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Autism and Higher Education Rights

The following is an outline I use when speaking to faculty, students, and parents about autism spectrum disorders and the legal rights of students within the university. My last post on university access and students with ASDs resulted in a conversation more about diagnoses than services, so I hope this helps clarify the nature of the university experience.

I will expand and edit this post if necessary and as information changes. I would rather update this post than have "outdated" information online in the future.

These are presentation notes, not an essay or academic article. Still, the information should be helpful.

Scope of the Challenge
There are many students entering our colleges and universities with appropriate documentation of autism spectrum disorders. Proper documentation legally qualifies a student to some supports from the school.
  • Post-secondary students with disabilities represent 11 percent of enrollment (GAO, 2009). 
  • High-functioning, college-capable individuals with autism represent 40 percent of ASD diagnoses.
  • From 0.8 to 1.1 percent of U.S. children are estimated to meet the criteria for ASD diagnoses.
  • Could represent 25 percent of legally disabled university students within 20 years. 
Legal Mandates for Access to University Courses
  • 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 only if any K–12 students have dual-enrollment at the institution.
Compliance with Laws and Regulations
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.
— Milani, 1996, p. 4
Autism is a Legally Recognized Disability
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
Not all federal education laws and regulations apply to university settings. In some special cases, however, they do. For example, if a university has an arrangement to offer college-level courses to local high school students, those students are still covered by all K12 regulations.

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.”
ADA 2008 Revisions: Title II, Section 202
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.
— Bradbard and Peters 2010, p. 12
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.
  • 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.
Association for Disabled Americans, Inc. v. Florida International University (2004)
  • 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 504 and 508 of the Rehabilitation Act of 1973
  • 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.
Even though technology and online courses must be accessible, what constitutes a reasonable accommodation online is still debated. It is not unusual for a college or university to tell a student that he or she must consider an equivalent traditional course if the online does not work well for that individual. Likewise, schools now suggest online courses as an accommodation when traditional settings prove difficult to access.
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.”
— USDC Alexander v. Choate (1985)
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.
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.
— Bradbard and Peters 2010, p. 2-3
Family Educational Rights and Privacy Act
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.
Legal Implications of the DSM-V Revisions
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. 
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)

Asserting Your Rights

Disclosure Requirements
The 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 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.
— Student Disability Services, University of San Francisco
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.
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).
— National Association of School Psychologists, 2011 (http://www.nasponline.org/)
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.
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.
— Robert Morris University, PA
This policy is roughly the same at most institutions of higher learning. However, the written policy can be waived. For example, RMU often 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.

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.
— GAO, 2009, p. 5
Only as an example, RMU, like most institutions of higher education, reminds students of this legal responsibility in the student handbook and on the RMU Student Services website:
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.
— Robert Morris University, PA
Basic Services of a Disability Specialist
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.
When I first visited Robert Morris University, they constantly asked how they might help me. The small size of the campus means the DS expert knows faculty members personally and can help negotiate accommodations. By comparison, the University of Minnesota, which is huge, struggled to accommodate some students with whom I worked. There are other issues, as well, such as the ability to require faculty to receive training. Faculty contracts often affect what a DS expert can ask of faculty members.

Proactive Planning
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.
  • 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.
Resolving Conflicts
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.

Comments

  1. Having been through this process over the last few years there are some important points that should be added: each university or college can decide what kinds of accommodations they wish to grant. There is no recognized level of accommodations. While extended time and alternative location may be a given (not all schools actually acknowledge the need and make it quite difficult to access as well), there may not be a note taker program, allowance for laptops or recoding (this depends on state law)or allowing certain types of support within the classroom or allowing substitutions for required language or math courses. Professors while they cannot discriminate are not required to go beyond what they do for any other student(very different than k-12). I would recommend that before the student applies to any given post secondary program they talk to the disability office and see what accommodations are available at that particular school.Also another very important point is that there is no lessening of homework or classwork requirements. While accommodations in k-12 can be made to reduce course-load, this does not happen in post secondary education and it is something that needs to be prepared for.

    ReplyDelete
  2. I teach at the college level, and getting proper support for disabled students- especially ASD and processing disorders- can be very tricky and frustrating, even for the professor. At the k-12 level, teachers have access to an IEP, which helps by giving a lot of solid information and guidance for supporting a student. We don't have such luxuries at the college level, and often these older students have been (unfortunately) taught that their disability is an embarrassment or somehow reflects negatively on their character or intelligence. Fellow students reinforce this negative stigma readily, and most colleagues are completely ignorant of disabilities and how to accommodate them- and ignorance also means an unwillingness to accommodate. It's an educational disaster.

    The best advice to give to college-level students with disabilities is to strongly self-advocate, remembering that accommodations are not luxuries that give you advantage, but necessities that allow access to material you are paying a lot of money to gain!

    ReplyDelete
  3. Both of the comments above add to the outline.

    I cannot repeat this enough: research the campus, research the services, research everything you can before committing to a college or university. And I wish more students embraced community colleges and state universities for their undergraduate years.

    1) Community colleges and state "teaching" universities are more affordable -- that matters a lot right now.

    2) You often get better service and more attention from instructors, because research-based "big name" schools are not focused on undergraduate education.

    I attended a large private R1 for undergrad, and a large public R1 in another state for my doctorate. The private school was 100x better for me because they had a residential college approach, so the atmosphere within a cohort was that of a small college.

    I do remind people that the courts have ruled the nature and outcomes of the class experience cannot be substantially different for a disabled student. My wife is an engineer and I've had her explain to students that even a career in engineering requires meeting deadlines and working on paper "in the field" when technology fails (which does happen).

    If you have a failing part (or, say a bridge?) you do not have "extra time" to think about things. And, if this is following one of our wonderful storms, you might not have much power available. Suddenly, you not only have to rush, but you have to use printed tables in large books to do the required math.

    Students don't always realize that a college or university has a responsibility to not only the student but his or her future clients / society as a whole. Do you want an engineer unable to work under pressure while a bridge is creaking? Or while a major sensor at a water treatment plant is failing? Or while the alarms are going off at Three Mile Island?

    So, when I require students use only the allotted test time, that's not to be mean or cruel. I want, I need, to ensure a graduate can work in the "real world" or I've only given the individual a partial education.

    To me, this means colleges and universities need to help students learn to deal with pressure. We need to help students learn how to work with their strengths.

    Smaller campuses don't always have full psychological support systems in place. But, they also tend to know their students and faculty more personally. For me, the smaller campus or residential program is a better approach than the large, impersonal campus.

    Remember: ask lots and lots and lots of questions before you accept admission into a college or university. Choosing on name and reputation alone is not wise.

    ReplyDelete
  4. Best thing ever (except not):

    The DS people are wonderful until someone says "waaaah autism =safety concern" and then the join the discrimination train.

    Seriously, though, good post. I may take a copy with to my next meeting with the discriminators. They seem fuzzy on things.

    ReplyDelete
  5. @N.K. - Do you mean an instructor raised safety issues about someone with autism in the classroom?

    Years ago, instructors didn't want students with any seizure disorders, palsies, or physical supports like oxygen tanks. I am sure some still resist any students that might have complex medical needs in an emergency. I understand an instructor wondering how he or she might help a student with a sudden emergency. Universities seldom offer training for these moments, either. By comparison, I had to pass CPR and emergency training for a K12 credential. We demand much less of professors. (Most universities can't even require attendance at autism awareness programs -- I've spoken to nearly empty rooms at several colleges.)

    If you mean declining admission into a particular class / program, that is different, I believe most would agree. Some safety issues are reasonable: a blind student is probably not going to study to be a heart surgeon. Not a good match. But that's different.

    ReplyDelete
  6. A college instructor of a college PE class does not want a student (a very athletic student-former gymnast & current gymnastics coach) with autism in his class. He was fine with said student until the A-word came up.

    It's sooooo ridiculous.

    ReplyDelete
  7. @N.K.

    Any instructor blocking a student's enrollment for reasons other than the "nature" of the course is likely violating ADA, assuming the student can and will complete the same work as other students.

    The problem is that too many places will offer an "accommodation" (such as "adaptive P.E.") that isn't really an accommodation -- it is merely segregation under the guise of equality.

    ReplyDelete
  8. I think you just gave me the magic words for this situation. THANK YOU.

    ReplyDelete
  9. @N.K. - Thank you.

    I hope more people read this blog post and encourage students and families to become activists within higher education. I don't know what specifically helped, but I'm glad you found something useful in my words.

    ReplyDelete
  10. The whole thing, really.

    But "segregation under the guise of equality" may be the magic words.

    ReplyDelete

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