to develop new conceptual tools for critically analysing how biopolitics plays out, I believe that it is impossible to untangle modernity, capitalism and our propinquity to find biological causes for aberrant behaviour and mental illness – morally judged designations with supposed (bad) economic implications. This blog post does not do all of these concepts and arguments justice; however, parents and professionals must all challenge the reasons for the propensity for researching biological causes for autism and/or mental illness. Without doing so, we risk losing opportunities for creating a vibrant future where autism is accepted and where our children may live in peace with education, friendship and family. It is a point of fact that charities such as Autism $peaks spends less than 4% of its budget on services for autistic people (services is another blog post too). Far from being utopian, this thought represents a need for examining social mores in order to overcome the obstacles that prevent social inclusion…for every body. Also, I will agree that the body is under great transformation in terms of identity politics in the way we imagine it, and the other ways of knowing and imagining it can and does exist outside of medicine.

Recently, I am interested, as a woman, theorist and mother, in the lovely intimacy I share with my son as caregiving can be a very physical act. Touted as a burden by many charities and the like – including fellow parents who yearn to have an independent child – I have been grateful to be put into a situation where my expectations have been radically altered; where caring has become an important part of my treasured (ever-changing) identity. This has been created by the reality of caring and the mutually negotiated relationship I share with my son. Therefore, reading accounts of genetically ameliorating autism, or relentless and repeated suggestions that disability (often shoved under the “mental illness” umbrella) is biologically caused or wrong, is troubling for my son and I on many fronts, some of which I have outlined here. Perhaps the Globe & Mail writer Wency Leung may take some of these points into consideration. We need to imagine otherwise.

References:

Hubbard, Ruth. Wald, Elijah. 1999. The Gene Myth: How Genetic Information Is Produced and Manipulated by Scientists, Physicians, Employers, Insurance Companies, Educators and Law Enforcers.Boston: Beacon Press.

Rembis, Michael. 2009. (Re) Defining disability in the ‘genetic age’: behavioral genetics, ‘new’ eugenics and the future of impairment. Disability and Society, 24:5, 585-597.

Rainbow, Paul. Rose, Nikolas. 2006. Biopower Today. Biosocieties. 1, 195-217.

A Chance to Participate in a PhD Thesis:

Filed Under (Research) by Estee on 29-10-2014

CALL OUT

I am completing my PhD thesis on autism health care services in Ontario with a special interest in evidence-based applied behavioural therapies. I am a social scientist and so my project aims to explore some of the social and political implications of these therapies. I will be conducting a total of 50 confidential and anonymous one hour semi-structured interviews with practitioners, autistic people, clinicians, teachers, parent’s, diagnosticians, and policy analysts.

If you are interested in being interviewed, or would like to hear more about my project, please don’t hesitate to be in touch. If you are not interested in being interviewed but have some names you would like to pass along, that would be very much appreciated – but no pressure to do so.

Thank you,
Julia Gruson-Wood juliagw@yorku.ca

Who is Safe; Who is “At Risk?” Some More Considerations Before April

Filed Under (Ableism, Activism, Advocacy, Charity, Disability History, Government Services, Inclusion, NEugenics, Newgenics, Pity, Research, school, The Autism Genome Project) by Estee on 25-03-2013

As we head into April, I thought I’d post Protest on the Plinth which states that the value system from the Nazi era hasn’t changed much today. If people make out disabled people’s lives to be “intolerable,” then how can we make safe legislation?” asks the disabled woman in the video. It is not egregious to point to what happened to the disabled during the Nazi era and unpack the value systems that linger today – that lead to the belief that disabled lives are an intolerable economic burden on society. Posters of the “costs” of the disabled to the German “folk” were commonplace.

Systemic mechanisms (government programs, schools, corporate bodies) that tell us what kinds of bodies (and minds) we are supposed to normalize, regulate, or get rid of, or what are “acceptable” minds and bodies. Charity campaigns don’t typically tell donors that they need to be patient as corporations or as individuals; that they to collaborate with disabled people, work alongside people with disabilities, or that it is a disabled person’s right to be educated (instead of remediated as a “ramp” to normative education -see Moore v. British Columbia, 2012). They don’t talk about autistic and disability rights. Charities are busy raising money, mainly, for cures.

When scientific and representational linguistics point to children “at risk,” we might instead ask, just who are we trying to “keep safe” and why is society so dreadfully afraid of people with disabilities? Remember to consider language and how it both reflects, and shapes, the way we consider people with the autism label. From where I’m standing, however, we are definitely at risk, not from autism, but from an intolerable society.

And don’t forget to check about the counter campaign to “Light It Up Blue” by checking out the Autism Acceptance Day Blog Postings.

Talking About Autism & Building Community

Filed Under (Autism Theories, Autistic Self Advocacy, Community, Language, Media, Research, Uncategorized) by Estee on 11-11-2012

How can The Toronto Star and by many autism charities address the diverse needs and views of the autism community? My concern is that there is little (if not any) of critical disability perspectives. Typically, journalists run to autism “experts” with medical backgrounds and this becomes the only lens through which we have come to understand and view autism. Autism, a classification imagined and made by humans, has become reified. This essentialist view is the most troubling for our community.

My questions of late are: How can we facilitate a respectful discourse among autistic people with different experiences? How can we include non-autistic family members into the dialogue who are also stakeholders, but whose very involvement in autism charity (which directs research) can be considered based in positivism and reflective of an imbalance of power? In other words, concerning the latter, as non-autistic parents and medical “experts,” we impose a concept of normalcy that we are discovering through autistic communication of experience that, in fact, is different from how many of us non-autistic people view things. We (typicals) consider our viewpoint over and above the experiences of autistic people. We produce knowledge that is language-based and that is taken as more true and accurate. I’m also very curious how we all appropriate such impositions upon our own identities? For instance, if you are given a narrative about yourself (autistic or not) and how you must be, do you then turn it inward (this has also been refered to as internalized ableism or oppression)? How does this effect the questions posed here?

Autism charities, researchers and news media need to consider these questions to reflect the broader autism discourse, even when many views run counter to their marketing campaigns and economic research interests (or should I say, especially when). By doing so, we may discover ways to better address the real needs of autisic people specifically. I’d like to see autism charities take up this dialectic discourse. It doesn’t have deadlines or meet fundraising goals, but this is what our community needs the most. I get concerned when autistic individuals are folded into big charities largely populated by non-autistic interests.

Feminist research has pointed to a constructive confrontation. “bell hooks (1990) declares the need for ‘meaningful contestation and constructive confrontation between different perspectives and urges the creation of safe spaces where critical dialogues can take place between individuals who have not traditionally been compelled…to speak with one another.”(Hess Biber, Leavy, 2007)… constructing a space that is open to dialogue across… voices are granted equal air time, we actually build community…” This comes from feminist research methods which has changed the way we have been able to do research. Both feminist empiricism and emancipatory methodology can provide useful examples to the way we approach autism research and community.

Reference:

Sharlene Nagy Hesse-Biber & Patricia Lina Leavy, Feminist Research Practice, London, Sage Publications, 2007.

If you are interested in a Media Analysis of Disability, See the Research done by Disability Rights Promotion International.

Exporting The Autism Genome Project To China

Filed Under (Newgenics, Research, The Autism Genome Project) by Estee on 10-11-2012

Tagged Under :

The Toronto Star has dedicated a series of stories about autism. It’s cheaper to hire a scientist in China — about $16,700 a year reports the Star’s Tanya Talaga. Autism…the “creeping, silent epidemic,” (yes that language is still being used which should tell us that the reporters aren’t reporting from a critical perspective), and it “needs to be cured like cancer.” Bring on more puzzle-washing – Autism Speaks still runs its campaigns like the very controversial cancer charities (aka: Pink Washing).

There’s no mention of how the autism category keeps changing with the years and changes with society’s fears and imaginings. There’s no interviews with autistic individuals (yet), and noon from the disability rights movement to support autistic people. I’m hoping they will come out to support us.

Like our economy, we focus mapping autism genes now to China — the company BGI has apparently very big machines running twenty-four hours a day, seven days a week to break down DNA. BGI has “mapped the genetic code of the giant panda, a grain of rice, a silkworm, soy, tomatoes, chickens…” Dog gone it, let’s find the hundreds of genes to cure autism and then the economy will be well again.

I mean, isn’t this what it’s about? It’s certainly on our minds with the “fiscal cliff” just ahead. “Most children with autism are rejected by kindergartens and schools…staying home becomes the only option for a large majority of these children…by leaving them on their own, these children lose all chances of developing their potential talents that they originally might have,” reports Tanya from the Star.

Let’s break that down. Yes, access to schools is a big problem. The Supreme Court of Canada just ruled that public schools now have an obligation to accommodate to which The Globe and Mail editors reported would “bleed” from other programs. The Globe editors stated that the Supreme Court “overstepped their authority,” but I wonder if they would have said the same had the ruling be in favour of segregating children with special needs. After all, the Toronto District School Board just cut its special education programs and Educational Assistants as a cost-saving measure. Children with special needs are expendable. It seems children with special needs are a huge economic burden, or so think the Globe editors and a whole bunch of other people.

Next, I’m wondering about those talents, after all. The Star says that autistic children have “potential talents” that they might “originally” have. Is the writer suggesting that autistic people have talents if they were to become normalized or that autistic talents in and of themselves are not being nurtured and educated? Is the journalist accepting that autistic people have any talents or potential? If so, it would go against Globe Editor notions of talent and shall we say, productivity — so central to our epistemological understandings of shall I put it, the industrious person serving the economic well-being of the state.

Finally, and I will be writing more posts in response to The Star’s one-sided, unbalanced reporting so far, is this then the reason to cure autistic people; because it’s hard to get into schools? This for me is the most frightening absurdity of the article. It is the notion that the blame (and we’ve tried to blame mothers, and now it’s the old fathers), on the individual body. The onus is on our bodies to change, not on society to change it’s attitudes and systems to support autistic individuality and yes, potential — body-politics indeed. Further, the fact that we’ve exported this work to China where people are worked to the bone in huge factories, does nothing to soothe me or make me happy about finding the autism genes. It points so strongly to the fact that we have exported to China the creation of the great Newgenics machine, and we do it gaily. Think of China and sex selection and then to the issues that if say, autism is found to be more common in boys than in girls, that would make sex selection likely, okay.

I think that the autistic self-advocacy movement and allies have to do something much greater now . We are doing the hard work for sure, but these large spread gigantic projects without equal critical reflection makes me worried and I hope you are too. I think we have to gather to run a critical reflection campaign devoid of propoganda. We want society to not just see us and help us for who we are, but consider our rights to be who we are and to have assistance. First, we may wish to begin by using The Autism Project as a platform as the creators of the autism “problem,” not autistic people. Autistic people and families require a set of complex supports and understandings also because not every autistic person or family is alike. I would like to ask reporters to do a finer job of doing real, even emancipatory journalism and not spectacular reporting from a neurotypcial birds-eye view in the name of selling more papers.

Upcoming in The Toronto Star’s Autism focus will be topics on “diagnostic odyssey, navigating school, transition to adulthood, mothers on the spectrum, ageing with autism.” We’ll soon see how the stories are covered, and I’m sure there will be stories that we can all relate to. I want you to watch, however, for who and what will be blamed in order to solve the autism “problem.”

A Short Blurb on Language and Citizenship

Filed Under (Language, Research) by Estee on 09-11-2012

Reading, reading. Writing, writing. I can’t believe I’ve almost finished a third of my M.A. and applying for Ph.D. We’ll see how all that goes. In the meantime, Adam and I feel co-joined. What do I mean? Well, as always I adore him. I need to put more of my own words to how I may move around him and how I see him move around me, how we can make each other happy (or sad). I never stopped joining him, nor him, me. Is this simply a mother’s love talking? The nuances of our communication — this is what I try to put words to. My language doesn’t do this justice. In lay terms, we interact with our surroundings, we “dance” around each other in a type of language. What is language anyway? “The forest thinks in trees,” I’m reminded. I’m not a philosopher, yet find myself needing to enter. I’m trying to resist names-of-things, for things; to reify. Adam doesn’t do this. Why must I?

I stand and wait in a grocery line. I hear people talking about the autism spread in The Toronto Star today. I haven’t read it yet. I will. Like a car accident I am compelled to look. We are teaming up with China on autism science? What will genetics do to one’s right to live and be? How will this shape us? “That’s great,” I hear someone say. I’m not so certain it’s great. Viscerally, there’s something wrong. I feel it, and it’s not with Adam, not with autism. There is something amiss with how we value, who we value, who gets to value… people.

I am intrigued with Barnbaum’s analysis of theory of mind theory. I am still thinking about it in creative terms — the way I feel and interact with Adam, typical English language failing me, of course. Is it possible to create a new language with my translations and his?

While the following premise rests on the theory, I feel it can be also applied in general terms. In other words, I feel that people have a right to be disabled. Everyone has a right to equal citizenship and we need to unpack how we arrive at capacity/competency citizenship-notions because at the moment, autistic people are not considered (or treated as) equal members of society:

…persons with autism are individuals, with personalities and preferences just as varied as those of the non-autistic population. It is a similar moral wrong… that persons with autism should be valued because they make non-autistic people better…to foist a “cure” on a person with autism fails to recongnize him as a person in his own right, because that cure assumes that the person would be better off cured. There is no reason to assume that once theory of mind is restored that an adults with a mature set of prefences would undergo a personality shift such that he would suddenly come to enjoy the world of mentalizing. If a member of the non-autistic population were confronted with a comparable option — ‘Let us change you fundamentally, and trust us, you will come to love your new life’ — we would find this a horrific violation of that person’s autonomy. Ther person’s integrity as an autonomous individual would be compromised…curing cancer or restoring sight to the person who was blind would not fundamentally change that individual qua person. But restoring theory of mind would…An ethic that requires the non-autistic population to respect the differencts of the autistic population places the burden on the non-autistic population.” (Barnbaum, 2008).

Reference:

Deborah R. Barnbaum, (2008), The Ethics of Autism, Bloomington: Indiana University Press, p.206.

Reflections on the Acceptance of Disability in Society

Filed Under (Acceptance, Autism History, Autistic Self Advocacy, Critical Disability Studies, Disability History, DSM V, Ethics, Inclusion, Research) by Estee on 06-10-2012

Is there a place for the disabled in society?

The purpose of the title is from historical readings that the disabled in history were displaced and living on the margins of society. Who were considered/are considered valued members of society? Socities have been obsessed with placing the disabled into a variety of contexts that justifies human existence, or fears (demons, monsters, mad, deviants) making the normal the privileged members. Without a comparative measure, as it were, what would we humans deem ourselves to be?

I have a series of questions that I’ll be considering (probably for a lifetime). Feel free to try and contribute thoughts in the comment box.

Pro/claiming Autistic Identity:

Is claiming biological identify leading to another possible eugenics movement? Is there a danger to biological self-identification? How important are self-identification and self-advocacy and pride-movements?

Are pride movements perpetuating the dis/abled dichotomies that already oppress? Do you think they have a positive purpose? Should there be a point at which we stop advancing pride movements, in other words, move beyond them? When is a good time to do so?

How important is the label autism to accommodation if autism is a social construct? (It is). Where “special” and enforcing “inclusion” have already proved challenging, maybe even impossible thus far, is it so because we continue to place the disabled out of the confines of the norm. In other words, are we continuing to perpetuate a false dichotomy that does little to value and serve, but more to segregate and isolate? By wanting inclusion, we are saying we are excluded? Does this stance further the goal itself, or not any longer?

Who Gets To Produce Knowledge About Autism?

The DSMV, behavioural analysis and observation, and the categorization of people.

Who gets to diagnose whom? Who gets to produce knowledge and categories about autism? In the past, and to a large extent today, it is non-autistic or “normal” people and we now witness a gradual inclusion of disabled “voices” to this mix. Do disabled individuals appropriate notions of impairment and abnormality enforced by long-held categories made originally by people who have not had disabilities? After all, autistic people are still largely tokenized minorities among autism charities, autism committees, and as participants in autism research studies.

Accommodation and Acceptance:

To what extent is the citing of needs/impairments an important part (or not) of acknowledging that we are all part of the abled-disabled continuum, which herein, I have already parsed?

Do you think the term autism and/or disability will exist one hundred years from now? Or are we a society that simply wears the same dress, just in different colours?

Have we learned anything from autistic self-advocates that assist us to simply accept autistic individuals and value the right of all people to exist, be educated, and be valued, no matter what level of disability, in society?

Utopias and ideals have perpetuated individual and societal notions about what we should be – what we are versus what we aspire to be. To what extent may this continue to be a driving force (as in survivial of the fittest) under an capitalist/economic lens, and where are we now with this “force” in viewing the disabled as part of this? As disability has always been a part of human existence, despite eugenics movement’s attempts at normalizing society and eradicating “deviant” people from the norms, how far have we come to accepting, embracing and valuing human difference? After all, while the eugenicists caused great harm to many people, and have continued to do so as a legacy, they didn’t succeed in eradicating human difference.*

Reference:

*In reference to the eugenics movement from Davis, “Constructing Normalcy” in Enforcing Normalcy: Disability Deafness and the Body, pp. 23-49, 1995:

“The conflation of disability with depravity itself expressed itself in the formulation ‘defective class.’ As the president of the University of Wisconsin declared after World War One, ‘we know enough about eugenics so that if the knowledge were applied, the defective classes would disappear within a generation.’ At it must be reiterated that the eugenics movement was not stocked with eccentrics…Rockefeller, Churchill, Roosevelt, H.G. Wells, John Maynard Keynes”…among a longer list. Some food for thought when thinking about such questions.

Issues Arising From “Outside-In”Autism Research and Organziations

Filed Under (Inclusion, Research) by Estee on 13-09-2012

Attending IMFAR for me this year raised many more questions, if not affirmed some of my assumptions about the extent (or not) to which autistic individuals are involved in research as well as autism organizations. While more autistic people may be in attendance at conferences, or may sit as board members, issues about “tokenism” arise; to what extent do we enable autistic individuals to create a meaninful autism agenda? That is, who is establishing the questions about autism to be researched? Who is directing the goals of an autism organization?

Temple Grandin spoke at IMFAR at Toronto this year by webcam/Skype. She urged autism researchers to look at issues effecting autistic quality of life, rather than more studies on “face recognition.” Yet she did not acknowledge that many of these researchers are, a) not autistic or, b) do not practice emancipatory or participatory research. Was this done for politcial reasons, or was it a gentle nudge to send more accepted research paradigms in directions that may be of use to autistic people, or perhaps an oversight? By definition,

“Emacipatory research (that is research which seeks to alleviate oppression) is critical in exposing the mechanisms for producing, maintaining and leigtimising social inequities and domination.” (Ayesha Vernon, “Reflexivity: The dilemmas of researching from the inside” in The Disability Press.)

My assumption is that while Grandin is urging the researchers to reflect on what is important to autistic people, the model is more challenging at IMFAR which is largely based on a non autistic view of how autistic people think, perceive, function. The research was largely targetted to the “high-functioning” autistic population, likely, because this was the most effective, cost-efficient and timely way to complete the research projects. They did not employ emancipatory methods which may not use more common research designs. It is non autistic people largely determining what’s best for autistic people and the balance of power is clearly skewed — it is the researcher directing the goal of the reserach and the relationship of researcher-subject is established. Some quantitative research by autistic researchers has been presented at IMFAR, and we do need more in support of the issues and needs that are produced and articulated by people with autism. As non autistic people, charity organizers and researchers we have to acknowledge when we are looking from the outside-in, and consider changing our approaches in order to provide services that are directed by the autistic community.

Issues arise when thinking of involving autistic participants in establishing the research question, or the agenda of an organization. Sitting on boards with non verbal participants with significant challenges, non autistic members have to exercise patience and understanding with the length of time and the various outputs that enable an autistic person to participate, as an example. Some individuals communicate by typing very slowly, or using other text-to-speech devices. For others who do not have an organized communciation system, the issue of involvement and later, dissemination of the research that is useful to autistic people becomes complex. Some have worked around the issue by stating that the autistic with the more proficient communication system is at least accomplishing part of the task of inclusion. We have to work on offering solutions to participation and autistic direction.

As the founder of The Autism Acceptance Project, I experienced these tensions of working as a non autistic person in an autistic space and tried to resist controling the agenda, and admittedly while I sought a lot of direction from autistic people, this was very difficult to do. As an organized and fairly driven person, setting my own assumptions aside still requires me to slow down and think about my design of the TAAProject website: from to how to include autistic individuals in a way that they can direct the project while using my skills, and theirs, to developing the tools to perhaps target some of the issues that are barriers for all organizations that do not fully integrate and employ the needs and issues of our autistic community.

In addition to the intensive labour and time required to set up empancipatory research projects and the change the structure of autism organizations — both which seek to amelieorate the social oppression of autistic people — their is little capital out there for this. The larger autism charities focus more on causation research and are better capitalized as opposed to volunteer autism organizations more often led by autistic people (Arnold). So, if you are a researcher endeavouring to do this kind of research in autism, The Autism Acceptance Project would like to hear from you.

“Disability research should not be seen as a set of technical objective procedures carried out by ‘experts’ but part of the struggle by disabled people to challenge the oppression they currently experience in their lives.” (Oliver, 1992).

References:

Vernon, Aeysha (1997) Reflexivity: The dilemmas of reseraching from the inside, in Colin Barnes & Geof Mercer (eds.) Doing Disability Research (Leeds, UK; The Disability Press) 00. 158-176.

Preistly, Mark (1997) Who’s research? A personal audit, in Colin Barnes & Geof Mercer (eds.) IBID., pp. 88-107.

Arnold, Laurence, Participatory and Emancipatory Research: What’s The Problem, in Science 2.0, May 15, 2010.

Some Thoughts About The Various Ways of Being Excluded

Filed Under (Advocacy, Autism and The Media, Celebrity Advocacy, Communication, Contributions to Society, Critical Disability Studies, Discrimination, Inclusion, Parenting, Politics, Research) by Estee on 10-07-2012

I have a comment on comments, either in comment boxes or full blog posts about other writers and bloggers. Usually I won’t write about it, but I decided to write in my own defence. In so doing, I’ve had other thoughts about the various ways of being excluded, as either autistic people, or as autistic allies.

Recently, I did a self-search on Google. I am sad to say that I get used to disrespetful commenters who seem to create a narrative about me that is unfamiliar to me. I am also delighted, however, by comments that build upon a constructive dialogue about autism and disabiltiy and how we can remove the barriers for autistic individuals. I happen-stanced upon a post from 2008 about my blog — that mostly I “get it right,” but advocate for doing “nothing” for the autistic person.

If you’ve been reading my blog since 2005 I’ve done nothing but critically evaluate everything that Adam and I have come across in terms of therapy, education, autistic/social value, and opportunities, and the lack thereof. While the nature of blogs has changed since 2005, many of which have become syndicated journalism, I’ve kept mine in journal-mode, writing about my own growth and development as an autism parent to my beloved Adam.

Adam has been in “therapy” since he’s been 20 months of age and I have reams of notes and binders I have taken to create his programs, track his progress, develop his plans. I have created his programs along with other professionals that use ABA, RDI, Floortime and other methods. I have a decade of experience of autism education and various therapies, many of them dubious. I’ve witnessed improvements in the field where I continue to have a watchful eye. I predicted that we would be forced into an ABA program, and here we are, in an segregated school for autistic children. Not that it’s a “bad” thing. I am actually grateful not to be in a system that completely disregards him, but is set up more for him. Adam, for now, is happy there and he is learning, but it’s a fact that it’s still exclusion which we mitigate with other inclusive programs.

ABA is something that we’ve had to contribute to improve upon because it’s really hard to change the system. To me it is in part a method and in part a label for a type of education that in some schools, uses other methods in addition to it. Adam and I have to “fit” into a mold and make it the best for him — those are our barriers and limitations for now. We work to fill in the gaps ourselves. I learned and taught Adam how to type…by myself — by reading, studying and consulting others who have other expertise to add. Now his school builds upon what I started. Recently, I was asked to write a book about it, and may do so after this year of finishing my M.A. in Critical Disability Studies. I have now five years of typed dialogues between Adam and myself, methods and back story of how it all began. He would never had had this opportunity had I not taken his education and communication upon myself, and I’m not shy to admit it because I hope it will become more mainstream. I am not alone in this among many autism parents. We make our own roads and other parents will share the work they’ve done.

We still work towards Inclusion, but when I made a recent query within the public system, as predicted, it ended up that Adam would be put in the “lowest functioning class” (their term, not mine). His cognition and “capacity” was determined by his limited verbal ability and results on standardized tests (which we know do not befit the autistic person as much as a dyslexic person cannot read typical text). How many students in these classes, no matter what their label, are not getting the education they deserve? Whose to decide on someone’s functioning level and “capacity” when we give unsuitable tests? Who has the right to decide who is normal and abnormal and how do semantics and labels effect people’s lives? Finally, if we decide to write off a “class” of people from the get-go, where do we end up? We are all effected, autistic or not. How we treat our collective members of society is a reflection of how we think about ourselves.

It seems there is a group of people who don’t understand (or want to set others astray) on the meaning of neurodiversity, which basically acknowledges that different people have different neurologies that make them learn and interact in the world in various ways. Myths are spun because it is assumed that if we “embrace” autistic people (some of us have been labeled “Neurodiversity Advocates” in a negative context) it will not serve their politics. I suppose, in the system we currently have which are so exclusive and politically limiting to us, we can understand the method, but I think it’s ultimately detrimental. An exclusive, “tragic” and medical approach to disability limits community membership and opportunity. Until recently, as autism parents, we have had to feed into the “autism tragedy” model in the belief that this is the only way to garner financial support and services. Despite inroads against the medical and disability-is-tragic models, there are many new parenting studies which seem intent on proving that autism causes families to break apart, which to-date, cannot be proven. This is another way of excluding autistic people and their families — by seeking something to blame, researching etiology and causation instead of spending money on understanding autistic individuals and bettering their quality of life.

If we accept and believe in our children and don’t get tragically depressed, we are written off (as I have been on numerous ocassions) as being in denial. I have been labled a neglectful parent, and a “mental case,” (a revelation of the prejudiced inclination of the autism “advocate” who stated that about me).”Those who stray from the this prescribed script [the tragic or depression 5-staged model from grief to acceptance] — for example, by not being as depressed as predicted — run the risk of being regarded as in a state of denial and in need of further psychological guidance and counselling (Oliver, 1995; Reeve, 2000; S. Wilson, 2003).” I think life is all about struggle and we have to work with it. Nevertheless, when we write publically, we leave ourselves open to criticism of all kinds. I embrace that too, but I will also take it on.

It has been challenging to write this blog for the past few years. I’m not allowed, according to some autism parents, to take joy in my son for who he is as an autistic person. My own ups and downs are disregarded if I do not publically lament in the same fashion as everyone else. I opted not to do this because I always kept my son and his community in mind. If I were an autistic person, I thought, how might I wish to be regarded? I don’t criticize others for their depression because each one of us has to take our own unique journey. I simply believe that I, personally, have to exercise a discipline in my thoughts and feelings, which is not to say I don’t have the same kind as everyone else. I have imposed this upon myself. I have always kept Adam in mind when writing publically because I believe one day he may read this. I also wish to embrace and listen to the autistic community (that is, autistic people). It’s unfortunate when others feel they have to “spin” for political reasons or their own benefit.

The other political debates and controversies lie in semantics and definitions. Words are important as they reflect our thoughts about the way in which we see ourselves. We work against traditional systems that have to-date, been oppressive and exclusive agianst the disabled. Paul Hunt first challenged what we call today ‘abelism’ (a society that favours the able-bodied), in his 1966 book, Stigma: The Experience Of Disability. He said, “We are challenging society to take account of us, to listen to what we have to say, to acknowledge us as an integral part of society itself. We do not want ourselves, or anyone else, treated as second-class citizens, and put away out of sight and mind.” (p. 158).

The Union of the Physically Impaired Against Segregation (UPIAS) was formed in 1974. They re-defined the distinction between “impairment’ and “disability” as part of their mandate to “criticize organizations control-led by non-disabled ‘experts’ for their failure to address the social barriers central to disabled people’s exclusion from mainstream economic and social activity and their lack of accountability to the disabled community.” (p.29)

impairment: lacking part of all of a limb, or having a defective limb, organisim or mechanism of the body;

disability: the disadvantage or restriction of activity caused by a contemporary social organization which takes no or little account of people who have physical impairments and thus excludes them from participation in the mainstream of social activities. (UPIAS 1976z, p. 14).

This social model approach breaks the traditional causal link between impairment and disability. The ‘reality’ of impairment is not denied, but it is not necessarily a sufficient condition of disability.(p. 30).

Writing about autism as a joy, my absolute love of my son for who he is, my personal struggles without pandering to the pressure to lament in typical ways while embracing other’s need to make their own unique autism journey, is about inclusion of everyone. It begins with the fundamental acceptance and belief, however, that all autistic individuals are worthy and valuable members of our collective. It’s a necessary premise.

The social model is not about showing that every dysfunction in our bodies can be compensated for by a gadget, or good design, so that everybody can work an 8-hour day and play badminton in the evenings. It’s a way of demonstrating that everyone — even someone who has no movement, no sensory function and who is going to die tomorrow — has the right to a certain standard of living and be treated with respect. (Vasey, 1992a, p.44)

Reference:

Barnes, Colin, Mercer, Geof and Shakespeare, Tom. “Analysing Disability” in Exploring Disability: A Sociological Introduction, pp. 1-42. 1999 Polity Press.

Towards a New Autism Research

Filed Under (Ableism, Acceptance, Activism, Advocacy, Autism and Employment, Autism and Intelligence, Autism and Learning, Autism and The Media, Autistic Self Advocacy, Book Reviews, Communication, Computing/iPad, Critical Disability Studies, Development, Discrimination, Family, Movement Disturbance, Research, school, Sensory Differences, Transitions) by Estee on 06-07-2012

It doesn’t matter who you are, or how high you rise. One day you will get the call. The question is, how will you respond?” — African American U, Senior Administrator

Adam left for camp this morning. Last week, he did well at his piano recital. His lessons have been adapted for him — colour coding left and right hands, bass and treble clef lines, to give a sense of the many adaptations we’ve learned. Not only have we adapted lessons for him so that he may learn in “typical” ways, but I also asked the teacher to let him explore the piano on his own, as well as have her play for him. I became a musician when I was very young, and a neighbour let me bang away at the keys doing whatever I wanted.

I was proud that Adam was able to attend and play well at his recital. I asked that he make his little bow, and sure, everyone thought that was sweet. Afterwards, as there was another special needs person as part of the concert, I was noticing faces as he sang — his articulation was challenged. I didn’t see gleaming “ain’t that sweet” smiles. I saw strained faces. Not until the children who were fluent with well-pitched voices were singing did the “ain’t that adorable” look beam as high as the church rafters. That effected me a lot, and I pay attention to these subtleties every day. I don’t think people realize the subversive effects of a mere countenance. I, at least, read faces well. Adam seems to pick up on vibes, but that’s my assumption after knowing him for so long.

Last week, Adam was more verbal — asking me “what are you doing?” when I was at work at my desk and he wanted to play. In addition to a successful recital and these questions, we had a “good” week. Having Adam ask me a rare question is exciting. I am happy when he gets more verbal, types on his iPad, and now, starts to ask me questions. When the camp bus came for a visit last week and Adam got upset afterwards, he typed (independently), “why is bus going?” It shows that his world is expanding by his growing ability to communicate. I find myself relieved because I think it will make his life more fulfilling, if not easier in a world that favours the able-bodied and the fluently verbal.

Two days after his verbal “spike,” however, something that comes and goes but improves steadily all the time (akin to a graph with a steady climb overall, but with monthly plateaus and slight dips), and also possibly correlating to the end of school, the transition to camp, a possible cold or allergies (get the picture?), Adam began to twitch more and he lost his ability to talk for a couple of days. He is better at being able to type a few words when he is under stress. He couldn’t do that at all before.

While I still worry, mostly if I see him uncomfortable when it happens, I’m getting better at waiting him out. Whatever is effecting him needs to be processed by him in his own way. Within a couple of days, although the twitching slowly abated. He started to smile and become more verbal after a couple of days of the most intense part of it. I really do not understand what is happening to him neurologically and neither does anyone else. Only some autistic people can give me a sense of it. There is no guru or expert or scientist who has truly “discovered” what causes Adam to tic and twitch the way he does. We know of similarities in other disabilities. Adam was tested for seizures and at least on the day he was tested, it showed negative. These are but some of the things we don’t fully understand about Adam and what we refer to as his autism.

As his mother, I’m well aware of my bias, in spite of my enduring “acceptance” of him. Bias and ideas are so deep-rooted in us that acceptance is something we have to work on every day. (Boy, would I love to read that caveat in someone’s research paper on autism). As Adam’s mother, I realize that although I love him dearly and accept him as he is, it is still difficult to resist the temptation to praise Adam’s “normal” feats and accomplishments only, and not recognize his autistic ones. Like all of us, we are under such a strong ableist or “normalist” influence that we don’t praise, cite, recognize autistic-ness as often as we need to.

We need so much more of a new kind of autism research — one that captures autistic accomplishment without sensationalizing autism. Too often any achievement by an autistic individual gets refered to as “genius.” While in some cases in may be extraordinary, we do this because we are still not looking at autism as a whole in the way we should look at all of humanity. We fracture autism into little bits and pieces as much as we end up doing people.

When I attended Autreat too long ago now (I am due for a revisit), I purchased fifteen years of workshop notes and presentations. I remember when I attended being giddy that there were workshops for autistic kids on how to make their own stim toys. Autreat, founded by Jim Sinclair, who is also autistic, is run by and for autistic people.

For months now since he started in an autism school especiallly, despite my praise of Adam for his feats, I still wonder how I can nurture his autistic-self. So I went downstairs and dug the old material up. Here’s a clue of what I wish to study more about:

How to Play With Dolls: For Kids and Adults Jim Sinclair, disability educator and consultant, coordinator of Autism Network International

For purposes of this workshop, a “doll” may be any inanimate object that we play with by imagining it to have aspects of personhood. This includes the traditional toy-human type of doll, as well as toy animals, and any other toys or objects that our imaginations transform into living entities. In this intergenerational workshop, we will share and explore different ways that autistic people can use doll play for fun and for learning, and ways that parents, educators, and therapists can use doll play to help autistic people in developing skills and understanding…”

Music: What Is It, What Does It Mean To Us, and How Can We Use It?
Katja Gottschewski, musician and music therapist, Bodo, Norway

In this workshop, we will explore different aspects of music. We will look at differences and similarities in how we as individuals or as AC’s and NT’s [autistics and neurotypicals] define and experience music. It will be discussed how we can communicate through music. How is music different than language? Can music be a bridge between AC’s and NT’s?

Understanding How Plants Can Facilitate Connection in Autistic Children and Adults
George Salamunec, HTR, COTA/L, Certified Master Gardener, Susan Golubock, M.Ed., OTR/L
Autreat 2004

Working with, and understanding about, plants can be an effective tool for developing the senses, reducing stress, and learning to make new connections in autistic children and adults. Matching plants to one’s personality and needs is an important first step. Plants provide opportunities for autistic children to explore life, nurturing, modulation, non aggressive options and choices for dealing with natural adversities, and why learning about other life (and people) outside of ourselves is so important…

Making Employment Fit: Accommodations and Other Dirty Words
Joel Smith, Autreat 2004

Employment is difficult for many autistic people. We are square pegs who dont fit nicely into round holes. Rather than forcing the autistic into a job, would it be possible to change the job to better fit the autistic? In this presentation, ideas and real-life examples are presented of how jobs can be modified to best accommodate autistic sensitivities. We will also discuss how to modify your job without alientating your boss and co-workers.

That was from Autreat 2000 and 2004. Twelve years later, I am concerned (especially after attending IMFAR), how we hardly research autistic ways of being. We usually do it framed in a bias — comparative research against the “normal,” population.

We really don’t value what makes up the true and different, “not less,” accomplishments of the autistic person. I’ve read blogs where “experts” bluntly claim that there is “no value” in lining objects up. I’m not going to target the scientist specifically here, but I wonder how many readers of this may have at one time or another thought the same thing? Other than people like Temple Grandin, how can we all study the value of object-organization and how that is transferable into learning at school and later, in the workplace? I don’t think this is a trivial skill that needs to be solely relegated to the OCD side of the human column.

Just because we don’t see the value doesn’t mean it ain’t there. We don’t understand. We are viewing under a comparative, normal versus abnormal one, and that’s so limiting. While I try to make the “least dangerous assumption,” a term first coined by Dr. Anne Donnellan, I realize that I must work to continue to see Adam for who he is in all contexts. It’s a absolute daily task and obligation of mine as his parent. I wake up every morning thinking about this, more than I pander to alarmism. In fact, next time an autism commercial brings you to tears, please ask what buttons are being pressed and why, and if there’s a better way to achieve a quality of life for us all?

I’m also reading Anne Donnellan and Martha Leary’s newly released book Autism: Sensory-Movement Difference and Diversity and I would highly recommend it. I liked especially this example:

According to Oliver Sack’s book, Seeing Voices, in learning sign in infancy he will develop brain patterns remarkably different from his ‘normal’ peers. And he will continue to develop in different ways, but we can in no way call those differences ‘deficiencies.’ He will develop different social and cultural skills. If given the most standardized IQ tests, even with a signing interpreter, he will perform differently, and possibly less well, than his speaking/hearing peers. On tests that tap the developmental experiences of deaf people he would probably score far higher than his hearing friends. Yet it is no surprise but nonetheless sad to learn that for decades deaf children were routinely diagnosed as mentally retarded. Still today, they are often considered to have diminished capacity relative to their hearing peers, even when we clearly know that they can flourish if given the appropriate education and experiences. (p. 33).

Consider that, for the deaf which we think we’ve come, arguably, to understand and accept, of how far behind we are in autism to apply this level of consideration. Think how far behind! Thankfully, a small pool (and I hope a growing one) of researchers are taking up this call. In Steven Kapp’s (et al) paper Deficit, Difference of Both? Autism and Neurodiversity, there is also a call to discover the state of autism acceptance and “potential areas of common ground in research and practice regarding [how] autism [is] discussed.”

Scientists, working with the community, can help stakeholders with competing agendas make informed choices between rights, responsibilities, and needs at personal, social, and political levels by affirming that diverse societies respect multiple perspectives.

I’d like to see us all work towards the question of how to nurture autistic strengths and learning and balancing the real need to cope in this world as a minority, as well as continuing to value autistic contribution and being in society.

A Whole Better World
Autreat, May 2000,
Clay Adams

I can imagine a whole better world,
Where people don’t laugh at each other’s pain
A world where the sun shines on every one
And one’s well-being is everyone’s gain

Must we, in fact, feed off each other?
Fool the unwary, to sell our wares?

After The Wedding

Filed Under (Ableism, Adam, Advocacy, autism, Autism and Intelligence, Development, Research, school, Sensory Differences, Transitions) by Estee on 12-06-2012

Adam happily skipped down the aisle at his sister’s wedding. He didn’t sleep the night before, mind you, so I had to go with the flow. The question I asked myself was what was really important in this affair? First Adam, of course. If he were to have fallen apart that day, I would have aborted the mission. That didn’t happen so my goal for him was to be calm and walk down that aisle. I was going to forget the photographs but he seemed happy enough to leave for the wedding on schedule. I made sure we arrived at the tail-end of the photographs to avoid long waits. I prepared his bag of tricks — food, fidget toys –and a schedule on his iPad using the First Then app. I used the photographs from our visit to the facility earlier in the week, and wrote sentences from the time we entered to the end of his wedding duty. I recorded my voice with the pictures, and he loved that. He reviewed it many times before we left the house.

Arriving to the photography session, there was excitement and fuss — tightening his bow tie, buttoning his jacket, and he didn’t like that much. He wasn’t given any processing time. Then, Adam was lugged by the hand from this photo to that. He wasn’t happy with that either, but maybe there’ll be a couple of decent photos. Dad walked him down the aisle for practice and I asked if he could be excused from the formal rehearsal thereafter so he could have a quiet room and a break. This was successful. He ate some food, sat on the couch and seemed very happy. I think this was his chance to process where he was and that he was finally at Serena’s wedding, for he indeed said “Serena, Serena…” followed by a giggle.

Then we were asked to vacate the groomsmen’s room. We walked about the facility slowly, saying hello to people coming in. We were to wait around near the room where the wedding party would gather prior to walking down the aisle. Dad came when it was time to collect Adam and I took my seat.

Finally, what felt like a mile-long aisle, Adam walked down in the hands of his two older brothers and I fought back my tears. He started to skip a bit…Adam likes skipping more than walking. His brothers brought him to me and he sat down for the rest of the ceremony until the end, noshing on lollipops and a bag of grapes. He was picked up and driven home after the ceremony as I knew he would be exhausted from a sleepless night. Otherwise, he might have stayed at the party a little longer.

Later that evening, I looked at my phone and read “ambulance.” I quickly rose from my seat and called home. My parents, who took Adam after the ceremony, were with him at my home. They heard a sudden crash and went to check on Adam. He seemed okay so my father looked out the window. Their car was totaled in my driveway from an elderly man who lost control of his car (and tried to get away). I was so relieved to hear that no one was hurt, but I felt sick to my stomach that they had helped Adam out to make it possible for all the intricate wedding scheduling to happen, only to have their car wrecked. I know, it could have happened anywhere, but still.

~

The wedding is now over and after decompressing, Adam is back in school. I’m going through reports as I prepare for this summer and his next school year, as I will be returning to grad school in September in Critical Disability Studies, hopefully to help Adam, and to answer the many questions and issues I raise on this blog. There are so many that I would like to make a contribution to the body of work on what kinds of help autistic people need in order to contribute to society as autistic people. I thank many autistic people for helping me with that question when I first created The Autism Acceptance Project. These conversations happened years ago when I was seeking input from autistic adults in creating an autism organization. Many parents want to get involved and for good reason. Yet, I thought that the charity models weren’t supporting autistic individuals well, and wanted to discuss this. I feel it’s now time for me to go back to the drawing board and contribute to the science.

~

Adam recently had a series of standardized academic tests. The testers acknowledged in the report that these standardized tests do not accurately reflect Adam’s “true potential,” and they have ordered the Ravens for him. Still, the report puts him in well-below average ranges. I don’t think there is any typical parent, who came home with a report card without at least a B, who hasn’t inherited the same feelings of what it means to be “successful.” My little guy who stims a lot, who can’t sit still, was placed in a little room for three days and expected to work for two hours at a table — while some painful teeth were coming in. While the testers acknowledge the many limitations for testing autistic folk like Adam, changes have not yet been made in terms of how we evaluate the autistic population. The testers stated that there should be computerized tests and I would add, there should be a sensory room and tools such as seating pads, and even a trampoline if necessary.

It was suggested that Adam have lots of breaks in school, use the iPad and computers for learning, yet the tests to determine autistic ability, intelligence, as well as areas that need to be further supported, don’t yet accommodate this learning style. They noted that in some areas Adam functions at a 13-year-old level and in others (like Math) at a grade one level. When I was in the testing room with him, I also realized that the many items they were asking Adam about, have NEVER BEEN TAUGHT to him. How, I thought, could he answer so many questions accurately when no one has even taught him these very specific things? I realize that no matter how much I talk about this, my comments seem to fall on deaf ears. Yet, this is an important link and a reflection of how Adam can teach himself. In this alone, we have to acknowledge an autistic learning pattern and ability to learn overall. In particular, Adam had excellent pattern recognition, and he knew sophisticated words that I know he has never been taught in school. Since he’s been very little one can always catch him reading a book, although I think most people don’t believe he was actually reading.

When I hear on the news of an autistic person having disappeared with a description of their functioning level, it frightens and disturbs me. I cringe when I hear that the person “functions at a five-year-old level” when they are 16. True, there is real disability here. But if I know Adam well, and I do, watch him type what he wants for a YouTube video, or something on the Internet. Listen to the teachers who also see Adam “perform” with 100 per cent accuracy one moment, only to unravel to “a four-year-old level” the next. That to me is the nature of Adam’s autism. Having people understand the variances is so difficult and it’s tempting to want to give up. Making sure Adam is not placed in a class where he puts the same puzzle together seems to take enormous fortitude. We have to continue to serve, to address disability not as something to be ashamed of, but respected and accommodated, while ensuring autistic people receive the education that they rightfully deserve. This has to start at understanding not only the impairments but in the pathways and methods that are successful to learning. In addition, our charities and scientists have to work harder in promoting the value of the autistic population. Without this premise, we won’t be able to accomplish our important goals. Going from theory to practice takes a long time. We also have to also start in the testing room with the tools we have now.

The Purpose of Parenting Studies?

Filed Under (Family, Inclusion, Joy, Parenting, Research) by Estee on 29-05-2012

At IMFAR and with other researchers I meet, I am confronted with many requests to participate in “parent studies.” The purpose is to study what levels of stress, and how different it is to parent and autistic child. I am reticient to participate. What about parenting are the researchers trying to find? Are we attempting to affirm that life is harder with an autistic child? Of course, we have to ask what the researchers are hoping to find. Is the purpose to support parents, the autistic child, or both? Or is there a more insidious angle to this kind of research, that is to say, that autism itself is the problem? I know, that may sound blunt and provocative, but think about it. To what end are we really getting on with the business of helping autistic people contribute to society as autistic people? How are we really helping autistic people and their families with their quality of life?

Honestly, I don’t see the purpose in trying to affirm that life might be tougher with an autistic child in it, and I’ve written about that with the unconfirmed (by research) assumption that autism is the cause of increasing divorce rates here. All I know is that when Adam is happy and accommodated, I am very happy. If he is excluded, I too feel isolated. What is it that makes the perception of life harder, then? What about society could assist in supporting us all? These are some of the questions I wish the research would tackle.

A few parents and some commenters on other blog posts have stated that some parents, myself included, are in a state of denial by insisting that we find joy in our children. Asserting that your child is a joy is not a denial of the challenges that we all face. The act of assertion is the affirmation that our children’s lives are important and valuable. On all counts, Adam has been my greatest joy. Yes, I get stressed in trying to understand his discomfort. No parent wants to see their child in distress, and we can focus on that in some of our research.

Most of the stress we faced lived in incompatible circumstances. Once I could see that our environment had to be calm, and that there was no time for compromise with people who had no interest in supporting us, life became a little smoother. I’ve had four years to wrap ourselves in the warmth of the people who really care about us. Let’s face it, our plates are full and we don’t have time for everyone. Energy must be spent wisely.

I dont’ like to give advice, but I’ve had a few thoughts over the past few years about parenting an autistic child. If there is parenting stress, perhaps evaluate the other underlying factors that could be relating to the stress instead of just focussing on the autistic person in the family. This would include all of your relationships, including the one with yourself. Think about how you communicate about autism, and consider changing your thought patterns, attitude and language surrounding it. I know that as a mom of Adam, I’ve had to work, and continue to work, daily at my expectations and putting them in check. I look at my own anxiety levels and what I do to add or detract from the stress. Even when I’m at my limit, I accept bad thoughts and let them go through me. I express them in private and then my head is clear again to see Adam for the beautiful boy he is. My attitude is very important. Loving and accepting Adam has also helped me to love and accept myself, which wasn’t (and sometimes still isn’t easy). Yet what’s the point in having a double standard?

When others have accused me of being in denial of other people’s stress or autism itself, I came to learn that my approach was my way, the way I was raised and my survival mechanism. There is absolutely no one who can tell you how you should raise your autistic child, and the assistance out there is on the journey as much as we are as parents. And, by the way, we all have a right to enjoy our children for who and what they are! It is up to us completely to advocate for our children — our right to have and enjoy them, to be included in society, for a good and suitable education, for accommodation, for respect, equality, and excellent opportunities and living environments into our children’s adulthood. There’s no getting around it and no excuses. It sucks some days, but we can’t complain. We have to stick together and stop the urge of research and the typical population to pity us. Pity won’t get is the services we deserve. If we continue on the path, we’ll just get the dusty old van and the group home. Not to knock some of the individuals there who sacrafice and provide for our children on a daily basis. It’s just that I think people with disabilities don’t deserve dusty vans and the poverty line.

I just think we all deserve better. Parents feel stress because of the lack of support, accommodation and acceptance. We feel it because we are stared out in the check-out line, or at the park, or while waiting to get into school. We feel it when someone marks “retard” on the picnic table outside our kid’s school. Can you add ot the list? Yes, our children indeed have challenges. Stigma makes these challenges a whole lot more difficult. Now think of how the autistic person must feel.

On the up side, there are many couples and single parents who have found their niche and who have pulled together with stronger families because of the challenges that an Abelist society brings to us every day. There are friends who really pull for us and who believe in us as a whole, not a fractured, family. There are people rooting for us in every way. Here’s where to put our focus.

I have only one child. Sometimes I think the time I spend on Adam may be like raising a group of children, but he’s worth it. He’s worth doing the IEP, organizing programs, doing advocacy work, managing teams, people because there are so few autism services and programs suited for the autistic person. It’s like inventing the wheel over here. I don’t have to manage the jealousies of same-aged siblings who don’t understand why so much more time is spent with the special-needs child in the house, and even the sudden “adult” responsibilities they may feel. I know of many parents who do. We all have our own package of issues, though.

I hope that researchers doing parent-studies have these points in mind. Society’s view of disability has a great deal to do with how we parent, how we view our lives, how we convey autism and disability to our communities and future generations, and how we are supported. It’s not the fault of autism or the autistic child. We must be so cautious in slanting any research in this direction.

My First Impressions of IMFAR 2012

Filed Under (Research) by Estee on 18-05-2012

This is my first IMFAR 2012 in my hometown, Toronto.

Let me just say, I think that everyone who attends IMFAR should attend AUTCOM and AUTREAT and be exposed to autism conferences run by autistic people. Temple Grandin, in receipt of her Advocate Award yesterday stated “Researchers, you must do more work in sensory processing and visual thinking in order to improve our quality of life.” She noted that there are already hundreds of papers on Face Recognition.

I want to extend that thought. While we are trying to understand autism, we are not much advancing the understanding of how autistic people think and learn and how we can assist autistic people live and thrive in our society as autistic people. As I sit watching sliced brains all it up in orange, blue and yellow, I twitch. Autistic people are referred to as THE OTHER.

“Research provides the foundation for reports about and representations of ‘The Other.’ In the colonial context, research becomes an objective way of representing the dark-skinned Other to the white world. Colonizing nations relied on teh human disciplines, especially sociology and anthropology, to produce knowledge about strange and foreign worlds. This close involvement with the colonial project contributed, in significant ways, to qualitative research’s long and anguished history and to its becoming a dirty word.”

(From: The Landscape of Qualitative Research, Norman Denzin & Yvonne Lincoln).

There are quantitative and qualitative studies here, and I’m very interested in the how autistic people are being studied. The research uses the typical population for comparative analysis. Autistic people are being measured against the typical population therefore cannot be seen as they are. All I’m learning is what I’ve already been told over and over again: autistic people cannot measure up in the same way and manner as typical people, and that we view typicality and normalcy as our goal.

The studies here that I’ve seen use groups with High Functioning Autism, a term which is highly interpretive. Let’s assume, however, that this HFA group must be verbal and must be able to function fairly close to the typical population. This immediately rules out my son who is has limited verbal ability, has pronunciation differences, and some idiosyncratic language. Also, the study groups would exclude him becuase he has many neurological “tics” and “stereotypy,” and has very limited “typical social skills.” As such, it would eliminate the contributions of most of the autistic population who contribute through writing, music, art and more. What of autistic narration? How is that important and valuable instead of merely fascinating? What kinds of insights do autistic people have that some of the typical population may not? It is hard for me to find such presentations here at IMFAR.

Today I did attend sessions on Brain Imaging and fMRI Cognition, Motion Perception and Function and Reward Processing. The most valuable presentations, to me, were two:

Using Visual Strategies to Remember Verbal Information: An fMRI Study of Working Memory in Children with and Without Autism, E.J. Carter, D.L. Williams, J.F. Lehman and N.J. Minshew. and,

Increased Attentional Activation During Reading in ASCAn fMRI Study of Visual Language, J.R. Cooperrider, J.A. Neilsen, J.S. Anderson, A. Froehlich, M.B. Dubray, A. Cariello, A. Alexander, E.D. Bigler, N. Lange, and J.E. Lainhart.

While I’m uncertain of the reliability of fMRI studies, I am very interested in the results. In summary, autistic people have compensatory reading and decoding strategies. I asked the researchers if they’ve ever compared the autistic population to the dyslexic one (one that I tend to do). I am often tired of the comparison of autistic individuals to the typical population as the only measure.

Rather, because we know that the Dyslexic community faced many social challenges including marginalization, stigma, exclusion, and becuase it took the school systems a while to understand Dyslexia in order to teach dyslexics, how can we study and understand autistic visual perception and conceptual understanding and the way they utilize the visual in order to decode language and the verbal?

I’m off to the “Stakeholder’s Luncheon” now where Stephen Shore will be one of a few speakers. There are a few autistic individuals here, but nearly not enough.

How do we get these scientists at IMFAR to collaborate with autistic people more? How do we move from using autistic people as “subjects” to including autistic people as collaborators?

We have a lot of work to do. Apologies in advance for any typos as I sit in a crowded foyer.

Why Every Minute Is Not Therapy (or a short case for why it shouldn’t be)

Filed Under (Acceptance, Activism, Advocacy, Autism and Employment, Autism and Intelligence, Contributions to Society, Critical Disability Studies, Discrimination, Inclusion, Research) by Estee on 08-09-2011

The gods had condemned Sisyphus to ceaselessly rolling a rock to the top of a mountain, whence the stone would fall back of its own weight. They had thought with some reason that there is no more dreadful punishment than futile and hopeless labor.

I heard this term used by someone today. It is often used in ABA-speak — that every minute of every day must be a form of “therapy” for the autistic child. Some believe this is necessary because there is a belief that autistic children are not learning unless they are doing it in a way that that we can understand…measurable. This made me think of Sisyphus and the futile attempts we make in trying to normalize an autistic person.

The truth is, we take comfort in measures. Yet as I wrote in my essay/presentation The Mismeasure of Autism, we cannot hold autistic people up against the same measures as we do of people with typical people. Not all brains are wired in the same way.

For example, women have quickly discovered that when we compare ourselves to men in the workplace, or try to behave like men, we fail. In pretending to be like men, we can undergo a great deal of stress because we are working against our nature. When we are valued for the manner in which we can accomplish the same tasks as men, but in our own way, we discover that our differences can be beneficial to the workplace. Women to men are as autistic people to neurotypical ones: different and equal.

I was reminded of the contributions of those who are different from the film titled Journey Into Dyslexia, which profiles accomplished people with dyslexia. The trailer can be seen by clicking here.

During the film, dyslexic individuals describe their trauma with the education system — how no one appreciated the unique wiring of their brain and tried to make the dyslexic students learn like typical ones. I was so saddened by the life-long adverse effects this had on them.

In another segment, a researcher discusses how dyslexic individuals have unique abilities and pattern recognition and explain that our world would not be the same without such thinkers. This reminded me of the research being done which shows advanced perceptual ability in autistic individuals of all functioning levels.

It should be said that in the film about dyslexia, individuals do not appear disabled. In autism, this isn’t always the case. While some individuals do not physically appear different, others are distiguishable by their various eye-gaze, facial expression, gait and idiosyncratic body movements (which serve most often to regulate or feel the body in space), referred to as self-stimulatory behaviour. I thought to myself that in our (still) disabled-adverse society, it is easier to accept dyslexic people, that is, sadly easier to accept people who do not have any obvious appearance of disability. Yet, dyslexics did not always have the same recognition and status. Dyslexic students were labeled and marginalized — called stupid — and not much was expected from them in the future.

Time changed that. Studies of the brain and achievements and activism by dyslexic individuals changed it too. So I had to wonder, as I always do when I watch such movies, why it is taking so long for the autistic community to receive such recognition and access? There are scientific studies that demonstrate advanced perceptual abilities, patterning skills in autistic individuals despite the labels of “functioning levels.” There is anecdotal evidence that autistic individuals are exceptional employees — reliable, honest, able to do detailed and repetitive work, and perhaps even able to design world-renowned facilities (think Temple Grandin).

Still, we as an autistic community (meaning parents, researchers and autistic people) tend to discount the mounting evidence. While I don’t wish to go into yet another lengthy about high and low functioning labels, but I will reiterate that they are unreliable in determining intelligence levels. Not all intelligences can be measured the same way, as demonstrated by many of the neurological differences which now have labels out there. This is also explained brilliantly in the film.

We can learn from our fellow disability communities. We can turn to ones, like the dyslexic community, in learning how to advocate for autistic individuals. We can definitely acknowledge that it is natural for the human speicies to have differently-wired brains and that these “different” brains are integral to the survival of our speicies (watch the movie for an advanced argument on that point).

That is the reason why the idea that “every minute should be therapy” for the autistic person is a form of discrimination. Underneath the premise is the idea that autistic people need to learn and act like those who are different from them. I cannot imagine the anguish of that experience, and every day I try to feel what Adam must have to go through and what he may come to say of it when he grows older.

Before the hyper-programmed generation (that is, my generation), we had many bored moments when our parents let us figure out what to do on our own. We stared at clouds, talked to ourselves and created laboratories out of our mother’s cosmetic bottles and the contents therein. When I look back, I remember creating many imaginary worlds. Adam’s chatter is considered abnormal to many behaviourists, although I’ve never stopped him. I’ve now learned how valuable that self-chatter is to autistic children for language acquisition.

Compare the way we let typical children play to the existence of the autistic child today. It is said that autistic children can’t learn on their own, let alone imagine, without our intervention. Autistic free time is not valued. Autistic nature is not valued. Autistic learning is not valued and the autistic person is more often than not, underestimated.

I tend to use the story of how Adam taught himself how to read and count in an argument such as this. A more recent example I would use is how he has taught himself how to search for what he wants on the computer. You see, those are the things we see and measure, but I wouldn’t be able to determine how he came to do it. I can’t measure the exact process he went through. I can wait until he is able to explain some of it to me, unscientifically maybe, and I am certain now that he will as his verbal and typing skills catapulted again this summer along with his long days in the fresh air.

If I had turned each and every one of Adam’s minutes — nay existence — into “therapy,” not only would I become completely exhausted and dismayed, but I’m quite certain that Adam would not be has happy and as well adjusted as any young autistic individual can wish to be. He will have his complaints, I am certain. He is up against so much more than I have ever been.

I am thankful for my attitude of late and for the balanced approach that time and experience has given us. It is not always easy to maintain this attitude consistently in our community where autistic children are not taught to their needs or potential, let alone accepted into many schools and taught well. For many autism parents, it is the fear of the future that is the driving force behind the idea that every moment needs to be a therapeutic one. I completely understand that fear.

It is in these very moments when we need to turn to autistic adults and call upon all of our autism societies to spotlight the achievements of autistic individuals of all functioning levels, and their contributions to society. In autism we have Temple Grandin, Vernon Smith (Nobel Prize Winner), Stephen Wiltshire, Daniel Tammet, Donna Williams, Michelle Dawson, Matt Savage, Amanda Baggs, Larry Bissonnette, and so many more autistic contributors. In so many of their stories, we have heard how they have learned and achieved by virtue of their autistic brains and societal accommodation, not from minute-by-minute therapy.

We should do everything to celebrate the achievements of our comrades, as this will enable better services and accommodations for the next generation of autistic people to contribute. If we do not stand up for our own community, what chances will our children have to prove themselves? What chances for acceptance?

Everyone has something to contribute.

The Gateway Project

Filed Under (Research) by Estee on 15-11-2010

Autistic Self-Advocacy Network

Be Included in Autism Research

The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) and the Gernsbacher Lab
believe in research WITH autistic adults, not just ABOUT autistic adults.

Together, we have created the Gateway Project, which is an online gateway to research that

–  encourages the inclusion of autistic adults in matters that affect them;
 –  includes autistic adults as equal partners in research about autistic persons;
 –  answers research questions that are considered relevant by the autistic community;
 –  uses research findings to effect positive change for people on the autistic spectrum.

The Gateway Project needs your help, whether or not you are on the autistic spectrum.
If you’re at least 18 years old and have access to the Internet, you can participate in a series of online research
studies. Upcoming studies address topics such as healthcare, well-being, and problem solving.

To participate in the Gateway Project:

1. Register online for a Gateway account starting at http://www.thegatewayproject.org
2. Take the online Gateway Survey. The survey takes about 20 minutes to complete.
3. You will be notified by email when new studies for which you are eligible become available.

Completing the survey entitles you to a 1 in 25 chance to win a $25 Amazon.com gift certificate.
If you would like to learn more about the Gateway Project, you can

Go to the Gateway home page at http://www.thegatewayproject.org
Send an email to info@thegatewayproject.org;
Make a telephone call to Dr. Morton Ann Gernsbacher at 1-608-262-6989 or Christina Nicolaidis at
1-503-494-9602

OHSU IRB # 3762; UW IRB# SE-2008-0749

Principal Investigators: Morton Ann Gernsbacher, PhD, University of Wisconsin–Madison
Christina Nicolaidis, MD, MPH, Oregon Health & Science University
Please pass this information along to your friends!

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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.