Un Nuevo Chile que Protege y Empodera a las Pequeñas y

In 1976, the Union of the Physically Impaired Against Segregation (UPIAS) published Fundamental principles of disability (UPIAS, 1976). This paper advocated for the first time a separate definition of impairment from disability:

Impairment as lacking part of or all of a limb, or having a defective limb, organ or mechanism of the body; and disability as the disadvantage or restriction of activity caused by a contemporary social organisation 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, 1976, p20).

UPIAS is credited with establishing the principles that led to the development of the social model of disability (Tregaskis, 2002). Introduced in 1983 by Mike Oliver, the social model of disability conceptualises disability as the oppression by our society of persons with impairments (Oliver, 1983). As described by this author, under this model, disability is located within the social environment rather than the individual. The attitudes of individuals in society and the environmental factors that these inform, result in the disablement of persons with impairments, through presenting barriers to their inclusion in everyday life. The social model of disability transfers the responsibility for making accommodations to overcome these barriers from the individual to society.

From my perspective, the aim of research that epitomises the social model of disability is, therefore, to transform the life of an individual by removing barriers to full participation in the community, in leisure, education, and employment. Thus the social model of disability that is considered the ‘big idea’ of the British disability movement challenges the view that impairment is a tragedy for the individual and the family (Peters, 2008).

In their publication, UPIAS (1976, p20) went on to say, “Physical disability is therefore a particular form of social oppression”. The social model of disability was, therefore, originally conceptualised as a means to understanding physical impairments (Tregaskis, 2002). It was the neurodiversity movement that first extended the social model of disability to understanding cognitive differences including autism that I now examine.

2.4.1 The neurodiversity movement

Judy Singer, a sociologist and person with autism, originally coined the term neurodiversity (Singer, 1999). Singer asserted in her work “The ‘neurologically different’ represent a new addition to the familiar political categories of class/gender/race and will augment the insights of the social model of disability” (1999, p37).

persons with autism (Jaarsma and Welin, 2011). Sinclair, an autism-rights movement activist and a principal contributor to the online autism community in the 1990s, has been credited with making a significant contribution to its development (Boundy, 2008). Subsequently, persons with other labels of neurological difference such as dyspraxia, dyslexia, and attention deficit hyperactive disorder have also embraced and contributed to the development of the neurodiversity movement (Jaarsma and Welin, 2011). Runswick-Cole writes:

The neurodiversity movement offers a counter narrative to the ‘autism-as-disorder’ model outlined above. Neurodiversity is defined as a biopolitical category concerned with promoting the rights of, and preventing discrimination against, people who are neurologically different from the ‘neurotypical’ (or the non-autistic) population (2014, p1120).

The neurodiversity movement recognises different human neurotypes, of which autism is one example, as a natural variation of the human (Jaarsma and Welin, 2011). This movement that seeks social justice “draws its roots from a social model of disability” (Kreck, 2013, p11) and uses it to make a distinction between the biological nature of autism and the social oppression by our society of persons with a different neurology such as autism (Runswick-Cole, 2014). Authors in the published literature who support the neurodiversity perspective of difference have adopted the social model of disability when researching the lived experience of persons with autism (Hodge, 2012; Chown, 2012; Martin, 2015).

The social model of disability isn’t a static concept and has been subject to review and critique by academics (Shakespeare and Watson, 2002; Thomas, 2007 and Owens, 2014). Beardon (2017) in his most recent work has presented a reconsideration of the social model of disability that I now explore.

2.4.2 The disadvantage of persons with autism

In Autism and asperger syndrome in adults (Beardon, 2017), Beardon introduced the following principle, “autism + environment = outcome” (Beardon, 2017, p11). The outcome that is whether the person with autism experiences advantage or disadvantage, is the product of how they experience the world and the environment they inhabit. The author goes on to describe that persons with autism, the minority group in society, are at a higher risk of being disadvantaged compared to the PNT, the majority group or their environment. Beardon argues that the lived experience for persons with autism in a PNT society that doesn’t readily understand them does, therefore, often result in a disadvantaged outcome (Beardon, 2017). In developing this principle Beardon wrote:

Much of the literature debates whether autism should be viewed as a disability, a difference, something that should be cured, or maybe something that can be seen as an advantage in some circumstances. In reality, autism is different for each autistic person, while there are some common characteristics (2017, p17).

Beardon (2017) goes on to argue that viewing persons with autism as impaired, disordered, or disabled is problematic particularly when many persons with autism don’t identify with such labels (O’Neill, 2008; Schafer, 2009; Downing, 2014; Shattuck et. al., 2014; Rutherford, Butcher, and Hepburn, 2016) and that the lived experience is different for each person with autism. Beardon writes (2017, p1), “There is no such thing as a ‘typical autistic person12’”. Other authors have also argued that when you have met one person with autism, you have only met one person with autism (National Autistic Society, 2016; Chown, 2017). Similarly, Orsini and Davidson (2013, p12) refer to the “kaleidoscope complexity of this highly individualised relational (dis)order”. I agree with these authors that each person with autism is a unique individual whose lived experience is exclusive to them. In addition, for me, how a person with autism

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interprets and responds to the world not only varies between individuals but within individuals over time13. Also, as stated by Gerland:

In addition to the triad of impairments you could say that what characterises the autism spectrum is a significant unevenness in development. This means that in practice a person can be of many ages. The individual can in one area be far ahead of their peers, in another just like their peers and in a third area far behind their peers (Gerland, 2013, p144).

Having examined the social model of disability understanding of autism I now summarise how this has influenced my theoretical position.

2.4.3 Summary

From the perspective of many academics and as I have outlined in relation to my perspective, the social model of disability ideology posits that persons with autism are disabled by the attitudes of individuals in society, the environmental factors that these inform, and the social barriers that result (Oliver, 1983). The neurodiversity movement originally extended the social model of disability to understandings of cognitive difference and positions the autism neurotype as one of many natural variations of the human (Jaarsma and Wellin, 2011). Furthermore, as a result of the PNT society that persons with autism inhabit, that doesn’t really understand them, persons with autism are recognised as frequently having a disadvantaged outcome (Beardon, 2017).

This alternative understanding of autism, for me, presents possibilities for an enabling narrative of sociality and friendship for persons with autism that facilitates a challenge to the binary of autistic and PNT sociality and, therefore, to the dominant discourse that persons with autism find it difficult to make friends and maintain friendships (e.g., Frankel and Whitham, 2011; Locke, Kasari, and Wood, 2014). The social model of disability thinking, therefore,

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I acknowledge that this interpretation and response to the lived experience also varies for the PNT.

aligns with my aim for the outcome of my research to contribute to resolving the conundrum I have observed in my son and found support for in the literature.

I acknowledge that the social model of disability has been subject to criticism, e.g., from disability charities, medical professionals, and academic researchers including persons with disabilities and autism and I recognise that persons with disabilities remain subject to social oppression (Tregaskis, 2002; Shakespeare and Watson, 2002; Oliver, 2013; Mallet and Runswick-Cole, 2014). Oliver (2013), the author credited with conceptualising the social model of disability, has argued he didn’t “claim that the social model was an all-encompassing framework within which everything that happens to disabled people could be understood or explained” (2013, p1024). However, in the context of my research, the social model of disability ideology presents possibilities for an enabling narrative of sociality and friendship for persons with autism that aligns with my theoretical position.

As I have previously stated, the perspective of many academics and, for me, the dominant understanding of autism in our society is based on the medical model of disability ideology that prefers and privileges PNT sociality and friendship over that of persons with autism. This predilection has arisen due to the power imbalance between the majority PNT population and persons with autism, a minority population that results in their disadvantaged outcome (Beardon, 2017). One of the elements of critical autism studies (CAS) is considering how power relations influence autism research (Davidson and Orsini, 2010). CAS presents another way of understanding autism that I argue supports the aim for the outcome of my research that I now examine.