Thesis

Interrogating Normal: Autism Social Skills Training at the Margins of a Social Fiction

Social skills training programs for autistic youths and adults exist in nearly every school district and community; these programs focus on bringing autistic people into synchronization with developmental, linguistic, and social norms. However, these norms have not been critically evaluated, and autistic people themselves have not been surveyed about their experiences of, responses to, or opinions about these programs. This study sought direct input from autistic people about these programs.
 Nothing About Us Without Us (NAUWU), an anonymous cross-sectional survey study, was posted online from 18 February, 2014 to 4 April, 2014, and was open to adults (18 years or older) who were formally diagnosed or self-diagnosed on the Autism Spectrum.
 Major findings from the NAUWU study are that most of the 91 autism-specific social skills programs studied are not focused on individuals or their unique sensory and communicative needs, do not recognize participants’ existing social abilities and accomplishments, do not provide age-appropriate or gender-inclusive instruction, and do not consider or support autistic ways of learning and being social.
 In response to these reported shortcomings, NAUWU participants shared what they would have included, changed, or kept in the social skills training programs they attended, and what sorts of programs they would create now, looking back. These suggestions and ideas are presented in eight categories in order of prevalence and stated importance, and curriculum design suggestions are included.

Social skills training programs for autistic youths and adults exist in nearly every school district and community; these programs focus on bringing autistic people into synchronization with developmental, linguistic, and social norms. However, these norms have not been critically evaluated, and autistic people themselves have not been surveyed about their experiences of, responses to, or opinions about these programs. This study sought direct input from autistic people about these programs. Nothing About Us Without Us (NAUWU), an anonymous cross-sectional survey study, was posted online from 18 February, 2014 to 4 April, 2014, and was open to adults (18 years or older) who were formally diagnosed or self-diagnosed on the Autism Spectrum. Major findings from the NAUWU study are that most of the 91 autism-specific social skills programs studied are not focused on individuals or their unique sensory and communicative needs, do not recognize participants’ existing social abilities and accomplishments, do not provide age-appropriate or gender-inclusive instruction, and do not consider or support autistic ways of learning and being social. In response to these reported shortcomings, NAUWU participants shared what they would have included, changed, or kept in the social skills training programs they attended, and what sorts of programs they would create now, looking back. These suggestions and ideas are presented in eight categories in order of prevalence and stated importance, and curriculum design suggestions are included.

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