Marginalization of People Diagnosed With Autism
By Devin Reul, MSW, and Trista Yates, MSW
Social Work Today
Vol. 23 No. 3 P. 22

A Social Justice Action Plan

People who are diagnosed with autism spectrum disorder (ASD) face many different forms of oppression and are subject to ableist assumptions, stereotypes, and discrimination during their lives. Even with systems designed to help and information available to educate others, many with ASD still struggle to be accepted. The focus of the social justice action plan we propose is on their struggles with the five faces of oppression that lead to the success of these systems in oppressing individuals with autism. These are identified as exploitation, marginalization, powerlessness, cultural imperialism, and violence.1

Etiology, Pathology, and Prevalence
ASDs are complex neurodevelopmental illnesses that have piqued the interest of scientists from a variety of disciplines. An illness or disorder’s prevalence is significant for medical and sociological reasons. ASD affects roughly 60 million people globally, according to current estimates.2 Due to the nature of the condition and its vast spectrum, diagnosing and documenting these individuals are difficult. Many nations lack epidemiological data on ASD, and several epidemiological studies on ASD have substantial methodological problems, but the available data show the prevalence of ASD has increased over time.2

ASD can be syndromic, often associated with chromosomal abnormalities or monogenic alterations (ie, occurring from Rett syndrome), or nonsyndromic. One in 54 children in the United States is diagnosed with ASD. The diagnosis is higher in boys, with a male-to-female prevalence ratio of 3.5, and the prevalence in race is similar. Of those children, 53% have an intellectual disability.3 There are no diagnostic markers for ASD, and the diagnosis is based on “repetitive behaviors, and impaired social communication and interaction,” but several pathomechanisms, such as alterations in brain development and function, and synaptic defects, have been proposed.4

The Five Faces of Oppression
On the face of it, there may not be any identifiable reason for the population to be oppressed. However, the pathology and accompanying behaviors and traits can impair functioning, placing the population at a higher risk of oppression. Possibly the most prolific of these oppressive techniques is marginalization. From bias in provider language when dealing with children with autism5 and exclusion in school6 to marginalization in adulthood when disclosure proves troublesome,7 those in this population struggle with being heard and seen. Conformity to the mainstream is often the expectation for those with autism,8 and as a result, their unique traits and personalities can be suppressed.

Developed powerlessness has occurred through therapeutic interventions created to ensure conformity.9 Physical violence, too, occurs against people in this population. Approximately nine in 10 autistic women have been the victims of sexual violence.10 There are several predictors of bullying and victimization, including race, household income, social and communication skills, and self-concept. While cultural imperialism is not necessarily present, race and ethnicity play a part.11 Pearson and Meadan12 discuss the intervention of children with autism in the African American community and find that intervention in this population is more difficult given the stigmas within and without the communities.

Consequences
Due to the nature of oppression and marginalization that those on the autism spectrum experience, there are many potential consequences, including societal, familial, interpersonal, and intrapersonal issues, such as those pertaining to employment and socioeconomic status, and physical and behavioral health.

Individuals with autism have historically been subjected to discrimination and obstacles that have denied them all of their civil and human rights.13 Due to this denial, people with autism have experienced poverty and marginalization at disproportionately higher rates.13 As a result of communication and social interaction deficits, adults with ASD have difficulty participating in the labor force and obtaining and holding appropriate professional positions.14 According to studies, there are high rates of unemployment and insufficient employment.14 However, autism and its traits are not the true issues holding individuals back from work; it’s the lack of inclusion that hinders their progress. Research focuses on ways individuals with autism can adjust their personalities and force themselves into uncomfortable social interactions in the workplace. However, it appears there’s little to no research exploring adapting workplace environments and expectations to be more inclusive of those on the autism spectrum.

ASD affects all aspects of affected individuals’ lives and the lives of those around them. Those with the diagnosis require extensive care, typically from various specialists and health care professionals.15 Given that early intervention has been shown to improve outcomes in children with ASD, the lack of services and large wait lists for those that exist are particularly problematic.15 People with ASD and their families continue to be at significant risk for unmet health care needs due to the complexity of ASD and the lack of professionals to satisfy the demand.15 This is particularly true in less developed or rural parts of the United States.15 This could worsen common ASD physical health issues including obesity and common ASD behavioral health issues such as aggression, which can become problematic intrapersonally, interpersonally, societally, and within the family.

The Social Security Administration recognizes conditions like autism as potentially disabling and may be able to qualify a guardian or child for Social Security Disability benefits through one or both of the Social Security Administration’s disability programs.16 However, the application process is not inclusive. Those on the spectrum and their caretakers seeking these benefits must have time to research the various options and fill out the various forms. Additionally, the majority of the applications are now located solely online, only in English or Spanish. Families of lower socioeconomic status may not have the time, education, and other resources needed to apply for this assistance, which may leave a large portion of those with ASD without much-needed financial assistance and therapeutic resources.

Root Cause Analysis
The focus here is the marginalization of people who are on the autism spectrum. This marginalization occurs in many ways and results in high unemployment and homelessness,17 substance use,18 health care restrictions,19 ineffective service delivery,20 and, ultimately, oppression,21 and fear.22

The root causes of marginalization—presented in order from the most micro to the most macro level—are inability to integrate into society or the hindrance to successful integration, lack of resources to properly train and care for people who are transitioning to adulthood, lack of understanding of the disorder, lack of diagnosis or late or incorrect diagnosis, and, ultimately, the undervaluation of the need for comprehensive, long term care for those with mental health issues.

Hindrance to Successful Integration
The problem of hindrance to successful integration into society appears in many different forms. This includes a difficult time for those diagnosed with ASD transitioning into adulthood,23 finding and being supported in independence,24 and restrictions to family-directed case coordination with behavioral treatments via specific Medicaid waivers.25 Without successful integration skills, practice, and support, those with ASD can be unequipped for life in the outside world.

Lack of Resources to Train and Care for People Transitioning to Adulthood
Unsuccessful integration into society is further identified as the lack of resources to properly train and care for people with mental health diagnoses who are transitioning to adulthood. Identified as a key player in the administration of funding to services, without the resources and funding provided by agencies like the National Institutes of Health,26 people diagnosed with ASD are left empty-handed as they transition to adulthood. Another valuable program that plays a significant part in helping to fund the goals of successful integration and reduction of marginalization and oppression is special Medicaid waivers.25

Undervaluing the Need for Long Term Care
The lack of resources and funding stems from an undervaluation of the need for long term care and a lack of understanding of how this spectrum of disorders can burden providers,27 resulting in an inadequate number of people willing to work with this clientele. Long term care is identified as a necessity for many of those in this population, and if that need is not valued, the ultimate goal of caring for the population is overlooked.

Lack of Understanding of the Disorder Hinders Accurate Diagnosis
The deeper cause of the undervaluation of the need for long term care is a lack of understanding of the disorder itself. This results in diagnostic errors and poor quality of services to affected clients. As Putkuri et al28 suggest, good intentions on the part of therapists and providers are not sufficient for treating populations with mental health disorders. There is a significant lack of training, and without substantial improvement and additional services, the population suffers. Substantial improvements must include effective case management and more comprehensive services.

Undervaluing the Need for Comprehensive Care for Those With Mental Health Issues
All of these issues are rooted in the undervaluation of the need for comprehensive care for those with mental health issues. Whether this root is the result of obstacles to funding29 or any number of other reasons, mental health issues are not given their proper place in the spectrum of important issues that have an effect on the population as a whole.

Social Justice Framework, Theory, and Methodology to Mitigate the Effects
Critical Disability Theory (CDT)—the goal of which is to analyze disability as a cultural, historical, relative, social, and political phenomenon—can be utilized to inform practice and mitigate the effects discussed previously. The theory involves scrutinizing not bodily or mental impairments but the social norms that define particular attributes as impairments as well as the societal factors that connect specific communities with stigmatized attributes.30 Marginalization and oppression of individuals with ASD stem from the definition of social norms and stigmatized attributes. Critical disability studies seek intersectional analyses of the ways that various oppressive systems linked to social identity categories converge around disability through a focus on ableism.31 Additionally, critical disability theorists do not want their insights to be confined to the academic world and so focus on activism.32 This theory could evaluate and affect real change to employment, health care, and service delivery issues present in the lives of those with ASD.

CDT should be utilized by all practitioners to effectively and efficiently diagnose and provide service to those with ASD. It’s recommended that communities and organizations evaluate, identify, and challenge social norms that lead to discrimination against those with ASD; evaluate accessibility factors influencing programming/social services for those with ASD; and utilize CDT to lobby for change and new legislation for funding people with ASD who are transitioning to adulthood.

Social Norms and Accessibility Factors
In attempts to evaluate and measure inclusivity, companies, and organizations could utilize disability assessment tools such as the Disability Equality Index (DEI). The DEI33 is a thorough benchmarking tool that helps businesses develop a roadmap of quantifiable, practical actions they can implement to achieve disability inclusion and equality. Assessment tools can be used by organizations to encourage ongoing conversation and organizational change.34 The results of the assessments can be used to identify areas that need more investigation or to carry out ongoing monitoring.34 These assessment tools and CDT could help shift the focus from adjusting the person with autism to fit an environment to adjusting the environment to fit the person with autism. In Fenelon’s research,33 a large majority of employers (95%) and workers (83%) agree that these assessment toolkits and inclusion programs can be effective in creating diverse, equitable, and inclusive companies and organizations.

Policy and Lobbying
Most programming and services for those with ASD end for individuals 18 and older, with few extensions to age 21. Even though people with autism spend a much greater percentage of their lives as adults, less than 2% of all autism funding is focused on adulthood and aging.35 About one-half of autistic adults struggle with aggressive, self-destructive behaviors as they age, and about one-half are unemployed.35 This is the disability group with the lowest employment rate.35

The Individuals with Disabilities Education Act (IDEA) requires schools to provide the support needed post high school to the “best of their abilities.”13 This requires that each student’s Individualized Education Program process must include transition planning services for all special education students at age 16.13 However, the funding and direct services available through IDEA are not available once a student has received a high school diploma or is aged out of the school system.13 Other governmental supports, such as the Michelle P. Waiver, end once children reach adulthood. At this point, they can apply for Medicaid and Disability/Social Security Income, but they have to fall under the category of “severely disabled” to qualify. Qualifying for the income does not guarantee that the income will cover the cost of or go toward much-needed services such as occupational therapy, community living support, collegiate education support, case work, driver’s education, and job coaching. This encourages a cycle of nearly inescapable poverty and institutionalism.

To begin to tackle this issue, it’s necessary to lobby for policy change surrounding qualifications of disability income. Additionally, the creation of long-term services or extension of services would prove beneficial. Further solutions may include the creation of a nonprofit organization to create and fund services. Lastly, matters could be brought to local, state, and federal politicians to encourage them to create and fund governmental services. For each of these solutions, it’s recommended to form a group of supports with a set goal and measurable action plan, including evidence-based practice and funding considerations.

Conclusion
People diagnosed with ASD face many different forms of oppression and are subject to ableist assumptions, stereotypes, and discrimination throughout their lives. Even with systems designed to help and information available to educate others, many with ASD still struggle to be accepted. To mitigate oppression, corrective action is recommended in the form of addressing current policies and social norms and lobbying for change within systems.

— Devin Reul, MSW, is a recent MSW graduate from Spalding University in Louisville, Kentucky, and a frontline, ongoing worker in Kentucky’s child welfare agency. He has 10 years of experience in the clinical work and case management areas of the social service field. His work has focused on families struggling with substance use and field worker retention.

— Trista Yates, MSW, is a recent MSW graduate from Spalding University in Louisville, Kentucky, and a target case manager at Seven Counties Services. Her experience and passions include working with struggling and at-risk adolescents. Growing up with a brother diagnosed on the autism spectrum also fuels her fire for research and advocacy pertaining to the pattern of cessation of care for persons (with any diagnosis) at 18 years old.

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