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Higher Education and Supports for Autistic Students

Based on comments several months ago to this blog, I spent a few "extra" hours this summer contacting college and university offices that serve students with special needs. The names of these offices vary, from Disability Services to Disabled Student Support, but regardless of what an institutions calls "Disability Services" it was easy to locate and contact the directors, managers, or coordinators of these programs. A few heads of DS also carry the title "professor" and teach within academic departments in addition to their other duties.

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:
  • Learning Disabilities
  • High-Functioning Autism (HFA)
  • Asperger's Syndrome (AS)
  • Non-Verbal Learning Disorder (NVLD)
  • Attention Deficit Disorder (ADD)
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.
http://www.aheadd.org/about.html.
CLE, with offices nationally, provides the following information:
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.
http://www.experiencecle.com/home.aspx

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.

Comments

  1. I think the answer is really simple. Not many students with childhood diagnosed ASD's attend college, period. The only one's I'm personally aware of that attended college were diagnosed as pubescents, not as grade school children.

    I believe the reason for this late "diagnosis", is exactly as Dr. Frances, the former chair of the DSM-IV Task Force and chair of Psychiatry at Duke University explains.

    "The most likely cause of the autism epidemic is that autism has become fashionable – a popular fad diagnosis. Once rare and unmistakable, the term is now used loosely to describe people who do not really satisfy the narrow criteria intended for it by DSM IV. Autism now casts a wide net, catching much milder problems that previously went undiagnosed altogether or were given other labels. Autism is no longer seen as an extremely disabling condition, and many creative and normally eccentric people have discovered their inner autistic self.

    "This dramatic swing from under- to overdiagnosis has been fueled by widespread publicity, Internet support and advocacy groups, and the fact that expensive school services are provided only for those who have received the diagnosis. The Korean study, for example, was financed by an autism advocacy group, which could barely contain its enthusiasm at the high rates that were reported."

    http://www.project-syndicate.org/commentary/frances1/English

    Why would one find it surprising that not many students would seek out the services of the university? ASD college students are extremely rare. One thing I found noteworthy which you didn't point out, is that it wasn't a problem of the schools not accepting school psychologist diagnosis, it was that the schools never even saw an potential ASD student. A student with a history of secondary school diagnosis wouldn't have known what the criteria was to receive services before contacting the disability services office. The fact the schools don't report even anecdotal evidence that students sought out the services but were told to get a "fresh" diagnosis supports my argument, namely that few people with ASD's attend colleges, period.

    "students simply don't seem to seek out supports. " Because they don't exist in enough numbers to be notable.

    "In all but two cases, only a letter from a licensed clinician was required." Everyone with a child with an ASD knows that is a very simple step because the Pediatrician has worked for years with your child's disorder. The fact there is such a low barrier to prove an ASD makes it more damning that the public has been mislead by organizations like ASAN, which seems to have no problem attracting the college age self diagnosed and then pawning them off as real autistic people.

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  2. I must admit that I have met fewer than a half-dozen current higher-ed students with clinical diagnoses. I have met several adults with ASDs and some college experience. These adults were generally diagnosed as "mentally retarded" or "traumatic brain injury" during the 1960s or 70s, but even that number is fewer than a dozen and represents at least three different generations.

    That does contradict any claims that there are many students with ASDs prepared for the college or university setting.

    I cannot support self-diagnosis unless it leads to someone obtaining a clinical assessment. By the official criteria, your daily life has to be "adversely affected" without proper supports. If a student today states he or she was "unaware" of an issue and only minimally affected, I don't know that a college or university would determine specific supports are necessary because that is done on a case-by-case basis.

    Many of the self-diagnosed students I have met do not, in the end, obtain a formal diagnosis for an ASD. I do not count or calculate statistics, but I'd estimate that fewer than a third end up with an official ASD diagnosis. The overwhelming majority return with ADD/ADHD or social anxiety diagnoses. I'm not a clinician and both my research and my support efforts can only include students with formal diagnoses. (You can't research "autism" and include the self-diagnosed.)

    If a parent or student believes there is a serious impairment, an assessment of some manner and developing a support plan is essential. Most universities will work with students, but I also caution students that a university is not like K12 -- there is no formal IEP process and a professor has the right to refuse any accommodation that he or she deems unfair to other students.

    It is probably accurate that there simply are not large numbers of individuals diagnosed as children who will enter higher education.

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  3. "a professor has the right to refuse any accommodation that he or she deems unfair to other students."

    I'm not doubting you, its been more than a decade since I was in a university. How can a professor not accommodate and still be in compliance of ADA?

    I've always had a problem with the excuse unfair to "other students" when asking for accommodations. It seems particularly with mental disorders only. If I were blind, would it be unfair to give me tests in braille? If I am autistic, would it be unfair to give me extra time to process?

    I'm sure you're correct because you have been closer to the academe in recent years than I have but how do they square this thinking with the ADA from your experience?

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  4. I'm the author of "Developing College Skills in Students with Autism & Aspergers Syndrome" and i think whats happening in the field now Is that colleges/universities are scrambling to figure out how best to meet the needs of students with ASD. With the rate of Autism being 1 in 100, these students will be descending on universities at alarming rates from now on. Many do have the capability to attend, but we need to do a better job of preparing them before they leave high school. As a society its in our best interest to do so. In this way they can be employed and become tax paying citizens who contribute and feel fulfilled. Sarita Freedman, PhD

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  5. The test case involved a nursing student. There simply are some majors in which a disability is considered a disqualification. Many are in the health care, but I've also had to explain to a pre-vet student that she would not be able to pass the required practicum.

    It's not unreasonable when you consider the nature of some forms of employment. The university degree, which ostensibly is preparing you for those professional exams or placements, has to reflect the norms of the disciplines.

    I told the pre-vet student to consider forensic science and I believe she did study equine diseases and morbidity.

    The reality is, not everyone can do everything. ADA has limits, especially when careers involve public safety or something similar. A professor has a right to then say, "I will not / cannot modify the practicum, lab, or exam experiences."

    Student and parents have complained to me, but the reasoning seems logical to me. Again, most are health/science fields with such limitations, but I have run into some majors in which timed tests and practicums proved challenging for students with special needs. You can't take a class on "day trading" and not expect a lab to be in realtime. Yes, I had a business student ask why a class on stocks and bonds had labs using realtime data. I suggested taking finance or other less time-based courses within business.

    People don't always want to admit limits, even in education, can be reasonable.

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  6. Dr. Freedman -

    Only 11% of higher education students indicated a disability in the last GAO/DoEd survey period. This might reflect a sense they do not want or need supports, which is something I would expect of young adults. Though I was physically disabled as an undergrad, I never met with DS and never contacted any university office regarding potential limitations. It never occurred to me to do so.

    I doubt we'll see a spike among university students seeking supports, especially as budget cuts have hit many of the institutions with which I've worked. I've watched as large state universities cut their support specialists and increase their case loads. As a result, many of the students requiring supports find the systems too frustrating to navigate.

    This also explains why private companies and non-profits are trying to fill the gaps left by cuts to services. Budgets are not improving any time soon -- I expect far more cuts, including changes to mandates to reduce university liabilities.

    I probably would have dropped out of graduate school (I did several times, admittedly) and not finished without the support of friends, family, and private support experts.

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  7. Following various leads, I have discovered several "autism support programs" within particular universities and colleges. I will list the schools in a separate comment. For the most part these programs involve a significant amount of social skills training, peer mentoring, and academic supports of various types. Almost all of them are affiliated with a particular academic area--most often Special Ed but also Psychology, Ed Psych, Occupational Therapy. Several have research programs in the field of autism. Most (but not all) require a fee in additional to the college's tuition, typically in the $2000-$4000 per semester range.

    ReplyDelete

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