Excerpt from NDGiFTS Project

Education

Written by Corey Hollemeyer

Reviewed by Nancy Pistol & Kyra Marcano

Autistic adults want to work to support themselves and being able to work is a quality of life issue. To be clear, the rate of unemployment for autistic individuals is terrible. A report from Drexel University authored by Roux, Rast, Anderson, and Shattuck (2017) stated that only 14 percent of autistic adults worked outside the home for pay from July 2014 to June 2015. Unfortunately, no data is available concerning how many autistic adults obtain a college degree, at a time when having a college degree is often necessary in order to obtain competitive employment. Undoubtedly, the passage of legislation regarding education of disabled people has played a key role in the fact that some autistic individuals have been able to complete college; however, there are widely cited poor completion rates. In addition, research into the lives of autistic adults has been limited.  

As discussed in an article by Villegas (2017), the federal public policy surrounding education of disabled people started in 1975. The Education for All Handicapped Children Act (EHA) made into law the right for handicapped children to receive an education. Prior to this, disabled children were not allowed at school. The next public policies enacted were the Individuals with Disabilities Education Act (IDEA) and the Americans with Disabilities Act (ADA), both in 1990 (Villegas, 2017).  

IDEA required an emphasis on the use of least restrictive environment (LRE) and mandated the use of individualized education programs (IEPs) (Villegas, 2017). (Please see appendices A and B for more information regarding the IEP process). LRE means that students should be placed in educational settings with their non-disabled peers to the maximum extent possible. IEPs are customized for each student, which consist of achievable objectives and goals. They are created by an IEP team, composed of special education teachers, parents, the student (if appropriate), and other involved parties such as relevant clinicians and advocates. The ADA makes discrimination of disabled people unlawful and is therefore another important factor in achieving equality in all areas of life for autistic people.

Because of the federal requirements set forth by the EHA, IDEA, and the ADA, school districts had to start offering certain healthcare services on-site if they are necessary for the educational success of people whose IEPs include these services. Two important therapeutic services for autistic students are speech therapy and occupational therapy. In autistic individuals, speech ability can range from non-speaking to developmentally age appropriate. Some of the common problems in verbal individuals are with articulation and pragmatic language usage.  

Because language usage is key to educational success, this health service is necessary for most of these students to be successful. Occupational therapy has to do with helping individuals to function as independently as possible by finding creative ways to adapt (sometimes with the usage of accommodations). For example, many autistic individuals are highly sensitive to sound—particularly, loud noises. Many solutions could be proposed such as managing the volume of an environment or allowing the individual to wear noise cancelling headphones when appropriate.  

The EHA, IDEA, and ADA legislations combine to form protections for people with disabilities in all areas of life but especially in the education and employment arenas. In the United States, part of living a healthy life includes the right for all people to receive an education and the right to be judged on personal merits when seeking employment for financial support. According to OhlmsteadRights.org’s article, “The American with Disabilities Act of 1990- ADA" (n.d.), disabled people have been discriminated against in the U.S. since its inception. Disabled children were banned from schools, and they were frequently removed from their families and permanently placed in institutions. During the civil rights movement, people began advocating for disabled people. This became known as the disability rights movement (OhlmsteadRights.org, n.d.). 

All three policies have played a role in guaranteeing an accommodative and appropriate education for disabled children. Each piece of legislation has gone a little further to secure rights for disabled individuals; however, whether or not the legislation has been effective in delivering positive outcomes for disabled individuals is a matter of debate. Part of the problem is that at age 21, disabled people age out of the special education system, according to Snow (2015). The multiple services and specialized help that they receive is cut off, and there is no system in place to take over when this occurs. This is referred to as the services cliff (Snow, 2015). 

Transition plans are supposed to be put in place, but this process is frequently neglected, and it serves no purpose if there are not enough employers prepared to provide a supportive framework. According to a 2015 Drexel University report by Roux, Shattuck, Rast, Rava., and Anderson, “most special education students say that employment is their primary intended outcome after high school” (p. 21). Unfortunately, this report also states that only 58 percent of autistic students had a transition plan in place by the age required by law (Roux et al., 2015).

As stated by the National Education Center for Statistics’ webpage, “Children and youth with disabilities” (2019), during the 2017-2018 school year, seven million children ages 3-21 were receiving special education services under IDEA. This means that a great number of children are being identified as needing special education services and are receiving an individualized education according to their needs. However, what good is any of this if disabled people and autistic individuals cannot get a job even after completing higher education? The ADA forbids disparate treatment of people with disabilities, but it has not been effective for autistics.

This determination is made by looking at the unemployment numbers for disabled people, and more specifically autistic individuals. A news release from the Bureau of Labor Statistics entitled, “Persons with a Disability: Labor Force Characteristics Summary” (2019), stated that the unemployment rate in 2018 for all disabled people was eight percent. This was twice the rate of those with no disability. To clarify, this unemployment rate of eight percent was based only on people who were actually looking for work within a four-week period prior to taking the survey. In addition, only about 20 percent of people with disabilities even work. This is in comparison to about 66 percent of non-disabled people who work.  

What must be stated about this situation is that many disabled people want to work but often give up after a lengthy and unsuccessful search for financially adequate employment. There are also low-income thresholds for some safety net programs. This can result in working for low pay but losing support. Essentially, this can mean no improvement in one’s financial situation by working in a low paying job. As already stated, the report by Roux et al. (2017), only 14 percent of autistic adults worked outside the home for pay from July 2014 to June 2015. Given the poor employment numbers associated with autistic adults, it is safe to say that the current policies are not enough.  

The report by Roux et al. (2017) cites a few reasons for why more research is desperately needed in understanding the life of autistic adults. The reasons given are: about 500,000 autistic children will become adults in the next 10 years, most of our lives are spent being adults, only 1 percent of all autism-related research spending is targeted toward adults, and the area of adult life has the least amount of available data for autistic people. This report had two goals relevant to this paper’s topic. The first goal was to learn more about some of the core attributes of autistic adults and their outcomes. The second was to understand differences in services utilization and outcomes in different subgroups of autistic individuals (Roux et al., 2017).  

The survey information that was analyzed in the report by Roux et al. (2017) was obtained from the Adult Consumer Survey (ACS), and the survey included 3,520 adults ages 18-64 with autism. Survey participants were recipients of developmental disability services through their respective state agencies. Because of this, this survey does not have the validity of a random sample; however, it still provides valuable insights into the lives of autistic adults. It is important to note that only autistics with a severe impairment are typically able to access developmental disability services; therefore, this study does not account for autistic adults who are ineligible for services (Roux et al., 2017).  

There are many interesting findings reported by Roux et al. (2017), one finding was a difference in spoken language usage among age groups of autistic adults. “Younger adults with ASD were more likely to use spoken language as a primary means of expression than middle aged adults with ASD” (p. 11). Given that this survey was conducted from 2014-2015, and middle age was defined as 45-64, this provides strong evidence that Early Intervention Services and additional therapies that went into effect due to IDEA have had a positive impact (Roux et al., 2017).  

IDEA was made law in 1990. Therefore, the youngest members of the middle age group would have been born in 1969. This was long before there were government supported Early Intervention Services. In addition, schools were not required to utilize an Individualized Education Program (IEP). Therefore, services like speech therapy were not taking place in the school environment.  

The survey defined young adults as 18-24 (Roux et al., 2017). The oldest adults in the young adult group would have been born in 1990—the year that IDEA went into effect. Therefore, all of the adults in this group would have been eligible for an IEP and likely also had speech therapy services as part of their program. The higher verbal language usage in this group reflects that.

There were other important findings. Of note, 25 percent of autistic adults reported they did not get all needed services (Roux et al., 2017). In addition, “half (51%) of adults with ASD had at least one health condition in addition to ASD” (Roux et al., 2017, p. 12). It was also found that “over half of adults with ASD [Autism Spectrum Disorder] had at least one mental health condition (including anxiety, mood disorder, psychotic disorder, and/or other mental illness) in addition to ASD” (Roux et al., 2017, p. 13). Finally, there is the very important finding (as already mentioned) that only 14% of autistic adults surveyed had a paid job, in spite of the fact that half of the unemployed surveyed want to find work (Roux et al., 2017).  

The findings in this report are quite bleak with the exception of being able to infer a correlation between the onset of IDEA and verbal language usage being significantly higher among younger autistic adults. Progress has been made here, and this justifies continuing the current approaches in regard to language development. Adults with autism are facing many challenges to employment. A significant number are not receiving needed services, and a significant number of these individuals have another health condition or mental health condition (Roux et al., 2017). Having just one of these problems would be a challenge but adding comorbid health and mental health conditions means that a highly coordinated effort among professionals in these areas will be required to have a streamlined and holistic approach to ensuring employability of autistic people.  

From an economic standpoint, an article by Buescher, Cidav, Knapp, and Mandell (2014) stated that autism support services for a person without a cognitive disability costs the United States $1.4 million over each individual’s lifespan. This is a total of $232-262 billion dollars annually. In addition, most of this money is spent on adults—about $175 billion compared to $61 billion for children (Buescher et al., 2014). These costs are staggering. Better and more efficient solutions need to be found and research completed to discover what exactly is hindering these individuals from finding employment.  

Part of the diagnostic criteria for autism is an impairment in social skills and communication. As discussed in another prior section of this paper, there has been tangible progress in the number of autistic people who primarily use verbal language compared to the past. This overcomes one huge potential barrier to employment. However, anecdotal evidence shows that most autistic people have a great deal of difficulty in preparing a good resume. Then, if they are fortunate enough to get an interview, they lack the social skills that are typically expected in an interview situation. Outreach to corporations needs to be done in order to educate human resources and hiring managers about what to expect. In addition, an individual’s behaviors should be viewed in context and an objective determination made about whether those behaviors really would affect job performance.  

The expected result of the current policies in place are better educational outcomes for students. As some autistic people are able to graduate from college, these policies have some good effects in that regard; however, this brings up a new question. What is the purpose of education? It is not enough to learn how to be a good student and adapt to the classroom. The end goal of these interventions and efforts should be to help create employable adults who are able to live as independently as possible and who can financially support themselves as much their ability allows. In conclusion, progress has been made over the last 40 years towards improving the quality of life for autistic individuals. But, given their unemployment rate, much work also remains undone.