Marginalization of People Diagnosed With Autism
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
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
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.
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 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
Lack of Resources to Train and Care for People Transitioning to Adulthood
Undervaluing the Need for Long Term Care
Lack of Understanding of the Disorder Hinders Accurate Diagnosis
Undervaluing the Need for Comprehensive Care for Those With Mental Health Issues
Social Justice Framework, Theory, and Methodology to Mitigate the Effects
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
Policy and Lobbying
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.
— 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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