This week I focused on developing the artistic component of my project. I struggled with what information to showcase in the second piece. I want this piece to emphasize the different frameworks of autistic advocacy, more specifically medical advocacy, autistic self-advocacy, and parent advocacy. Exploring these stakeholders and their positionality represents a key component of understanding how autistic individuals are exposed to different resources. I use resources as a neutral term to describe any type of asset, care strategy, or community group used by a stakeholder affected by autism. Examples of resources include ABA therapy, medical research, community support groups, and clinical care. Agreement on resource impact, especially in the case of ABA, can vary among stakeholder groups. Last week, I specifically focused on examining the differences between autistic self-advocates and non-autistic parents. Often, neurotypical and neurodiverse frameworks dictate how such stakeholders judge resource impact (Rotter and Gernsbacher, 2020). Parents socialized into neurotypical concepts of behavior may be more likely to utilize ABA as a resource for their autistic child (Stoner and Thompson, 2005). The strength of the socially embedded stigma surrounding disability reinforces the prevalence of resources focused on promoting neurotypicality. ABA is the most popular resource parents report using across all income levels and community types (Baker, 2006). Despite its widespread use, many autistic advocates believe its enforcement of neurotypical behavior erases the needs of those who function through neurodiverse mechanisms (Lynch, 2021). Research questioning ABA’s efficacy highlights its lack of scientific credibility, negative psychological impacts on autistics, unrealistic demands for autistic children, and high financial cost for families (Sandoval-Norton and Shkedy, 2019). By enforcing compliance with neurotypicality instead of acceptance of neurodiversity, ABA illustrates how society defines autism as deviant. Examining neurotypical ideas of autism exposes the ways in which society searches for genetic explanations for deviant behavior. I specifically want to describe how the history of eugenics connects to the ongoing biological research on autism (Baker and Lang, 2017). This history nuances ABA practices which focus on eradicating deviant behavior associated with autism such as stimming (Nolan and McBride, 2015). At the same time, genetic research might provide valuable symptom explanations which can shape resources. For example, the Intense World Theory provides a potentially unifying framework for the biological mechanism of autism and an explanation of stimming (Markram and Markram, 2010). Such research illustrates the importance of stimming as a coping mechanism for hyper-connectivity and could be used to form autism policy moving forward (Nolan and McBride, 2015).
References
Baker, D. L. (2006). Neurodiversity, neurological disability and the public sector: notes on the autism spectrum. Disability & Society, 21(1), 15-29.
Baker, J. P., & Lang, B. (2017). Eugenics and the origins of autism. Pediatrics, 140(2).
Feinberg, E., & Vacca, J. (2000). The drama and trauma of creating policies on autism: Critical issues to consider in the new millennium. Focus on Autism and Other Developmental Disabilities, 15(3), 130-137.
Levy D, Ronemus M, Yamrom B, Lee YH, Leotta A, Kendall J, Marks S, Lakshmi B, Pai D, Ye K, Buja A, Krieger A, Yoon S, Troge J, Rodgers L, Iossifov I, Wigler M. Rare de novo and transmitted copy-number variation in autistic spectrum disorders. Neuron. 2011 Jun 9;70(5):886-97. PubMed PMID: 21658582.
Lynch, C. L. (2021, August 13). Invisible abuse: Aba and the things only autistic people can see. The Autism Spectrum According to Autistic People. Retrieved May 8, 2022, from https://neuroclastic.com/invisible-abuse-aba-and-the-things-only-autistic-people-can-see/
Markram, K., & Markram, H. (2010). The intense world theory–a unifying theory of the neurobiology of autism. Frontiers in human neuroscience, 224.
Nolan, J., & McBride, M. (2015). Embodied semiosis: Autistic ‘stimming’ as sensory praxis. In International handbook of semiotics (pp. 1069-1078). Springer, Dordrecht.
Rottier, H., & Gernsbacher, M. A. (2020). Autistic adult and non-autistic parent advocates: Bridging the divide. In Disability alliances and allies. Emerald Publishing Limited.
Sandoval-Norton, A. H., & Shkedy, G. (2019). How much compliance is too much compliance: Is long-term ABA therapy abuse?. Cogent Psychology, 6(1), 1641258.
Stoner, J. B., Bock, S. J., Thompson, J. R., Angell, M. E., Heyl, B. S., & Crowley, E. P. (2005). Welcome to our world: Parent perceptions of interactions between parents of young children with ASD and education professionals. Focus on Autism and Other Developmental Disabilities, 20(1), 39-51.