Saturday, November 3, 2012

Cure vs Acceptance in the context of Neurodiversity – Autistics Speaking

Katharine E Annear writes Cure vs Acceptance in the context of Neurodiversity – Autistics Speaking on AUTAP.COM

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

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

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

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

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

Within the Neurodiversity Movement there is a specific focus on acceptance of diversity and celebration of difference (Baker, 2011; Robertson, 2010). ASAN (2012) argue that:
“Acceptance of difference is essential to understanding, accepting, and benefiting from the contributions of everyone in our society, thus allowing all people to live up to their potential.” (n.p.)

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

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

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

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

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

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

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

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

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

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

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

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

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

A case that further demonstrates misrepresentation and the tension between those seeking a cure, and those seeking acceptance, is that of the “Ransom Notes”. Kras (2010) and Bagatell (2010) outline the case in which the New York University’s Child Studies Centre placed ‘medical advertisements’ highlighting the psychiatric disorders they treat. The advertisment for autism read as follows:
We have your son.
We will make sure he will
not be able to care for
himself or interact socially
as long as he lives.
This is only the beginning.

ASAN organised a grass-roots internet protest including an online petition and letter writing initiative against this campaign. Due to overwhelming pressure and objection from the autism and disability communities, on the grounds that the campaign further stigmatized people with disabilities, the ads were pulled by the agency. In his critique of the Ransom notes campaign Kras (2010) says the following:
“These ads depicted childhood psychiatric conditions as problems that need to be fixed and children with these conditions as abnormal outcasts from society. Their — or, rather, their parents’ — -only hope is to pay someone money to get them liberated from their disorder and returned to normal society. (n.p.)

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

It is interesting to note that people may move along the continuum of attitudes toward cure and acceptance, dependent on their individual circumstances, environmental factors, and the social and political climate. Many parents like Estee Klar stand for the acceptance of their children, but started their journeys with autism, by looking for treatments and possible cures, and to this day use the treatments they have found effective. Even among people with autism themselves there are a variety of attitudes toward cure. Sue Rubin, a woman with autism, (cited in Ortega, 2009) says she belongs to the ‘cure group’, and thinks a cure for autism would be wonderful. Reflecting another point on the continuum, John Elder Robison (2009), a man also on the autism spectrum, believes that a cure should not be a focus but rather there should be a focus on treating the parts of autism that cause the most distress. And Ari Ne’eman from ASAN (2012) states ‘for many of us, the prospect of cure and normalization denies essential aspects of our identity.” (n.p.) This may seem as though he is rejecting any treatment or intervention, but that is far from the case, as he promotes the use of supports that enable the individual with autism to function more effectively in the world, without the need to remove their autism (ASAN, 2012).
Baker (2011) asserts that for society to respond effectively to these issues, through policy innovation, it must embrace multiple understandings of disability including responses to the problem such as cure and acceptance, and despite the obvious tension between the responses, there is value in discontent, as without such interest from passionate proponents issues fall away from public and systemic agendas.

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