Tuesday, December 17, 2013

200th Post! Why is Neurodiversity Useful?

Neurodiversity is a term that was coined by Australian social scientist and autism advocate Judy Singer. In her 1998 thesis, she wrote: “For me, the key significance of the ‘Autistic Spectrum’ lies in its call for and anticipation of a politics of Neurological Diversity, or what I want to call ‘Neurodiversity.’ 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.”[1] Similar to the way biodiversity is discussed as critical to the stability of the ecosystem, neurodiversity is considered to be critical for human and cultural stability. In other words, Autism Spectrum Disorders (ASD) and other neurological differences should be a part of our community and, thus, neither cured nor subject to intense rehabilitative or normalizing efforts. Before I discuss how neurodiversity is useful to my work and to ASD-related professions, I want to quickly review ASD and my current project for the Neuroethics Scholar Program.
Source: Cafe Press
ASD is traditionally defined as a neurodevelopmental disorder that affects a person’s social and communicative style and includes frequent displays of specific behavioral patterns.[2] There is a huge range of autistic expression, from significantly impaired to subtle displays of autistic characteristics. As the Neuroethics Scholar at Emory’s Center for Ethics, I am working on a project at the Marcus Autism Center exploring how to communicate the results of future infant screeners for ASD to parents. This project was described in The Neuroethics Blog on October 1, 2013. A neurodiverse perspective informs my work in two important ways: shaping the language I use to talk about ASD and ensuring I maintain a focus on the quality of life for ASD individuals and their families. I believe that neurodiversity can be similarly important for all professionals working with and studying ASD or related disabilities.

In American civil rights movements, there has always been a linguistic focus—people pay attention to the ways individuals with different racial, gender, sexual, and ethnic identities are labeled and described. This language changes over time, becoming more appropriate and representative. The disability rights movement also works to change the way disability is spoken about. Neurodiversity is a part of this movement, and so advocates are thinking about and promoting respectful ways to talk about ASD and related disabilities. As a whole, the disability community argues for the use of a language of difference, not deficit. For ASD, this means saying individuals have different social interaction styles, rather than “deficits in social communication and social interaction,” or prefer adhering to a specific routine, rather than “inflexible adherence to routines.” The statements communicate the same thing, however the latter is linguistically demeaning and suggests autistic people are broken or somehow less than those who are not autistic.

My use of the phrase ‘autistic people’ is also informed by neurodiversity. In the field of disability studies, there is an ongoing conversation about the use or nonuse of ‘people first language.’[4] This approach attempts to verbally demonstrate that a person is more important than the disability by using phrases such as ‘person with a disability’ or ‘person with autism,’ thus rejecting the notion that a disability subsumes a person’s entire identity. This inaccuracy is most pronounced in phrases like ‘an autistic’ or ‘autistics.’ However, there are many self-advocates who prefer the use of the term ‘autistic person’ (and also ‘disabled person’) because autism is a central element to identity formation and the phrase ‘people with autism’ seems to serve as a reminder to others that autistic people are, in fact, people. As a result of many interactions and conversations with friends and colleagues who are autistic self-advocates, I now rely primarily on ‘autistic people’ with the understanding that this phrase is meant to respect the identity of autism. 

Source: Zazzle

In this way, neurodiversity draws attention to the ways we describe autistic people that serves to stigmatize and separate this community from the non-autistic community. Eradicating this stigma by focusing on the improvement of the lives of autistic individuals rather than finding cures for or rehabilitating autism as a primary tenet of neurodiversity. This is a fairly controversial topic in the ASD community. Many parents believe that neurodiversity fails to account for autistic children who are significantly impaired. Working towards acceptance, they argue, does not help them or their children who are significantly impaired and may be engaging in self-harm, difficult to communicate with, or having persistent sleep or eating difficulties. These parents want to find ways to alleviate the most significant autistic characteristics because they and their children are living stressful and exhausting lives.

I argue that neurodiversity is useful for these families as well. Neurodiversity does not promote allowing children to continually harm themselves or families to go without sleep for days out of respect for the neurological difference of the child. Neurodiversity means improving the quality of life for autistic people and their families. An autistic person who has not developed a reliable communication method, verbal or otherwise, would benefit from learning how to get her preferences, needs, and emotions expressed. This often does involve educational techniques and interventions. Similarly, some autistic people want to work on their social skills with explicit social skill instruction. This, however, does not mean that all autistic people should be subject to intense social skill instruction regardless of their desire to make and keep friendships.

Focusing on the quality of life of autistic individuals and their families does not mean leaving them alone until the surrounding community develops a more tolerant and accommodative environment. It means discovering ways to ensure that the autistic individual has a primary role in his life decisions. It means ensuring autistic individuals are employed in environments that respect and utilize their differences and skills. It means setting up school and adult environments where autistic individuals can thrive, feel comfortable, and learn. It means finding ways to support families and caregivers of autistic children and adults so that they can focus on loving and supporting the autistic people in their lives, rather than the frustrations of finding and fighting for appropriate and supportive services and environments. 

For my current project, relying on neurodiversity will result in suggestions to ensure that telling parents about the possibility of a later autism diagnosis is done in a supportive and realistic manner. This includes not suggesting that the introduction of autism into their lives will destroy the family that they want or expect and that information about ASD is provided using language that is respectful of autistic people and their families. This information should be provided in a reciprocal, ongoing dialogue about the future of a child and the family that answers caregiver questions and directs them towards useful resources and services for both the child and entire family.

For me and my work, neurodiversity means working towards a community that respects and interacts with autistic people and people with intellectual and developmental differences. But it also means that, while working towards this goal, researchers, clinicians, and educators can and should focus on developing immediate and sustainable ways to improve the qualities of life of autistic people and their families. Neurodiversity should be presented to professionals, parents, and the public as an alternative narrative about ASD that could supplement the more medically-oriented, cure-focused way of thinking about ASD. Thinking through these approaches is where neuroethics, bioethics, and neurodiversity can come together. Although the approaches seem contrastive, there is an important common ground—that of ensuring autistic individuals and their families lead fulfilling, rewarding, and uncomplicated lives.

[1] Singer, Judy. (1998) Odd people in: The birth of community amongst people on the "Autism Spectrum". A personal exploration of a new social movement based on Neurological Diversity. Faculty of Humanities and Social Science, University of Technology, Sydney. 
[2] American Psychiatric Association. (2013) Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Publishing.
[3] Ibid.
[4] Shapiro, Joseph P. (1993) No Pity: People with Disabilities Forging a New Civil Rights Movement. New York: Three Rivers Press.

Suggested Resources:

1. Armstrong, Thomas. (2010) Neurodiversity: Discovering the Extraordinary Gifts of Autism, ADHD, Dyslexia, and Other Brain Differences. Cambridge: Da Capo Press.
2. Autistic Self Advocacy Network: http://autisticadvocacy.org/
3. Disability Studies Quartetly Special Topic: Autism and the Concept of Neurodiversity (open source): http://dsq-sds.org/issue/view/43.
4. Jaarsma, P & Welin S (2011) Autism as natural human variation: Reflections on the claims of the neurodiversity movement. Health Care Analysis, 20(1): 20-30.
5. Kapp S, Gillespie-Lynch, K, Sherman, LE, & Hutman, T. (2013) Deficit, difference of both? Autism and neurodiversity. Developmental Psychology, 49(1): 59-71.
6. Nazeer, Kamran. (2006) Send in the Idiots : Growing Up in Another World. Bloomsbury: Trade Paper.
7. Neurodiversity Weblog: http://www.neurodiversity.com/main.html
8. Saverese, Ralph. (2007) Reasonable People: A Memoir of Autism and Adoption. New York: Other Press.

Want to Cite This Post? 

Sarrett, J. (2013). Why is Neurodiversity Useful? The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2013/12/why-is-neurodiversity-useful.html

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