Why We Need a Shift in the Social and Medical Model of Our Approach to Autism
DOI:
https://doi.org/10.58445/rars.1221Keywords:
Autism, Double empathy problem, Social model of disability, DSM-V, Applied behavioral analysis, Neurodiversity, Medical Model, Social ModelAbstract
Autism is a neurotype experienced by over 75 million people worldwide. The DSM-5 describes autism as a developmental disorder with social communication deficits and a tendency to participate in ritualistic behaviors. In 2013, autism was renamed to autism spectrum disorder due to the heterogeneity in causes and outward behaviors of autistic individuals. The only empirical treatment for autism at the moment is the controversial applied behavioral analysis (ABA). In society, autism is often misunderstood and mischaracterized by stereotypes. These misunderstandings can lead to individuals on the spectrum feeling excluded from common activities or at a lack of general opportunities, causing feelings of rejection and loneliness. Additionally, current diagnostic materials and information sources on the topic are using harmful language to describe the traits of autistic individuals, thus further contributing to mental health issues like anxiety and depression. ABA has been criticized as trying to make autistic people more neurotypical, as opposed to accepting them for who they are and asking them for input into their treatment. Although it is important that autistic people self-advocate for their needs, paradigm shifts such as the double empathy problem and the social model of disability could change the way that treating and understanding autistic people is approached, and perhaps remove the underlying concept of normal altogether.
References
Al-Dewik, Nader, et al. “Risk Factors Diagnosis Prognosis and Treatment of Autism.” Frontiers in Bioscience, vol. 25, no. 9, Frontiers in Bioscience, Jan. 2020, pp. 1682–717, https://doi.org/10.2741/4873. Accessed 25 May 2024.
American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 5th ed., American Psychiatric Publishing, 2013.
“Applied Behavior Analysis (ABA).” Autism Speaks, 2024, www.autismspeaks.org/applied-behavior-analysis#:~:text=ABA%20therapy%20programs%20can%20help,Decrease%20problem%20behaviors. Accessed 25 May 2024.
Arky, Beth. “Why Many Autistic Girls Are Overlooked - Child Mind Institute.” Child Mind Institute, 30 Oct. 2023, childmind.org/article/autistic-girls-overlooked-undiagnosed-autism/. Accessed 25 May 2024.
“Autism in Girls and Women.” Autism Speaks, 2024, www.autismspeaks.org/autism-girls-and-women. Accessed 25 May 2024.
Barbera, Mary. Turn Autism Around. Podcast, 241, 15 Aug. 2023.
Belcher, Hannah. “Autistic People and Masking.” Autism.org.uk, 7 July 2024, www.autism.org.uk/advice-and-guidance/professional-practice/autistic-masking. Accessed 25 May 2024.
“Benefits of Occupational Therapy for Autism.” Wooster Community Hospital, 4 Mar. 2022, www.woosterhospital.org/benefits-of-occupational-therapy-for-autism/#:~:text=Occupational%20therapy%20can%20be%20very,their%20peers%20through%20better%20interactions. Accessed 25 May 2024.
Bennett, Amanda. “Autism’s Clinical Companions: Frequent Comorbidities with ASD | Children’s Hospital of Philadelphia.” Chop.edu, 14 June 2017, www.chop.edu/news/autism-s-clinical-companions-frequent-comorbidities-asd. Accessed 25 May 2024.
Bernier, Raphael, et al. What Science Tells Us about Autism Spectrum Disorder : Making the Right Choices for Your Child. The Guilford Press, 2020.
BeyondAutism. “Autism and Mental Health - BeyondAutism.” BeyondAutism, 5 Jan. 2024, www.beyondautism.org.uk/about-autism/understanding-autism/mental-health/#:~:text=70%E2%80%9380%25%20of%20children%20and,health%20problems%20in%20their%20lifetime%C2%B9. Accessed 25 May 2024.
Bohnsack, Chris. “First Tool to Diagnose Autism in Children as Young as 16 Months Receives FDA Clearance - Southwest Autism Research & Resource Center (SARRC).” Southwest Autism Research & Resource Center (SARRC), 23 June 2022, autismcenter.org/first-tool-diagnose-autism-children-young-16-months-receives-fda-clearance/. Accessed 25 May 2024.
Buder, Sarah, and Rose Perry. “Social Creatures.” Social Creatures , 12 Apr. 2021, www.thesocialcreatures.org/thecreaturetimes/the-social-model-of-disability. Accessed 25 May 2024.
Cassidy, Sarah. “Suicide - Autism Research | Autistica | Autistica.” Autistica, 23 Aug. 2017, www.autistica.org.uk/our-research/research-projects/understanding-suicide-in-autism#:~:text=Autistic%20people%20are%20much%20more,alarming%2035%25%20have%20attempted%20suicide. Accessed 25 May 2024.
CDC. “Clinical Testing and Diagnosis for Autism Spectrum Disorder.” Autism Spectrum Disorder (ASD), 2024, www.cdc.gov/autism/hcp/diagnosis/index.html. Accessed 25 May 2024.
CDC. “Screening for Autism Spectrum Disorder.” Autism Spectrum Disorder (ASD), 16 May 2024, www.cdc.gov/autism/diagnosis/?CDC_AAref_Val=www.cdc.gov/ncbddd/autism/screening.html. Accessed 25 May 2024.
CDC. “Treatment and Intervention for Autism Spectrum Disorder.” Autism Spectrum Disorder (ASD), 2024, www.cdc.gov/autism/treatment/index.html. Accessed 25 May 2024.
Cohen, Geoffrey L. “How the Need to Belong Drives Human Behavior, with Geoffrey L. Cohen, PhD.” Https://Www.apa.org, 2022, www.apa.org/news/podcasts/speaking-of-psychology/human-behavior#:~:text=really%20belong%20there.-,The%20desire%20to%20belong%20is%20a%20fundamental%20part%20of%20human,can%20have%20far%2Dreaching%20effects. Accessed 25 May 2024.
Cox, Sarah. “Suppressing Stimming for Social Acceptance Has Negative Impact.” Goldsmiths, University of London, 21 Sept. 2021, www.gold.ac.uk/news/stimming-and-social-acceptance/. Accessed 25 May 2024.
Crompton, Catherine J., et al. “Autistic Peer-To-Peer Information Transfer Is Highly Effective - Catherine J Crompton, Danielle Ropar, Claire vm Evans-Williams, Emma G Flynn, Sue Fletcher-Watson, 2020.” Autism, vol. 24, no. 7, 2020, pp. 1704–12, https://doi.org/10.1177/1362361320919286. Accessed 25 May 2024.
Den Houting, Jac. “Why Everything You Know about Autism Is Wrong | Jac Den Houting | TEDxMacquarieUniversity.” Www.ted.com, Sept. 2019, www.ted.com/talks/jac_den_houting_why_everything_you_know_about_autism_is_wrong?language=en.
Dinishak, Janette. “The Deficit View and Its Critics | Disability Studies Quarterly.” Dsq-Sds.org, vol. 36, no. 4, 2016, pp. 1041–5718, dsq-sds.org/index.php/dsq/article/view/5236/4475. Accessed 25 May 2024.
“Early Intervention for Autism.” Https://Www.nichd.nih.gov/, 19 Apr. 2021, www.nichd.nih.gov/health/topics/autism/conditioninfo/treatments/early-intervention#:~:text=Early%20interventions%20occur%20at%20or,effective%20in%20the%20longer%20term. Accessed 25 May 2024.
“Early Intervention for Autism.” Https://Www.nichd.nih.gov/, 19 Apr. 2021, www.nichd.nih.gov/health/topics/autism/conditioninfo/treatments/early-intervention#:~:text=Research%20shows%20that%20early%20diagnosis,on%20symptoms%20and%20later%20skills.&text=Autism%20spectrum%20disorder%20(ASD)%20can,are%202%20years%20of%20age. Accessed 1 June 2024.
Elias, Mark. “51 Autism Statistics: How Many People Have Autism?” Discoveryaba.com, Discovery ABA, 31 Oct. 2023, www.discoveryaba.com/statistics/how-many-people-have-autism. Accessed 25 May 2024.
Grossman, Ruth B. “Perceptions of Self and Other: Social Judgments and Gaze Patterns to Videos of Adolescents with and without Autism Spectrum Disorder - Ruth B Grossman, Julia Mertens, Emily Zane, 2019.” Autism, vol. 23, no. 4, 2019, pp. 846–57, https://doi.org/10.1177/1362361318788071. Accessed 25 May 2024.
Hendricks, Dawn, et al. “Autism Q & A: What Is Applied Behavior Analysis?” Virginia Commonwealth University, interview by Virginia Commonwealth University, Jan. 2015.
“How Long Does ABA Therapy Last? .” Surpass Behavioral Health, 2024, surpassbehavioralhealth.com/aba-therapy/how-long-does-aba-therapy-last/#:~:text=The%20duration%20of%20ABA%20therapy%20varies%20for%20each%20child%2C%20as,into%20a%20part%2Dtime%20program. Accessed 25 May 2024.
Kotowicz, Annie. What I Mean When I Say I’m Autistic. Neurobeautiful, 2022.
Laurie, Corinna. “Autistic Children and Motor Skills.” Autism.org.uk, 4 Nov. 2024, www.autism.org.uk/advice-and-guidance/professional-practice/motor-skills-1#:~:text=autistic%20children%20often%20have%20difficulties,2002. Accessed 25 May 2024.
Milton, Damian. “On the Ontological Status of Autism: The ‘Double Empathy Problem.’” Disability & Society, vol. 27, no. 6, Oct. 2012, pp. 883–87, https://doi.org/10.1080/09687599.2012.710008. Accessed 9 June 2024.
Milton, Damian. “The Double Empathy Problem.” Autism.org.uk, 2 Mar. 2024, www.autism.org.uk/advice-and-guidance/professional-practice/double-empathy. Accessed 25 May 2024.
Mitchell, Peter, et al. “Autism and the Double Empathy Problem: Implications for Development and Mental Health.” British Journal of Developmental Psychology, vol. 39, no. 1, Wiley-Blackwell, Jan. 2021, pp. 1–18, https://doi.org/10.1111/bjdp.12350. Accessed 25 May 2024.
Morin, Amanda. “The Difference between Interventions and Accommodations.” Understood, 16 Oct. 2019, www.understood.org/en/articles/the-difference-between-interventions-and-accommodations. Accessed 25 May 2024.
Morrow, Barry, and Ronald Bass. “Rain Man.” IMDb, 16 Dec. 1988, www.imdb.com/title/tt0095953/.
National Autistic Society. “Masking.” Autism.org.uk, 2024, www.autism.org.uk/advice-and-guidance/topics/behaviour/masking#:~:text=Autistic%20people%20mask%20for%20a,pass%27%20in%20a%20neurotypical%20world. Accessed 25 May 2024.
Neff, Megan. “Insights of a Neurodivergent Clinician.” Insights of a Neurodivergent Clinician , 5 June 2023, neurodivergentinsights.com/blog/what-is-masking-in-autism#:~:text=For%20example%2C%20when%20a%20child,please%20others%20and%20evading%20punishment. Accessed 25 May 2024.
NIH. “Autism.” National Institutes of Health (NIH), 17 Jan. 2024, www.nih.gov/nih-style-guide/autism#:~:text=Autism%20spectrum%20disorder%20(ASD)%20is,mental%20illness%20or%20a%20disease.%E2%80%8C. Accessed 25 May 2024.
NIH. “Biomarkers.” National Institute of Environmental Health Sciences, 2018, www.niehs.nih.gov/health/topics/science/biomarkers. Accessed 25 May 2024.
Rudy, Lisa Jo. “How Lack of Social Motivation Impacts Autistic People.” Verywell Health, 2018, www.verywellhealth.com/social-motivation-and-autism-4176314#:~:text=Autistic%20people%20often%20think%20differently,or%20wear%20in%20particular%20settings. Accessed 25 May 2024.
Rudy, Lisa Jo. “Making Sense of the Three Levels of Autism.” Verywell Health, 9 Jan. 2024, www.verywellhealth.com/what-are-the-three-levels-of-autism-260233. Accessed 1 June 2024.
Sasson, Noah J., et al. “Neurotypical Peers Are Less Willing to Interact with Those with Autism Based on Thin Slice Judgments.” Scientific Reports, vol. 7, no. 1, Nature Portfolio, Feb. 2017, pp. 1–10, https://doi.org/10.1038/srep40700. Accessed 25 May 2024.
Seidman, Gwendolyn. “Why Do We like People Who Are Similar to Us?” Psychology Today, 18 Dec. 2018, www.psychologytoday.com/us/blog/close-encounters/201812/why-do-we-people-who-are-similar-us. Accessed 25 May 2024.
“Speech and Language Developmental Milestones.” NIDCD, 13 Oct. 2022, www.nidcd.nih.gov/health/speech-and-language#:~:text=The%20first%203%20years%20of,speech%20and%20language%20of%20others. Accessed 25 May 2024.
Tacia, Melissa. Oh, That’s Just My Autism. Podcast, 112, 28 June 2023.
“The Controversy around ABA - Child Mind Institute.” Child Mind Institute, 6 Nov. 2023, childmind.org/article/controversy-around-applied-behavior-analysis/. Accessed 25 May 2024.
“The ‘Extreme Male Brain’: An Explanation for Autism?” Kennedykrieger.org, Kennedy Krieger Institute, 23 Feb. 2010, www.kennedykrieger.org/stories/interactive-autism-network-ian/extreme_male_brain#:~:text=Similarly%2C%20in%201944%2C%20when%20Hans,found%20it%20only%20in%20boys.&text=The%20impression%20that%20there%20are,much%20in%20the%20years%20since. Accessed 25 May 2024.
Yu, Qian, et al. “Efficacy of Interventions Based on Applied Behavior Analysis for Autism Spectrum Disorder: A Meta-Analysis.” Psychiatry Investigation, vol. 17, no. 5, Korean Neuropsychiatric Association, May 2020, pp. 432–43, https://doi.org/10.30773/pi.2019.0229. Accessed 25 May 2024.
Zauderer, Steven. “ABA Therapy Insurance Coverage for Autism (by State).” Crossrivertherapy.com, 11 Jan. 2023, www.crossrivertherapy.com/insurance#:~:text=Most%20insurance%20companies%20only%20cover,ABA%20therapy%20is%20medically%20necessary. Accessed 25 May 2024.
Downloads
Posted
Categories
License
Copyright (c) 2024 Mackenzie Jerrold
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.