The majority of students entering colleges and universities attended public high schools. Some of these students received accommodations throughout their elementary and secondary education experiences, while others received fluctuating support during the K-12 experience. This is not unusual because public school districts must decide how to comply with state and federal mandates to meet the needs of autistic students, while at the same time struggling with the shifting definitions of autism.
Universities are affected by public schools in two ways: first, students are often labeled autistic by public schools and, second, these students become accustomed to the mandated personalized educational approach public schools offer to students with any recognized disabilities. Students bring their experiences to the university, assuming there is a similarity between the high school and university educational environments. This places a burden on the universities these students enter; false expectations can lead to conflicts between the new university student and the university that might have recruited the student based on grades and test scores obtained in part due to accommodations.
As students enter universities, they will find the Americans with Disabilities Act and its protections are not the same as the Individuals with Disabilities Educations Act and its mandates. Public schools are legally required to help all students graduate from high school; universities are only required to remove unreasonable barriers that unfairly discriminate against students. The distinction is not minor: an autistic student is expected to attend the same classes, complete the same work, and demonstrate the same skills as his or her peers within a university degree program.
Schiappa (2003, p. 171) reminds us that the U. S. Supreme Court considers ADA cases based on the “fundamental nature” of an activity. The fundamental nature of a university education is not the same as a high school education. In the 2001 case of PGA Tour, Inc. v. Martin, the Court decided 7-2 that allowing a disabled golfer to use a golf cart did not alter the fundamental nature of golf. Adam A. Milani (1996) analyzed ADA decisions relating specifically to higher education. Referencing Alexander v. Choate (1985), in which the Court decided Section 504 of the ADA requires a balance between “the need to give effect to the statutory objectives and the desire to keep section 504 within manageable bounds,” Milani suggests colleges have a great deal of flexibility in setting requirements. In 1979, the Court recognized in Southeastern Community College v. Davis that a deaf student was not entitled to special modification in a nursing program.
In the K-12 system, autism is a disability that usually entitles one to special services and accommodations. At the university level, a school might define autistic individuals as protected from discrimination, but then decide that high-functioning autistic students and those with Asperger’s Syndrome are not entitled to special services. This is a delicate distinction, one students and parents might not understand without the college or university explaining what a student can expect from a particular institution.
In deciding if a student is disabled, some universities will accept the label of autistic that accompanies a student from his or her secondary school. Universities are also allowed to question these assigned labels, in part because the definition of autism is not well defined by the IDEA mandates. A student might exit high school labeled autistic and then have the label removed by a university. Universities will be asked to defend how and why a definition changes from one context to another. The following section addresses why the IDEA definition is unstable.
Required Labels
The Office of Special Education Programs (OSEP) of the U.S. Department of Education oversees the reporting of special education statistics. The OSEP’s October 2006 report on IDEA data collection explains just some of the complications resulting from the way Congress dictates, however vaguely, definitions. Extremely similar terms had different definitional criteria. Researchers are warned by the OSEP to consider how definitions and reporting rules shift over time “before analyzing and reporting on these data” (2006). No currently counted disability category aligns with a category reported before 1991.
In 1990, the Education of the Handicapped Act (EHA) was reauthorized by Congress. In the reauthorization, the name of the law was changed to the Individuals with Disabilities Education Act (IDEA), and the names of all disabilities were also changed. (OSEP, 2006, p. 1)
| EHA Reporting Categories 1976–77 through 1990–91 |
IDEA Reporting Categories 1991–92 through 2006 |
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| Note: The categories are listed in the same order as reported on OSEP forms. | |
Though the OSEP collects data from the states, territories, and other U.S.-affiliated schools, it does not determine how states themselves collect data from schools. This leaves states to establish standardized definitions for conditions such as autism or, as is more often the case, states leave it to schools to establish definitions. The resulting data, as gathered by the OSEP, are not statistically valid for any epidemiological analysis and certainly raise questions about the distribution of special education monies from the federal government to the states.
Who Does the Labeling
What is most astonishing is that in many districts principals, not mental health professionals, decide how to report special education enrollment figures to comply with IDEA (Grinker, 2007; Szasz, 2003). Szasz quotes Linda Schrock Taylor, a public school administrator from Michigan, who claims “public schools are encouraged to believe that special education teachers provide medical services” (Szasz, 2003, p. xvii).
It is interesting that among the states with the highest reported rates of autism are California, Oregon, and Minnesota. In fact, Minnesota is the only state to consistently report students in high school as “new cases” of autism (Grinker, 2007). California, often cited as evidence of an autism epidemic, has had school districts include Attention Deficit Hyperactivity Disorder under the autism category. Rita S. Eagle, Ph.D., of the Harbor Regional Center in Torrance, California, wrote in the February 2004 Journal of Autism and Developmental Disorders:
…[I]t appears that the autism diagnosis is being stretched to include an ever-widening range of clinical presentations, not just among children with limited cognitive resources, but among children with normal or above average intelligence as well....
Some researchers have suggested that money encourages schools to classify students as autistic. The associated studies find that when a category of disability receives new funding, more students in public schools are soon classified as having the particular disability.
Given the resources that accompany special education eligibility, it has been argued that the creation of this eligibility category helps, at least in part, to explain increased rates of this disorder (Brock, 2006, p. 27).
If the definition of autism is being stretched by public education, it is having the unintended consequence of increasing autism statistics and leaving the impression of an epidemic. At the same time, the IDEA category codes do not include a category for ADHD or any number of other conditions. Reading the list of approved disability codes, it appears that code assignments cannot match the conditions of every disabled student receiving special education services. The definitions behind these codes are, therefore, flexible out of necessity. Educators, wanting to provide individualized services to students, must assign these students an IDEA category. As a result, autism might be a broader and broader term based on data reports. Definitions have cultural significance. Once a student is labeled as autistic by the K-12 system, regardless of severity of the disability, the student is forever autistic in federal data.
A university might prefer the DSM-IV or another formalized diagnostic criteria for an official diagnosis of autism. This preference is accepted under the ADA, which grants colleges and universities the ability to determine what is an impairment requiring special accommodations. The K-12 public education system is less likely to adhere to the DSM-IV because the vague language of the IDEA controls special education eligibility.
In their review of published case law addressing the eligibility of students with autism for special education, Fogt and her colleagues observed that “adjudicative decision makers almost never use the DSM-IV-TR criteria exclusively or primarily for determining whether the child is eligible as autistic” (p. 211). Although DSM-IV-TR criteria were considered in just over half of the cases reviewed, all but one case acknowledged IDEA as “controlling authority” (p. 211). Thus, when it comes to special education, it is state and federal education codes and regulations (not DSM-IV-TR) that drive eligibility decisions. (Brook, 2006, p. 8)