Dissertation – Preliminary Issues & Bibliography

Preliminary Issues

The Scottish Strategy for Autism

In the introduction to the dissertation, it was noted that – having taken account of the research done by Knapp et al. (2009), which found that the cost of supporting an adult with Aspergers Syndrome (hereafter “AS”) over a lifetime was in the region of £1.23M – the Scottish Government launched The Scottish Strategy on Autism (“The Strategy”) in 2011.

The purpose of The Strategy was to consolidate work done over the previous decade and to ensure that people “on the spectrum” are provided with required services at every stage of life. Amongst other aspects, The Strategy consists of 26 “Recommendations” and of these, Recommendations 5 and 26 deal particularly with Employment.

In order to deliver The Strategy, a number of sub-groups were set up, including one dedicated to “Employment”. After a later re-arrangement of sub-groups into working groups, the dedicated Employment sub-group was disbanded and employment issues are now required to be considered by all working groups, as they impinge on their area of concern.

For more information on The Strategy, please follow this link:

http://www.autismstrategyscotland.org.uk/

Language In Autism Discourse

Before launching into the body of the dissertation, it was necessary to explain how language related to disability and autism was going to be used, since this is a contentious issue for all concerned.

I approached the issue in this way:

In autism discourse and in discourses about groups in society that might be described as “othered” (a concept defined by de Beauvoir(1949)) , language use is usually significant. In autism discourse, “autism spectrum disorder” is indicative of a belief that AS is an impairment, while “autism spectrum condition” (supposedly) connotes its interpretation as a “difference”.

More vituperative assertions are made about whether a person who has AS regards him/herself as being a “person with Aspergers” or an “Aspergic person”. The former designation uses “person-first language” (Durand, (2014, p.6)) seeing the person before the “condition” but seems to be contrary to language used to describe other groups of people who are apparently not in the mainstream of society (we don’t say “a person with gayness”) and who are “proud” of their “difference”: for that reason many people on the autistic spectrum prefer the latter terminology.

The problem with this terminology though, seems to arise when the specific “conditional” term (“Aspergers”) is conflated with the generic term “disability” and we do say “disabled person” in line with the social model of disability (see below). While this discussion may seem to be a matter of grammar and semantics, it lies at the heart of the social model (“Aspergic”, like “gay”, is an adjective, describing a characteristic and “disabled” is an adverb, describing something that has been done to a person) and a deeper exploration than there is space for here could be fruitful in revealing relationships between groups that have been “othered” by mainstream society. In this dissertation, person-first language is used because it is preferred and is in line with the social model of disability.

(Although person-first language (and what it implies) is important to me, I should note that I think of “Aspergic/Autistic” as being a self-affirming use of language, if it is used to convey my own understanding of AS as being a non-pejorative characteristic, similar to the way I understand “Black” and “Gay” to be used by most people. However, whether these terms are used pejoratively, or unthinkingly, depends on context and on who is using them).

For more information on language use, please follow these links:

http://ollibean.com/2013/09/03/person-attitude-trumps-language/

(the above link found on the Scottish Autism Research Group website)

and

http://t.co/vMlQ5GZMo7

(a link to recent research on language by The National Autistic Society, The Royal College of GPs and The UCL Institute of Education – I have not read this yet).

Having dealt with the two preliminary issues of current autism services and language use, the dissertation proper was begun, and will be reported on in future postings to this website.

Here, I will only add the Bibliography for the whole dissertation: any references in future postings will relate to the following bibliography. It might be of use to those interested in the subjects discussed.

Dissertation Bibliography

American Psychiatric Association, American Psychiatric Association (Eds.), 2013. Diagnostic and statistical manual of mental disorders: DSM-5, 5th ed. ed. American Psychiatric Association, Washington, D.C.

Aylott, J., Philips, K., McLimens, A., 2008 “They would have sacked me anyway”: the real barriers to employment for people with Asperger’s syndrome. Good Autism Practice (GAP) 9, 32–39.

Baldwin, S., Costley, D., Warren, A., 2014a. Employment Activities and Experiences of Adults with High-Functioning Autism and Asperger’s Disorder. Journal of Autism and Developmental Disorders 44, 2440–2449. doi:10.1007/s10803-014-2112-z

Baldwin, S., Costley, D., Warren, A., 2014b. Employment Activities and Experiences of Adults with High-Functioning Autism and Asperger’s Disorder. Journal of Autism and Developmental Disorders 44, 2440–2449. doi:10.1007/s10803-014-2112-z

Baron-Cohen, S., 2002. Is Asperger Syndrome Necessarily Viewed as a Disability? Focus on Autism and Other Developmental Disabilities 17, 186–191. doi:10.1177/10883576020170030801

Brownlow, C., 2010. Presenting the self: Negotiating a label of autism. Journal of Intellectual & Developmental Disability 35, 14–21.

Bryman, A., 2012. Social research methods, 4th ed. ed. Oxford University Press, Oxford ; New York.

Butler, T., Robson, G., 2001. Social Capital, Gentrification and Neighbourhood Change in London: A Comparison of Three South London Neighbourhoods. Urban Studies 38, 2145–2162. doi:10.1080/00420980120087090

Campbell, R., Pound, P., Pope, C., Britten, N., Pill, R., Morgan, M., Donovan, J., 2003. Evaluating meta-ethnography: a synthesis of qualitative research on lay experiences of diabetes and diabetes care. Social science & medicine 56, 671–684.

Dixon-Woods, M., Agarwal, S., Jones, D., Young, B., Sutton, A., 2005. Synthesising qualitative and quantitative evidence: a review of possible methods. Journal of health services research & policy 10, 45–53B.

Dixon-Woods, M., Cavers, D., Agarwal, S., Annandale, E., Arthur, A., Harvey, J., Hsu, R., Katbamna, S., Olsen, R., Smith, L., others, 2006. Conducting a critical interpretive synthesis of the literature on access to healthcare by vulnerable groups. BMC Medical Research Methodology 6, 35.

Durand, V.M., 2014. Autism spectrum disorder: a clinical guide for general practitioners, First Edition. ed. American Psychological Association, Washington, DC.

Edmonds, G., Beardon, L., 2008. Asperger syndrome and employment: Adults speak out about Asperger syndrome., Adults speak out about Asperger syndrome series. Jessica Kingsley Publishers, London, England.

Griffith, G.M., Totsika, V., Nash, S., Hastings, R.P., 2012. “I just don”t fit anywhere’: support experiences and future support needs of individuals with Asperger syndrome in middle adulthood. Autism: The International Journal of Research & Practice 16, 532–546.

Grzywacza, Dooley, 2003. Good Jobs To Bad Jobs. Social Science & Medicine 56, 1749–1760.

Hurlbutt, K., Chalmers, L., 2004. Employment and adults with Asperger syndrome. Focus on autism and other developmental disabilities 19, 215–222.

Knapp, M., Romeo, R., Beecham, J., 2009. Economic cost of autism in the UK. Autism 13, 317–336. doi:10.1177/1362361309104246

Lorenz, T., Heinitz, K., 2014. Aspergers – Different, Not Less: Occupational Strengths and Job Interests of Individuals with Asperger’s Syndrome. PLoS ONE 9, e100358. doi:10.1371/journal.pone.0100358

Mawhood, L., Howlin, P., 1999. The outcome of a supported employment scheme for high-functioning adults with autism or Asperger syndrome. Autism 3, 229–254.

Mays, N., Pope, C., Popay, J., 2005. Systematically reviewing qualitative and quantitative evidence to inform management and policy-making in the health field. Journal of health services research & policy 10, 6–20.

Metcalfe, C., Davey Smith, G., Sterne, J.A.., Heslop, P., Macleod, J., Hart, C., 2003. Frequent job change and associated health. Social Science & Medicine 56, 1–15. doi:10.1016/S0277-9536(02)00005-9

Molloy, H., Vasil, L., 2002. The Social Construction of Asperger Syndrome: The pathologising of difference? Disability & Society 17, 659–669. doi:10.1080/0968759022000010434

Muller, E., Schuler, A., Yates, G.B., 2008. Social challenges and supports from the perspective of individuals with Asperger syndrome and other autism spectrum disabilities. Autism 12, 173–190. doi:10.1177/1362361307086664

Nicholas, D.B., Attridge, M., Zwaigenbaum, L., Clarke, M., 2015. Vocational support approaches in autism spectrum disorder: A synthesis review of the literature. Autism: The International Journal of Research & Practice 19, 235–245.

Rosqvist, H.B., Keisu, B.-I., 2012. Adaptation or recognition of the autistic subject? Reimagining autistic work life: Deconstructing the notion of “real jobs” in the Swedish autistic self-advocacy movement. Journal of Vocational Rehabilitation 37, 203–212.

Shakespeare, T., 2014. Disability rights and wrongs revisited, Second edition. ed. Routledge, London ; New York.

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Stoddart, K.P., 2012. Asperger syndrome in adulthood: a comprehensive guide for clinicians, 1st ed. ed. W.W. Norton & Co, New York.

Swain, J., French, S., 2000. Towards an Affirmation Model of Disability. Disability & Society 15, 569–582. doi:10.1080/09687590050058189

Swain, J., French, S., Barnes, C., Thomas, C. (Eds.), 2014. Disabling barriers – enabling environments, Third edition. ed. SAGE, Los Angeles.

Thomas, C., 1999. Female forms: experiencing and understanding disability, Disability, human rights, and society. Open University Press, Buckingham ; Philadelphia, Pa.

Van den Ven, L., 2005. It Takes Two To Tango: The Integration Of People With Disabilities Into Society. Disability & Society 11, 91–105.

Van der Noordt, M., IJzelenberg, H., Droomers, M., Proper, K.I., 2014. Health effects of employment: a systematic review of prospective studies. Occupational and Environmental Medicine 71, 730–736. doi:10.1136/oemed-2013-101891

Vernon, A., 1999. The Dialectics of Multiple Identities and the Disabled People’s Movement. Disability & Society 14, 385–398. doi:10.1080/09687599926217

Virtanen, P., 2014. The health effects of employment. Occupational and Environmental Medicine 71, 665–666. doi:10.1136/oemed-2014-102143

Wanberg, C.R., 2012. The Individual Experience of Unemployment. Annual Review of Psychology 63, 369–396. doi:10.1146/annurev-psych-120710-100500

Watson, N., Roulstone, A., Thomas, C. (Eds.), 2012. Routledge handbook of disability studies. Routledge, New York.

Westbrook, J., 2012. Effectiveness of adult employment assistance services for persons with autism spectrum disorders. The Campbell Collaboration.

Wheeler, M., 2011. Syndrome or difference: a critical review of medical conceptualisations of Asperger’s syndrome. Disability & Society 26, 839–851. doi:10.1080/09687599.2011.618739

Wing, L., 1981. Language, social, and cognitive impairments in autism and severe mental retardation. Journal of Autism and Developmental Disorders 11, 31–44. doi:10.1007/BF01531339

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Young, L.L., 2012. Validating difference and counting the cost of exclusion in the lives of people who identify as on the autistic spectrum. Disability & Society 27, 291–294.