People with autism have been treated unfairly in U.S. history. The stigma around people with disabilities has faded over time, yet people with special needs still struggle to obtain the educations and living standards they deserve.
What is Autism?
Autism is a minimally understood disability in the United States, both in terms of people’s understanding of the condition in general and scientific research on distinct causes and ways to fully treat the disorder. Autism is a disorder characterized by impairments in language and communication skills, impairments in social skills, and repetitive behaviors (“What Is Autism?”). Autism is currently diagnosed in roughly one out of every fifty-nine children in the U.S. (“Autism Facts and Figures”). Yet, people in the country who have the disorder rarely get the care and education they need. Unawareness of the issues people with autism face takes away from the political support needed to obtain adequate government funding for research for, proper care of, and adequate educations for people with autism.
For this research project, I wanted to delve into the history of the treatment of people with autism in the United States and what challenges people with autism still face in our country.
Because of my I-Search, which is a research paper students at my school do on topics that they are interested in, last year on Autism Spectrum Disorder (ASD), I already knew a bit about autism. Personally, I have always had an interest in mental health conditions. From my I-Search, I had already found a topic that I was passionate about and was excited to look at from a different angle, or from the historical perspective. Having a brother with autism has sparked my interest in the disorder and continues to make researching this topic meaningful, which actually led me to pursue this topic.
(For full personal interest essay, please click here.)
That brings me to my research:
A History of Inequality and Unfair Treatment
Historically, disabled people, particularly those with autism, have not been treated as equal members of society. For much of American history, people with special needs did not receive any education. Even after the enactment of federal laws protecting their right to education, many children with special needs still do not receive the same quality of education as their typically developing peers.
People with disabilities have a long history of being excluded and abused. In the 1930s, people with autism were often put into institutions and many families with disabled children were frowned upon and moved down in terms of social status. In fact, many were sent away to asylums where they were often abused (Raiti). In 1943, Leo Kanner, an Austrian-American psychiatrist, initiated the very harmful “refrigerator mother” theory, later popularized by Bruno Bettelheim. The refrigerator mother theory argued that parents, specifically mothers, of children with autism were so cold to their children that they caused their children’s behaviors and was often used in the 1950s to explain why children had autism (“History of Autism”). Bettelheim then published an article in the American Journal of Sociology in 1959, writing that the parents of children with autism probably deep down did not want their children and “for a good reason”, further illustrating the common belief at the time that people with autism were a stain on society (Bettelheim, 457). In the 1950s and 60s, however, attitudes toward people with disabilities began to shift and many became more tolerant of the disabled. While people tolerated the disabled, society did not really value the education of children with special needs until the 1970s.
Starting in the 1950s, awareness began to spread and multiple organizations and associations were formed to help people with autism and other mental disabilities as well as their relatives and friends. For example, in 1950, the National Association of Parents and Friends of Mentally Retarded Children (NAPFMRC) was founded, which was shortened to the National Association for Retarded Children (NARC) in 1953. In 1964, Bernard Rimland, an American psychologist, published Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior, arguing that autism could be attributed to biological factors rather than the refrigerator mother theory. A year later, the National Society for Autistic Children, later renamed Autism Society of America, was established by Rimland and other parents. That same year, the Elementary and Secondary Education Act was passed and was amended in 1966 to encourage states to expand their special education programs (“Timeline”).
The 1970s were an important decade for educational reform for disabled children. In 1972, the Pennsylvania Association for Retarded Children (PARC) sued the Commonwealth of Pennsylvania, and the Mills v. Board of Education of the District of Columbia case occurred. Both of these lawsuits involved the exclusion of children with disabilities from public schools, and in both cases, the disabled students won (“The Right to Education”). These cases lead to the momentous Education for all Handicapped Children Act of 1975.
The Education for all Handicapped Children Act guaranteed a free and appropriate public education for all children with disabilities in the “least restrictive environment” (“Timeline”). The act was later renamed the Individuals with Disabilities Education Act in 1990 (“Timeline”). Education for people with disabilities dramatically changed because of the act. By 1985, the federal government had spent 8.1 billion dollars on the education of people with disabilities and there were 4.3 million disabled students enrolled in public schools (Maeroff).
In the past 40 years, societal views on equal treatment of people with special needs and knowledge about the best ways to educate children with special needs have all continued to evolve. In 1990, the Americans with Disabilities Act was created, prohibiting discrimination against people with disabilities (“Timeline”).
(For full historical problem essay, please click here.)
An Underfunded and Understaffed System: Special Education’s New Obstacles
Even in today’s society, many people lack a proper understanding of special education and do not know that currently, special education lacks the resources it is supposed to be provided with and needs from state and federal government funding.
Admittedly, in 2015, special education spending comprised about 20% of total spending on public education, despite the fact that only 13% of all students actually were diagnosed with any special needs (Colin and Jalilevand). However, the difference between the spending for special education and general education is not one that indicates special education is taking more than it needs or deserves, but rather that public education is underfunded as a whole.
In addition to the shortage of funding for education, there is also a shortage of teachers in public schools and thus a shortage of special education teachers and specialists. There are not enough possibilities for people who want to work in special education to learn, which is resulting in this shortage of specialists required for many of the services children with accomodations need. Some of these specialists include school psychologists, speech pathologists, and BCBAs, or Board Certified Behavior Analysts. A lack of adequate funding in special education is the root of the problem, causing a lack of properly trained educators. Many programs designed to bring in these professionals are not funded enough, and becoming a qualified professional costs more as of now due to costs such as college educations (“NCPSSERS”). According to the National Coalition on Personnel Shortages in Special Education and Related Services, or NCPSSERS, “54% of speech-language pathologists (SLPs) report shortages in their schools,” and “82% of special educators and SISP,” or Specialized Instructional Support Personnel, “from across the nation report that there are not enough professionals to meet the needs of students with disabilities” (“NCPSSERS”).
The lack of funding in special education can be partially attributed to insufficient federal government spending. According to IDEA, or the Individuals with Disabilities Education Act, the federal government is supposed to provide 40% of the necessary funding for special education. However, the federal government is underfunding special education. For example, in the 2015-2016 school year, the federal government only spent 15.3% of the needed funding for special education (Griffith).
(For full current problem essay, please click here.)
Call to Action
“We have a responsibility to ensure that every individual has the opportunity to receive a high-quality education, from prekindergarten to elementary and secondary, to special education, to technical and higher education and beyond.”
While education for people with autism has been significantly improved in the last century, plenty can still be done to improve this education which still has many flaws. Funding for special education has gained headway compared to what it used to be; however, with the decline in funding for education as a whole, which includes special education and general education, the funding given to special education has declined as well. The lack of federal and state funding for public education has also created a shortage of special education teachers and specialists.
On an individual level, there are many things that can be done to support special education. Activism, including protests, can help to increase funding for education in general as well as funding for teachers and specialists working in special education. Voting for local measures that support increasing funding for education, as well as for political candidates, including the candidates in the upcoming presidential election in 2020, who support increasing funding for education, is another way to support special education. Individuals can also support people with autism in general or people with autism from lower-income families by volunteering with one of the many local organizations focused on working to help those with autism. One could donate to or volunteer at organizations such as the American Autism Association and Autism Speaks.
The Next Steps for Educating People with Autism
Increasing the funding for education on a federal level is an important step to giving children with autism a better education. Budgeting in different ways and redirecting funds from other areas, like the proposed wall between the U.S. and Mexico, can increase federal spending in special education and help the federal government to start providing the percentage of special education funding that it is supposed to under IDEA, which the federal government is currently not providing. Proposing different budget plans which prioritize education funding on a federal level would lead to an overall increase in education funding and would increase the funding of schools in lower income areas which as of now have relatively lower income taxes going toward education than in wealthier areas. Increasing the amount assigned to education in the federal budget decreases the amount these lower income areas would have to pay.
(For full solutions essay, please click here.)
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If you have any questions or comments you would like to share about this project, please comment below. Starting conversations about the issues that people with autism face is a great way to spread awareness!