My motivation was personal, since I research students with ASDs and higher education. The more I know about students receiving supports, the better. But, it turns out that as my doctoral study data suggests, not many students with ASDs have sought disability supports.
Most of the leaders of these programs have worked in disability services for many years. For example, the director of the Resource Office on Disabilities at Yale University has worked in disability services for nearly a dozen years. The employees I corresponded within the California State University system (CSU) each had more than ten years of experience in student supports. I sent questions to CalTech, a couple of University of California campuses, the University of Southern California, Carnegie Mellon, and Robert Morris University, where I am employed. I have personal experience with the DS services at CSU Fresno, the University of Minnesota, and Robert Morris. I've also worked with staff and faculty at institutions in Texas, Florida, and Arizona.
The questions I asked were limited to autism spectrum disorders. Roughly, the questions were:
1) What documentation is required to apply for and/or receive supports?
2) Do you have any students with ASD diagnoses currently receiving supports, or have you had such students in the past?
3) What services are typically provided to students with ASDs?
4) Is there any training for faculty and staff related to students with ASDs?
The first question was consistently answered with an important qualifier for parents and student. Not one university or college accepted "educational diagnoses" offered in some states by school psychologists or other school employees. Self-diagnoses are never accepted when seeking supports. Every institution requires a recent (which varied from 18 months to four years) assessment by a clinical psychologist, psychiatrist, neurologist, or medical doctor. If the assessment was by any licensed health care professional, it was considered valid. A CSU support expert explained that the university where he works accepts any clinician's diagnoses because that is the easiest, safest, legal approach to compliance with ADA and Section 504/508.
In all but two cases, only a letter from a licensed clinician was required. The other two did not elaborate. These were state universities in two different states and might have other paperwork requirements, but I do not know and cannot state with any certainty what they require.
The second question was more surprising. Yale's director of DS indicated only a few students in the last decade had requested supports related to an ASD. Several university DS experts replied that they had never been asked to develop a support plan for a student with an ASD. That was surprising to me, but I discovered only one university support person, at a Midwest state university, could recall working with more than four students diagnosed with ASDs.
From CalTech to Yale, the DS experts said they welcomed students with any diagnosed special needs, but that students simply don't seem to seek out supports. Maybe this is particularly true of ASDs?
It does turn out that UCLA has (or had?) an active Autistic Self-Advocacy Network (ASAN) chapter. This group has hosted events on campus and seeks to improve awareness of ASDs. Autistic students run the organization, which is not associated with the DS offices at UCLA.
I received only vague answers to the third question, which is to be expected. Every student with special needs is different and there are no "typical" services for students with ASDs.
Finally, most campuses did not provide training to faculty. Some encouraged staff and faculty to attend local conferences or events. Until there are more students with ASDs in higher education seeking institutional supports, the DS offices must focus on other special needs.
Carnegie Mellon referred me to AHEADD and the Cal State campuses in the S.F. Bay Area referred me to CLE for additional information on supports for students with ASDs.
AHEADD's website reads:
AHEADD (Achieving in Higher Education with Autism/Developmental Disabilities) is a private, community organization that provides support for students in higher education with:CLE, with offices nationally, provides the following information:
Originally developed in cooperation with Equal Opportunity Services of Carnegie Mellon University, AHEADD is specifically designed to address students' inherent social, communication, and organizational issues, and helps students develop individualized strategies to manage their college careers independently.
- Learning Disabilities
- High-Functioning Autism (HFA)
- Asperger's Syndrome (AS)
- Non-Verbal Learning Disorder (NVLD)
- Attention Deficit Disorder (ADD)
Finding the right college program for students with autism spectrum disorders, Asperger's, nonverbal learning disorder, ADD/ADHD and other learning disabilities is vital for a college student's transition into independent adulthood. The right program should provide support for each student's unique needs and goals.
With the help of College Living Experience (CLE), young adults with learning disabilities are experiencing independence as college students. College Living Experience helps special needs students attend universities, community colleges, and technical and vocational schools near one of the five CLE locations across the country.
I've met with CLE representatives and must admit that the costs concern me. The CLE centers are in Austin, Costa Mesa, Ft. Lauderdale, Denver, Monterey, and Washington, D.C. The locations serve students at multiple colleges and universities. For example, the Costa Mesa center supports students at several community colleges, CSU Long Beach, CSU Fullerton, and UC Irvine.
Both AHEADD and CLE have a limited number of service centers. These centers do work with colleges and universities to provide supports for students with ASDs. I am meeting with AHEADD representatives later this week to learn more about their programs. I have noticed there are AHEADD programs at California State University, Bakersfield. I did not expect to find an autism support center at CSUB, but that's a great thing to know as a Central Valley native.
I'll write about AHEADD after I meet with their support experts this week. This is strictly my initial impression, but it seems that private organizations are working more directly with autistic students.
I'm unable to explain why universities might not be encountering more students seeking supports. Maybe parents and students will offer insights in coming months.