References
Baker, D. L. (2006). Neurodiversity, neurological disability and the public sector: notes on the autism spectrum. Disability & Society, 21(1), 15-29.
The administrative implications of neurodiversity and neurological disability influence parent exposure to autism resources. Baker (2006) specifically applies socio-environmental frameworks to discuss key autism stakeholders (autistic advocates, parents, health care providers, educators) and their impact on resource access. The article discusses autism history, neurological disability and diversity, and diagnosis administration. Data for this study are from a survey of parents or caregivers of children with autism (n = 423). The research findings illustrate the widespread use of ABA across income levels and community types. Parents of autistic children tend to expect their child to have development differences by kindergarten and receive a diagnosis approximately three years later. The article stresses the importance of programs designed to deliver “deliberate, individualized and flexible case management” (p 21) as early intervention strategies following diagnosis. Furthermore, the article highlights specific information sources by which parents access information related to ABA. The research outcomes additionally indicate high use of information from the government, private organizations, and schools.
Baker, J. P., & Lang, B. (2017). Eugenics and the origins of autism. Pediatrics, 140(2).
Modern genetic and neurobiological autism research possesses historical connections to the eugenics movement. Baker and Lange (2017) connect the current conflict between family advocacy organizations and autistic adults to a historic debate between competing neurotypical and neurodiverse frameworks. The article provides a historical analysis of the development of the description of autism during the 1940s. The narrative highlights Dr. Leo Kanner and Dr. Hans Asperger’s focus on distinguishing autistics from the “unfit” in order to distance their autistic patients from children with ‘severe mental retardation’ (p 2). Despite suggestions that Asberger recognized autism as a spectrum, his early definitions focused on patients with increased intelligence and social deficits. Illustrated in this historical analysis of autism diagnoses, eugenists during World War II medicalized neurodiversity affiliated with behavioral deviancy. The authors acknowledge Asperger’s referral of disabled patients to hospitals practicing euthanasia. The connection between medical research and government-sponsored elimination illustrates the nature of current debates regarding neuroscientific research on disability. The authors argue any current research examining the genetic basis of autism must acknowledge autism’s historical ties to the eugenics movement.
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.
Current controversies surrounding autism shape policy outcomes and represent a key component of the autism stakeholder experience. Feinberg and Vacca (2000) outline how the Individuals with Disabilities Education Act (IDEA) functions as an autism education policy within the context of conflicting provider and parent views. The article discusses the necessity for family involvement in service decision-making. The authors’ analysis focuses on the importance of engagement between parents and teachers in school settings. Additionally, this research explores potential gaps in school-provided services. The authors provide a detailed analysis of IDEA’s impact on families and highlight how the age of autism diagnosis coincides with the upper limit of Part C. Findings identify the transition from clinician care from birth-to-3 to special education during ages 3-to-5 as a prominent source of confusion for families. Furthermore, the article discusses ongoing litigation involved in defining appropriate components of the Individualized Education Program (IEP). Analysis of its structure and influence sheds light on the current experience of autism stakeholders and how policy dictates the distribution of autism resources such as ABA.
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.
Levy et al. (2011) outline current findings of possible genetic mechanisms associated with autism spectrum disorders (ASD). This research explores specific de novo events in which deletion or duplication contribute to a genetic mutation associated with autism. Conducting phenotypic analysis of DNA samples from families with an autistic child (n = 887), the findings illustrate specific genetic patterns within target gene loci represent autism’s basis in de novo deletions, duplications, and “ultra-rare” duplications. This research observed 75 de novo events in 68 probands and 19 events in 17 sibs. Overall the authors found a higher number of mutations in probands compared to sibs. The gender-based prevalence of protective factors against mutation revealed females expressed higher resistance to autism from genetic causes. The authors discuss location-specific mutations and their association with mental retardation, ASD, mental epilepsy, and schizophrenia. The article additionally discusses the genetic transmission of autism within a family. Published in a leading neuroscience journal, this piece embodies the medicalization of neurodiversity on a genetic and biological language.
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/
In her article published in NeuroClastic, autistic author C.L. Lynch (2021) provides a critical analysis of ABA protocol and describes its potential to abuse autistic children. Drawing from her own experiences as an autistic female coping with anxiety through stimming, Lynch describes how she engages with the world as an autistic individual. By critiquing linked ABA training videos, Lynch portrays specific instances in which ABA protocol might abuse autistic children and erase their needs. Specifically discussing stimming, tantrum behavior, overstimulation, and exhaustion Lynch argue neurotypical frameworks emphasize the child’s behaviors as opposed to their human needs. Lynch claims ABA often benefits non-autistic parents who may not understand ABA’s influence on their children. This rhetoric exposes the tensions between non-autistic parent advocates and autistic self-advocates. Her critical analysis of ABA’s enforcement of compliance highlights a widespread critique of ABA from autistic self-advocate groups. Thus, Lynch represents a key autism stakeholder as an autistic self-advocate and scholar. Work written by autistic self-advocates represents a key component of autistic activism important in the future of policymaking and treatment strategies.
Markram, K., & Markram, H. (2010). The intense world theory–a unifying theory of the neurobiology of autism. Frontiers in human neuroscience, 224.
Markram and Markram (2010) present the Intense World Theory as a potentially unifying framework for the biological mechanism of autism. The authors offer hyper-functioning local neural microcircuits as a potential biological mechanism of autism. Through this model, hyper-perception, hyper-attention, hyper-memory, and hyper-emotionality connect to memory and emotional states. Specific molecular cascades contribute to hyper-reactive, hyper-plastic, and hyper-functional microcircuits in autistic brains. Biological differences in protein function and cell regulation influence neocortical columns involved in higher brain functions and complex behavior. The authors discuss their findings in the context of current research predicting the underdevelopment of long-range neural connections and the overdevelopment of short-term connections. The article recognizes the amygdala’s key role in emotional regulation and reviews autism research in human amygdala lesion case studies, VPA-treatment research, and fMRI amygdala activation studies. Autistic individuals may resort to hyper-preference, internal coping states in reaction to overwhelming sensory experiences. Such research represents stimming as a potential sensory processing mechanism specifically related to hyper-preference of behavioral patterns.
Nolan, J., & McBride, M. (2015). Embodied semiosis: Autistic ‘stimming’ as sensory praxis. In International handbook of semiotics (pp. 1069-1078). Springer, Dordrecht.
In Chapter 48 of the International Handbook of Semiotics, authors Nolan and McBride (2015) discuss how stimming behavior embodies language in autistic individuals. Highlighting key autism scholarship, the authors discuss how associating specific behavioral symptoms with autism as deviant enables the medicalization of neurodiversity. Conceptualizing autism as a disease produces normative sensory frameworks which operate within social institutions. Using Marx and Foucault’s theory on normative constructs within society, Nolan and McBride (2015) describe the social conflict embedded between deficit-driven conceptions of autism and neurodiverse rhetoric. The authors contextualize autistic sensory experience within the importance of sensory periodization in early childhood. Highlighting work by autistic scholars, the authors frame stimming as an autistic sensory-based language system. The authors analyze Melanie Yergeau’s (2012) video ‘I Stim, Therefore I am’ as a powerful, artistic depiction of the experience of stimming. This research highlights an important theoretical analysis of autism, especially relating to sensory frameworks in the context of stimming.
Rottier, H., & Gernsbacher, M. A. (2020). Autistic adult and non-autistic parent advocates: Bridging the divide. In Disability alliances and allies. Emerald Publishing Limited.
This historical analysis of autism advocacy over time highlights the development of medicalized and neurodiverse frameworks within autistic adult and non-autistic parent advocate movements. Rottier and Gernschacher (2020) illustrate the conflict between both movements and describe the reconceptualization of autism over time by autistic self-advocates. The authors suggest a mutually rewarding alliance to bridge the past and current divide between autistic adults and non-autistic parents to create policy reform. Drawing from Tom Shakespear’s (2014) self-advocacy scholarship, the authors emphasize the importance of resources, recognition, and autonomy within the proposed partnership. The authors recognize activism as a key resource and offer website resources co-led by autistic adults and non-autistic parents as an example of an effective partnership. Their argument also emphasized the recognition of autistic adults’ existence, validity, and value as an important part of a partnership. In this way, the author highlights the necessity to encourage autistic adults’ autonomy in the form of rhetoric, labeling, and respect for autistic spaces.
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.
Sandovol-Norton and Sheksy (2019) discuss the application of ABA theory to “lower function” and nonverbal individuals in the context of stimming, operant conditioning, and behaviorist principles. Reviewing current clinical and autistic advocacy scholarship, this literature review highlights widespread criticism of Applied Behavioral Analysis (ABA) therapy and questions its efficacy as a legitimate resource for autistic individuals. The article summarizes the history of ABA, presents the therapy’s lack of scientific evidence, illustrates the psychological harm of ABA on autistic individuals, and draws a comparison between ABA and abuse. The presented research and rhetoric by anti-ABA advocates specifically emphasize the psychological harm this therapy enacts on autistic children. Focusing on operant conditioning and compliance enforcement, the authors outline current concerns and present an argument for autism stakeholders to reconsider ABA as the “gold standard for autism”. This research represents an important, critical analysis of ABA and furthers the case for alternative autism resources.
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.
Parents represent key autism stakeholders who highly influence the resources autistic individuals access and experience. Using interviews of non-autistic parents of autistic children (n = 4), this cross-sectional study explores the behavioral response of parents after their child received an autism diagnosis. Specifically, the article highlights parents’ engagement in intense information gathering followed by persistent, external problem-focused behavior. The authors coded engagement with early intervention program participation and online research as parent coping mechanisms. Although the authors highlight the information gathering period as important, they fail to discuss the type of resources parents accessed. The article additionally describes the experience of transitioning from an Individualized Family Services Plan (IFSP) to an Individualized Education Plan (IEP). The study’s interviews revealed parents emphasized their appreciation for accessible, supportive administrators. Analysis of parent behavior and policy impact highlights how stakeholder identity and resource access nuance autistic experience.