Classifying Students as Autistic
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 Rehabilitation Act of 1973 and the ADA require 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.
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)
Legal Mandates for Access to Education
- Americans with Disabilities Amendments Act (ADA) of 2008; Section 202/Title II: Accessibility of Technologies.
- Higher Education Opportunity Act of 2008 added new provisions to the Higher Education Act of 1965.
- Rehabilitation Act of 1973; Sections 504 and 508 extended by courts beyond data access to course access in 2005, 2007.
- Individuals with Disabilities Education Act (IDEA) of 2004; applies to higher education if any K–12 students have dual-enrollment at the institution.
It is essential for parents, students, and our K12 institutions to understand there are limits to what can be expected at a university. Consider the following passage from a legal analysis of higher education and disability accommodations:
While schools are required to provide reasonable accommodations to qualified students and bear the costs, schools are not required to provide accommodations that would fundamentally alter the nature of a program, lower or waive essential academic requirements, or result in undue financial or administrative burdens.Autism is a Legally Recognized Disability
— Milani, 1996, p. 4
There is no question, according to longstanding federal laws, that autism is a recognized disability. Autism is mentioned specifically in the following education-related laws:
- The Children’s Health Act of 2000
- The Individuals with Disabilities Education Act (IDEA) of 2004
- Combating Autism Act of 2005
- Higher Education Opportunity Act (HEOA) of 2008
Americans with Disabilities Amendments Act of 2008
ADA was updated in 2008 in ways that might directly affect a student with communication impairments.
- Updated the ADA of 1990 in an attempt to clarify definitions and mandates.
- Disability is “a physical or mental impairment which substantially limits one or more of such person’s major life activities.”
Revisions to the ADA expanded accommodations to include any technologies widely used at the institution. For example, many colleges and universities have students register for courses online. Any online system must be accessible for all students.
Title II (Section 202) of the ADA requires universities make their facilities, programs, services, and activities accessible to the disabled. The ADA interprets information technology and related communication as part of the aids and services that must be reasonably accommodated for the needs of disabled students.The complication for parents and students is understanding that a university does not have to offer the same level of supports K12 schools typically offer. This is because IDEA and similar legislation applies only to K12 and disabled students, up to age 21, receiving services from K12 schools.
— Bradbard and Peters 2010, p. 12
- States, individual universities, and the courts define “reasonable” on a case-by-case basis.
- Financial constraints, available personnel, and other factors can be considered by the university in declining services.
- Court cases have tended to favor colleges and universities under the doctrine of “manner and nature.”
- A degree must represent equal accomplishment and consistent basic knowledge among all students receiving the diploma.
- ADA was passed as a “clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities.”
- Finding: Based on ADA Title II, public entities are prohibited from discriminating against “qualified” persons with disabilities in the provision of a public service, program, or activity.
- Sections define accommodations clearly and with specific examples.
- Section 508 includes computer access and design considerations mandated by federal usability regulations.
- Similar to international Web standards for accessibility.
Section 504 of the Rehabilitation Act of 1973 requires a balance between “the need to give effect to the statutory objectives and the desire to keep section 504 within manageable bounds.”Laws and regulations normally apply to an employer, not necessarily employees. For example, a waiter cannot be sued for not accommodating a blind diner, but the restaurant could be sued. However, and this is important, the rights of disabled students are protected by regulations that mention instructors specifically. A professor at a university is considered responsible for his or her classroom. This now includes online courses.
— USDC Alexander v. Choate (1985)
Section 508 could be interpreted as applying to individual faculty members who are an integral part of such [publicly funded] universities. Thus, individual faculty members could be held liable (or responsible) for complying with the legal mandates of Web accessibility for the individual Web sites they create and use for instructional purposes.Family Educational Rights and Privacy Act
— Bradbard and Peters 2010, p. 2-3
FERPA, and some state laws, limit the sharing of information between disability services, instructors, and parents. As a professor, I cannot discuss a student’s disability with another professor without a clear and necessary purpose. I also cannot discuss an adult student with his or her parents. There are all manner of complications with FERPA, including a struggle to determine when it is necessary to violate confidentiality to ensure safety.
- Federal law limits access to grades, finances, and discipline records.
- Federal website is up-to-date: http://www.parent.umn.edu/ferpa.html
- “FERPA requires that access to a college student’s records must be granted by approval of the student.”
- Disability specialists do not disclose specific conditions.
- FERPA rights apply to the disabled; no university employee may discuss or disclose the disability to other employees or students.
- No matter what the law is, a student can give any information to his or her family.
- There is a “safety of student and/or others” exemption for disclosure.
Some disability services expect a sudden and rapid expansion of the number of students qualified for services when the new Diagnostic and Statistical Manual of the APA is published. The DSM-V is not finalized and its affects are still being debated by mental health professionals.
- Regulatory agencies, including the Dept. of Education, use the DSM-IV to define disabilities.
- DSM-V updates “Autism Spectrum Disorders” — potentially expanding the number of individuals diagnosed.
- Universities must accept DSM-V criteria or risk losing federal funding.
While the DSM-V is not perfect, and many of scholars remain critical of its approach, courts and regulators tend to defer to the DSM as a minimum guide for diagnoses. A college or university can offer greater flexibility, but the DSM is likely to serve as a baseline in any challenge to the accommodations provided — or not provided — by an institution.
It is best for institutions receiving any federal supports, to err on the side of caution. Take no chances, basically, since the implications of a ruling against a university include the loss of federal funding. IDEA experiences reveal that regulators and courts do refer to the DSM, whatever the current edition might be.
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 because the vague language of the IDEA controls special education eligibility. However, regulators do consider supports received in the past when deciding if a university is meeting the needs of student. The DSM cannot be ignored; it is best to be flexible and consider the DSM a minimum standard.
Asserting Your Rights
Disclosure RequirementsThe Department of Education regulators and several court rulings have suggested that a disabled student can only claim discrimination or bias if faculty were made aware of a disability. This means the student must be a self-advocate and establish that he or she qualifies, legally, for accommodations.
- Faculty can only be expected to recognize “obvious” physical disabilities.
- Students with “non-obvious” disabilities must disclose to a designated disabilities specialist at a college or university to qualify for the protections available.
- Failure to disclose forfeits some legal rights and protections at universities.
Eligibility for Services
A student receiving services in the K12 setting is not qualified automatically for similar services at a college or university. Universities are allowed to challenge eligibility and require new evidence of qualification for services.
A student receiving services in the K12 setting is not qualified automatically for similar services at a college or university. Universities are allowed to challenge eligibility and require new evidence of qualification for services.
A school plan such as an IEP (individualized educational plan) or a 504 plan is insufficient documentation in and of itself but can be included as part of a more comprehensive evaluative report.Universities typically offer no assistance at all when a student needs to re-qualify for services. Why would a university require re-evaluation? Isn’t a school psychologist’s letter sufficient? It turns out, a “school psychologist” is not the same as a “psychologist” in many states.
— Student Disability Services, University of San Francisco
School psychologists’ training does include study in education and special education, but compared to clinical psychology, there will likely be less emphasis on psychopathology and long-term therapy. Most states will only license private practice at the doctoral level, while most states credential school psychologists at the specialist level (60 graduate semester credit master’s degree).The testing for eligibility can be expensive and is rarely available via insurance. Many insurance policies that do cover testing and diagnoses of disabilities will not cover a non-essential test that is only for the purposes of college accommodations. If a teen was diagnosed four years ago, the admitting college can still demand newer diagnostic results. Most insurance will not cover this.
— National Association of School Psychologists, 2011 (http://www.nasponline.org/)
A student requesting reasonable accommodations must provide appropriate documentation and then participate in an assessment interview. The guidelines for documentation of physical and learning disabilities will be provided in the interest of ensuring that evaluation reports are appropriate to document eligibility and support requests for reasonable accommodations. Staff from Disabled Student Services are available to consult with students and evaluators regarding these guidelines.
The University does not provide nor pay for services rendered to meet the above documentation requirements. In order to ensure that services and accommodations are matched to the student's changing needs, students must provide documentation that is no more than three years old. This may require that students undergo reevaluations if their previous evaluation was more than three years ago. Comprehensive testing is not required for a reevaluation. A student need only be retested for his/her previously diagnosed physical or learning disability. The issue of what specific retesting is required is left to the discretion of the student's physician or other qualified evaluator.This policy is roughly the same at most institutions of higher learning. However, the written policy can be waived. For example, RMU sometimes allows a letter from a physician to substitute for re-evaluation if the original testing is within five years of university admissions. Schools are flexible — never assume they will not work with a student and his or her family.
— Robert Morris University, PA
Self-Advocacy is Legally Mandated
The federal government reminds universities that disclosure is the responsibility of each student. In a 2009 report, the Government Accountability Office issued the following statement:
[It] is the responsibility of post-secondary students to identify themselves as having a disability, provide documentation of their disability, and request accommodations and services.Only as an example, Robert Morris University, like most institutions of higher education, reminds students of this legal responsibility in the student handbook and on the RMU Student Services website:
— GAO, 2009, p. 5
It is the student's responsibility to distribute the accommodation sheets to the appropriate instructors as soon as possible. Failure to distribute accommodation sheets may cause delay in the provision of services. The student must also keep a copy of the accommodation sheet for his/her records and deliver a copy of this form to his/her academic advisor.Basic Services of a Disability Specialist
— Robert Morris University, PA
If a disabled student has to be a self-advocate, what does a disability specialist do? The DS expert helps students navigate the requirements of the institution — and every college or university is different.
- Provides letters or e-mail to faculty to document notification, though specific diagnoses are not disclosed.
- Determines which accommodations are essential and proper to meet student needs.
- Schedules special testing, study, or research accommodations, including adaptive technology access.
Students, their parents, and their high school counselors should be proactive when considering a college or university. Obtain current documentation of any disability:
- Autism Spectrum Disorder
- Learning disabilities, often co-morbid with ASDs
- Physical limitations, such as seizure disorders commonly co-morbid with ASDs.
The more you know about the campus, the better, too. Never assume a campus that claims to be accommodating and proactive actually is. Research the institution as much as you can.
ASD Specialists
I advise students to ask if the disability office on campus has a dedicated ASD expert.ASD Specialists
- The presence of autism spectrum specialists within departments and in disability services is an encouraging sign.
- Learn where these individuals are, and consider contacting them before you accept admissions to a university.
- Most experts will meet with you and offer a candid assessment of the campus.
Unfortunately, too many of the students with ASDs with whom I have worked have needed to deal with conflict resolution and offices of academic integrity.
- You should know how a university deals with conflicts or “disruption” charges.
- Student-led CR unlikely to appreciate the nature of autism spectrum disorders.
- Mediation that circumvents disability service personnel can be problematic.
- Some systems fail to provide an advocate for students with special needs.
Individuals with Disabilities Education Act
IDEA 2004 & Autism
Public Law 108-446
108th Congress
An Act
To reauthorize the Individuals with Disabilities Education Act, and for other purposes. <<NOTE: Dec. 3, 2004 - [H.R. 1350]>>
Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled, <<NOTE: Individuals with Disabilities Education Improvement Act of 2004. 20 USC 1400 note.>>
(602)(a)(3) Child with a disability.—
(A) In general.—The term ‘child with a disability’ means a child—
(i) with mental retardation, hearing impairments (including deafness), speech or language impairments, visual impairments (including blindness), serious emotional disturbance (referred to in this title as ‘emotional disturbance’), orthopedic impairments, autism, traumatic brain injury, other health impairments, or specific learning disabilities; and
(ii) who, by reason thereof, needs special education and related services.
(662)(b)(2)
(G) Developing and improving programs to train special education teachers to develop an expertise in autism spectrum disorders.
SEC. 663. Technical Assistance, Demonstration Projects, Dissemination of Information, and Implementation of Scientifically Based Research.
(a) <<NOTE: Grants. Contracts. 20 USC 1463.>> In General.—The Secretary shall make competitive grants to, or enter into contracts or cooperative agreements with, eligible entities to provide technical assistance, support model demonstration projects, disseminate useful information, and implement activities that are supported by scientifically based research.
(c) Authorized Activities.—Activities that may be carried out under this section include activities to improve services provided under this title, including the practices of professionals and others involved in providing such services to children with disabilities, that promote academic achievement and improve results for children with disabilities through—
(8) focusing on the needs and issues that are specific to a population of children with disabilities, such as providing single-State and multi-State technical assistance and in-service training—
(D) to schools and personnel providing special education and related services for children with autism spectrum disorders;
Special Education and Autism
IDEA/USDE 2005
According to Individuals with Disabilities Education Improvement Act (IDEIA or IDEA) 2004 regulations [US Department of Education, 2005 (c)(1)(i)], eligibility for special education services as a student with autism is defined as follows:
1. Autism means a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age three that adversely affects a child’s educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotypical movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences.
i. Autism does not apply if a child’s educational performance is adversely affected primarily because the child as an emotional disturbance, as defined in paragraph (c)(4) of this section.
ii. A child who manifests the characteristics of autism after age three could be identified as having autism if the criteria in paragraph (c)(1)(i) of this section are satisfied.