Part Two of the Research Project: The Narrative Shift of Autism-based Policies

The National Institute of Mental Health defines autism spectrum disorder as “a
neurological and developmental disorder that affects how people interact with others,
communicate, learn and behave” (National Institute of Mental Health). Individuals diagnosed with autism often find themselves at odds with our fast-paced, cutthroat society that frequently overlooks minority communities especially reflected in our initial legislation. Autism was initially not taken into account in law proceedings and acts like institutionalization and mercy killing were seen as the best solutions. There was minimal assistance to individuals with autism or their families and posed a financial barrier when it came to medical costs. Slowly over time,
impactful court cases and representation in the media changed the landscape of autism rights, providing more services and financial assistance to those who are part of the autism spectrum disorder (ASD). However, more still needs to be done regarding government policies and assistance to ensure better outcomes for those diagnosed with autism. It becomes increasingly important to introduce equitable government assistance and policies to aid those with autism, especially with the rise in autism diagnoses.

To examine how laws and policies evolved to reflect the growing changes in the
perception of autism, I decided to use Ian Hacking’s Kinds of People: Moving Targets as a lens to note how the classification of autism was established and how it developed. In particular, Hacking illustrates the concepts of “making up people”, forming new classifications, and the “looping effect” which exhibits how classifications interact with our environment. In his work, Hacking uses autism as a specific example to analyze its origin, basis, and criteria for diagnosis
(Hacking, pp. 285–318).

In the novella Of Mice and Men by John Steinbeck, we are introduced to a character
named Lennie who is described as having an intellectual disability. Many of his actions are without malicious intent but have harmful consequences. At the climax of the novel, Lennie accidentally kills a woman when trying to pet her soft hair. Although he just meant to touch something soft, his lack of motor control stemming from his intellectual disability ultimately leads to the woman’s demise. Due to the lack of understanding of his condition, the town wanted revenge for the murder, thus making mercy killing the best option for Lennie (Steinbeck). The lack of outrightly saying a specific intellectual disability, like autism, Hacking’s concepts of “making up people” and forming new classifications are not present. Thus there is no looping
effect where intellectual disability is considered in light of the judicial system so Lennie is not judged fairly. In a narrative analysis of autism social care, ASD was thought to be a rare condition linked to schizophrenia. Institutionalization was considered the best solution and there was a dearth of information available to families. Autism was thought to be caused by poor parent-child relationships particularly blaming the mother. Due to this line of thinking, ASD was rarely discussed within society and individuals with autism were isolated from the community (D’Astous, pp. 789–807). Thus Hacking’s concept of “making up people” starts to emerge by noting the symptoms but failing to grasp the correct causes. Hence the “looping effect” is minimal and mainly negative as it leads to social ostracization and no government assistance. In the court case Board of Education V. Rowley (1982), the extent of “free accessible public education” was debated due to a public school discontinuing sign language translation services for a deaf student, claiming this resource was unnecessary. The student’s parents sued, claiming that discontinuing this service does not allow the student to maximize their potential as the child only understands 60% of what happens in the class. The court ruled that only providing sufficient educational resources is required, not maximizing a student’s potential, thus not providing a sign language translator for the student (Brittanica). Although the student in this court case was deaf, the impact also applies to students with ASD as it is not required for their educational potential to be maximized with substantial resources. Hacking’s “making up people” gradually emerges through the court’s acknowledgment of disabilities that affect education. The “looping effect” created through the case ruling explores the extent of services provided to those with autism,
with only minimal resources necessary to be issued. With the lack of information supplied, fear of social ostracization, minimal requirements being established, and little governmental assistance, ASD becomes a huge financial barrier in terms of medical, therapeutic, and social services. Typical costs of a family with children are tripled with a child with autism and medical expenses are six times greater (Dillenburger, pp. 134–51). It becomes essential that legislation is enacted to alleviate the financial barrier.

After years of advocacy, autism awareness and access to resources began to be
implemented, making progress for individuals with autism and their families. In the case, Endrew F. vs. Douglas County School District (2017), the level of education benefit given to a student with disabilities was questioned and discussed. Endrew, a student with autism was under an individualized education program (IEP) in public school. His parents were unsatisfied with his IEP and transferred him to a private school specializing in autism support. Endrew made substantial progress and his parents sued the public school’s school district, seeking reimbursement for the private school tuition as the public school failed to meet his needs. The Supreme Court ruled in favor of Endrew and his family saying that the IEP should be designed to make meaningful progress, tailored to the student’s unique needs, instead of making a minimal effort. This case led to greater access to support services and educational opportunities for students with autism while increasing school accountability (Heffernan). Ian Hacking’s concept of “making up people” is addressed as autism is defined and addressed. The “looping effect” is also implemented with the inception of substantial personalized educational support systems for students with ASD. In the case, Katie A. v. Bonta (2006), the necessity of community-based
mental health services was questioned specifically with the absence of them being a violation of the American Disabilities Act (ADA) and California’s Medicaid system. Katie who was required to have mental health services due to her condition was not able to obtain these resources. The court ruled that California must expand its mental health support systems, especially for children in the foster care system through supplying home and community-based therapeutic interventions. This case also impacted children with autism, by expanding their services on home and community-based care, reducing reliance on institutionalization (Bazelon Center). “Making up people” is once again addressed by identifying symptoms typically associated with children with autism and the “looping effect” is implemented with the expansion of mental health resources for those who are Medicaid-eligible. In Olmstead v. L.C. (1999), the segregation of individuals with disabilities by unnecessarily institutionalizing them was questioned, particularly if it violated the American Disabilities Act. Two patients were in a psychiatric hospital but when medical professionals decided they were stable and suitable for community living, the state of
Georgia kept them unnecessarily, citing a lack of community housing. The patients sued the state citing the unnecessary institutionalization. The Supreme Court ruled in favor of the patients citing the obligation of the state to provide community-based services including housing and not utilize unnecessary institutionalization. This was a landmark decision for the ASD community as it meant expanding resources including community housing and assistance with daily tasks (Center for Healthcare Strategies). The “looping effect” was utilized here as disabilities such as ASD interacted with societal norms, expectations, and negligence and thus resulted in expanded resources, especially for adults with autism. These cases provided a turning point for ASD rights and resources ensuring a higher quality of life for those with autism. The utilization of media to present autism to a wider audience breaks down many systematic barriers and stereotypes associated with ASD. In the show Arthur, the character George meets with Carl, who has autism. Despite Carl’s differences, they become fast friends and George gains a new perspective on how individuals view our world. Their friendship showed many viewers that those with autism do not
need to be isolated from society and provide an intriguing view of life. The episode’s choice of broadcasting channel, PBS, is especially significant as it is free-to-air and family-friendly ensuring an immense wide audience (Bailey). The last twenty-five years of autism advocacy have proven important in addressing many of the concerns and needs of those with ASD.

After decades of hard work, we can begin to see the achievements of accessible resources for ASD permeate within our society. The increased awareness of autism and its symptoms led to a rework of its diagnosis criteria, leading to an increase in diagnoses. Autism was found to have both environmental and genetic factors therefore shifting the origin away from poor parent-child relationships (D’Astous, pp. 789–807). Considerable research on autism demonstrates that applied behavior analysis (ABA) interventions play a positive role by lessening symptoms of those with ASD, particularly children while also reducing the future financial burden from
medical costs. In addition, continuing education programs that focus on living skills reduce the societal barrier that adults with autism face while encouraging them to participate in ordinary daily activities. The United States Combating Autism Act of 2006 and Autism-Insurance Act of 2008 ensure ABA and therapeutic programs for those with ASD through government funding while also developing a committee for autism research (Dillenburger, pp. 134–51). These policies became a major stepping stone for an increasingly equitable contemporary global society
but much is still left to be done.

Advancements in autism-related assistance and policies stemming from influential court cases and forms of media and literature alleviate many of the concerns families had for their children with autism. The lessening reliance on institutionalization, increased use of effective therapeutic interventions, and 21st-century government policies positively impact the lives of individuals with ASD, by promoting social inclusion and removing community barriers. However, more work still needs to be done to ensure opportunities are available globally.

Works Cited
Bailey, Greg. Arthur: When Carl Met George. 9 Story Entertainment, 2010.
Bazelon Center. “Katie A. V. Bonta | Bazelon Center for Mental Health Law.” Www.bazelon.org, www.bazelon.org/katie-a-v-bonta/.
Britannica, The Editors of Encyclopaedia. “Board of Education of the Hendrick Hudson Central School District v. Rowley”. Encyclopedia Britannica, 22 Jun. 2024,
https://www.britannica.com/topic/Board-of-Education-of-the-Hendrick-Hudson-Central-School-District-v-Rowley. Accessed 1 December 2024.
Center for Healthcare Strategies. “The Olmstead Decision 25 Years Later- CHCS Blog.” Center for Health Care Strategies, 19 June 2024, www.chcs.org/the-olmstead-decision-25-years-later/. Accessed 1 Dec. 2024.
D’Astous, Valerie, et al. “Retracing the Historical Social Care Context of Autism: A Narrative Overview.” British Journal of Social Work, vol. 46, no. 3, Dec. 2014, pp. 789–807, https://doi.org/10.1093/bjsw/bcu131. Accessed 16 Nov. 2024.
Dillenburger, Karola, et al. “Lost in Translation: Public Policies, Evidence-Based Practice, and Autism Spectrum Disorder.” International Journal of Disability, Development and Education, vol. 61, no. 2, Apr. 2014, pp. 134–51, https://doi.org/10.1080/1034912x.2014.905059. Accessed 16 Nov. 2024.
Hacking, Ian. “Kinds of People: Moving Targets.” Proceedings of the British Academy, vol. 151, 2007, pp. 285–318. Accessed 17 Nov. 2024.
Heffernan, Daniel T. S. “Endrew F. V. Douglas County and Its Impact on Special Education Law.” Boston Bar Association, 26 Oct. 2017, bostonbar.org/journal/endrew-f-v-douglas-county-and-its-impact-on-special-education-law/.
National Institute of Mental Health. “Autism Spectrum Disorder.” National Institute of Mental Health, 2024, www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd.
Steinbeck, John. Of Mice and Men. 1937. Penguin Books, 1937.

Part Two of the Research Project: The Narrative Shift of Autism-based Policies
In His Shoes: Understanding Autism in My Family

The National Institute of Mental Health defines autism spectrum disorder as “a neurological and developmental disorder that affects how people interact with others, communicate, learn and behave” (National Institute of Mental Health). Individuals diagnosed with autism often find themselves at odds with our fast-paced, cutthroat society that frequently overlooks minority communities especially reflected in our 20th century legislation. Autism was initially not taken into account in law proceedings and institutionalization was seen as the best solution. There was minimal assistance to individuals with autism or their families, which posed a financial barrier when it came to medical costs. Slowly over time, impactful court cases and representation in the media changed the landscape of autism rights, which caused the government to provide more services and financial assistance to those who are part of the autism spectrum disorder (ASD). However, more still needs to be done regarding government policies and financial assistance to ensure better outcomes for those diagnosed with autism. Due to the rise of autism diagnoses, it becomes increasingly important to introduce equitable government assistance and policies. 

To examine how laws and policies have evolved to reflect the growing changes in the perception of autism, I decided to use Ian Hacking’s Kinds of People: Moving Targets as a lens to note how the classification of autism was established and how it has developed. In particular, Hacking illustrates the concepts of “making up people” by which he means forming new classifications, and the “looping effect” which explains how these classifications interact and change with our environment. In his work, Hacking uses autism as a specific example of how a population is classified, analyzing its origin and criteria for diagnosis. In particular, Hacking addresses his idea of “making up people” by analyzing how the word “autism’ was made and its evolving definition where its meaning constantly changes and new information changes our perception of autism. This resembles the “looping effect” with the changes and new subclassifications that arise when the autism classification interacts with the environment (Hacking, pp. 285–318). 

The lack of policies or assistance that encompass those with autism often led to harmful consequences for those in this minority community. In the novella Of Mice and Men by John Steinbeck, we are introduced to a character named Lennie who is described as having an intellectual disability. Many of his actions are without malicious intent but have harmful consequences. At the climax of the novella, Lennie accidentally kills a woman when trying to pet her soft hair. Although he just meant to touch something soft, his lack of motor control, stemming from his intellectual disability, ultimately leads to the woman’s demise. Due to the lack of understanding of his condition, the town wants revenge for the murder. However, his friend wants to save him from the mob and he does this by shooting Lennie in the back of his head so that he does not see it coming (Steinbeck). Although Hacking’s concepts of “making up people” and forming new classifications are not present in the novella, Lennie’s story is an example of how different people can be classified as dangerous. Thus there is also no looping effect where intellectual disability is considered a mitigating factor in the judicial system, so Lennie is not judged fairly by the townspeople.

 When the idea of autism started to emerge, incorrect ideas were plastered on this condition leading to social isolation and a lack of resources. In a narrative analysis of autism social care, ASD was thought to be a rare condition linked to schizophrenia. In the 20th century, institutionalization was considered the best solution and there was a dearth of information available to families. Autism was thought to be caused by poor parent-child relationships and put particular blame on mothers. Due to this line of thinking, ASD was rarely researched and individuals with autism were isolated from the community (D’Astous, pp. 789–807). Thus Hacking’s concept of “making up people” starts to emerge by noting the symptoms but failing to grasp the correct causes. Hence the “looping effect” is minimal and mainly negative as it leads to social ostracization and no government assistance. 

Children with disabilities were not prioritized with the U.S. school system thus creating an educational disparity which creates a lack of future opportunities to contribute to society. In the court case Board of Education V. Rowley (1982), the extent of “free accessible public education” was debated due to a public school discontinuing sign language translation services for a deaf student, claiming this resource was unnecessary. The student’s parents sued, claiming that discontinuing this service does not allow the student to maximize their potential as the child only understands 60% of what happens in the class. The court ruled that only providing sufficient educational resources is required, not maximizing a student’s potential, thus not providing a sign language translator for the student (Britannica). Although the student in this court case was deaf, the impact also applies to students with ASD as it is not required for their educational potential to be maximized with substantial resources. Hacking’s “making up people” gradually emerges through the court’s acknowledgment of disabilities that affect education. The “looping effect” created through the case ruling explores the extent of services provided to those with autism, with only minimal resources necessary to be issued. With the lack of information supplied, fear of social ostracization, minimal requirements being established, and little governmental assistance, ASD becomes a huge financial barrier in terms of medical, therapeutic, and social services. Typical costs of a family with children are tripled with a child with autism and medical expenses are six times greater (Dillenburger, pp. 134–51). It becomes essential that legislation is enacted to alleviate the financial barrier.

After years of advocacy, autism awareness and access to resources began to be implemented, making progress for individuals with autism and their families. In the case, Endrew F. vs. Douglas County School District (2017), the level of education benefit given to a student with disabilities was questioned and discussed. Endrew, a student with autism was under an individualized education program (IEP) in his public school. His parents were unsatisfied with his IEP and transferred him to a private school specializing in autism support. Endrew made substantial progress and his parents sued the public school’s school district, seeking reimbursement for the private school tuition as the public school failed to meet his needs. The Supreme Court ruled in favor of Endrew and his family saying that the IEP should be designed to make meaningful progress, tailored to the student’s unique needs, instead of making a minimal effort. This case led to greater access to support services and educational opportunities for students with autism while increasing school accountability (Heffernan). Ian Hacking’s concept of “making up people” is addressed as autism is defined and addressed. The “looping effect” is also implemented with the inception of substantial personalized educational support systems for students with ASD. 

In the case, Katie A. v. Bonta (2006), the necessity of community-based mental health services was questioned specifically with the absence of them being a violation of the American Disabilities Act (ADA) and California’s Medicaid system. Katie who was required to have mental health services due to her condition was not able to obtain these resources. The court ruled that California must expand its mental health support systems, especially for children in the foster care system through supplying home and community-based therapeutic interventions. This case also impacted children with autism, by expanding their services on home and community-based care, reducing reliance on institutionalization (Bazelon Center). “Making up people” is once again addressed by identifying symptoms typically associated with children with autism and the “looping effect” is implemented with the expansion of mental health resources for those who are Medicaid-eligible. 

In the Olmstead v. L.C. (1999) court case, the segregation of individuals with disabilities by unnecessarily institutionalizing them was questioned, particularly if it violated the American Disabilities Act. Two patients were in a psychiatric hospital, but when medical professionals decided they were stable and suitable for community living, the state of Georgia kept them unnecessarily, citing a lack of community housing. The patients sued the state citing the unnecessary institutionalization. The Supreme Court ruled in favor of the patients citing the obligation of the state to provide community-based services including housing and not utilize unnecessary institutionalization. This was a landmark decision for the ASD community as it meant expanding resources including community housing and assistance with daily tasks (Center for Healthcare Strategies). The “looping effect” was utilized here as disabilities such as ASD interacted with societal norms, expectations, and negligence and thus resulted in expanded resources, especially for adults with autism. These cases provided a turning point for ASD rights and resources ensuring a higher quality of life for those with autism. 

The utilization of media to present autism to a wider audience breaks down many systematic barriers and stereotypes associated with ASD. In the show Arthur, the character George meets with Carl, who has autism. Despite Carl’s differences, they become fast friends and George gains a new perspective on how individuals view our world. Their friendship showed many viewers that those with autism do not need to be isolated from society and provide an intriguing view of life. The episode’s choice of the broadcasting channel, PBS, is especially significant as it is free-to-air and family-friendly ensuring an immense wide audience (Bailey). The last twenty-five years of autism advocacy have proven important in addressing many of the concerns and needs of those with ASD. 

After decades of hard work, we can begin to see the achievements of accessible resources for ASD permeate within our society. The increased awareness of autism and its symptoms led to a rework of its diagnosis criteria, leading to an increase in diagnoses. Autism was found to have both environmental and genetic factors therefore shifting the blame away from poor parent-child relationships (D’Astous, pp. 789–807). Considerable research on autism demonstrates that applied behavior analysis (ABA) interventions play a positive role by lessening symptoms of those with ASD, particularly children, while also reducing the future financial burden from medical costs. In addition, continuing education programs that focus on living skills reduce the societal barrier that adults with autism face while encouraging them to participate in ordinary daily activities. The United States Combating Autism Act of 2006 and Autism-Insurance Act of 2008 ensure ABA and therapeutic programs for those with ASD through government funding while also developing a committee for autism research (Dillenburger, pp. 134–51). These policies became a major stepping stone for an increasingly equitable contemporary global society but much is still left to be done. 

Advancements in autism-related assistance and policies stemming from influential court cases and forms of media and literature alleviate many of the concerns families had for their children with autism. The lessening reliance on institutionalization, increased use of effective therapeutic interventions, and 21st-century government policies positively impact the lives of individuals with ASD, by promoting social inclusion and removing community barriers. More work still needs to be done to ensure opportunities are available globally but we have made a lot of progress to ensure higher quality lives for those with ASD in the U.S. 

Works Cited

Bailey, Greg. Arthur: When Carl Met George. 9 Story Entertainment, 2010. 

Bazelon Center. “Katie A. V. Bonta | Bazelon Center for Mental Health Law.” Www.bazelon.org, www.bazelon.org/katie-a-v-bonta/.

Britannica, The Editors of Encyclopaedia. “Board of Education of the Hendrick Hudson Central School District v. Rowley”. Encyclopedia Britannica, 22 Jun. 2024, https://www.britannica.com/topic/Board-of-Education-of-the-Hendrick-Hudson-Central-School-District-v-Rowley. Accessed 1 December 2024.

Center for Healthcare Strategies. “The Olmstead Decision 25 Years Later – CHCS Blog.” Center for Health Care Strategies, 19 June 2024, www.chcs.org/the-olmstead-decision-25-years-later/. Accessed 1 Dec. 2024.

D’Astous, Valerie, et al. “Retracing the Historical Social Care Context of Autism: A Narrative Overview.” British Journal of Social Work, vol. 46, no. 3, Dec. 2014, pp. 789–807, https://doi.org/10.1093/bjsw/bcu131. Accessed 16 Nov. 2024.

Dillenburger, Karola, et al. “Lost in Translation: Public Policies, Evidence-Based Practice, and Autism Spectrum Disorder.” International Journal of Disability, Development and Education, vol. 61, no. 2, Apr. 2014, pp. 134–51, https://doi.org/10.1080/1034912x.2014.905059. Accessed 16 Nov. 2024.

Hacking, Ian. “Kinds of People: Moving Targets.” Proceedings of the British Academy, vol. 151, 2007, pp. 285–318. Accessed 17 Nov. 2024.

Heffernan, Daniel T. S. “Endrew F. V. Douglas County and Its Impact on Special Education Law.” Boston Bar Association, 26 Oct. 2017, bostonbar.org/journal/endrew-f-v-douglas-county-and-its-impact-on-special-education-law/.

National Institute of Mental Health. “Autism Spectrum Disorder.” National Institute of Mental Health, 2024, www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd.

Steinbeck, John. Of Mice and Men. 1937. Penguin Books, 1937.