Autism and Higher Education: Accommodations and Communities of Care

On Oct. 19, 2016, I attended a webinar entitled “Students on the Autism Spectrum: Legal and Practical Considerations for Education Administrators.” The presenters were Scott Schneider (Chair of the Higher Education Practice Group at Fisher Phillips, a law firm with offices throughout the U.S.) and Josh B. Zugish, Senior Associate Legal Counsel with the Colorado State University System. Both presenters are attorneys, specializing in laws that affect higher education. So their perspective is largely about legal compliance, the steps necessary for universities to remain in compliance with federal law. The laws in question for this webinar were the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act, the two primary laws that provide protection for disabled people in a variety of settings.* I expected  them to offer ways to get by with minimum compliance. This was, after all, aimed at university administrators, and administrator folks are always looking for ways to shore up budgets. Instead, however, they offered a much broader framework for a community of care, a way to interpret the absolute minimum–known in legal jargon as “reasonable accommodations”–rather generously, and offered examples of several university campuses that are putting these care communities into action.

I attended this webinar because it lies at a nexus of my experiences: I taught at a public university for 10 years, and spent 3 of those as a part-time administrator. And now I’m finishing my training as a Special Education Advocate, learning the laws that govern K-12 Special Education and disability rights. Also, I’ve got 2 **Autistic kids who likely have college in their future, and just getting them there will require fights for accommodations. It behooves me to know what their rights are. So, here I offer a summary of the webinar, and some additional thoughts about the needs of Autistic students in Higher Education. There’s lots to praise here, and lots to critique, and even more to discuss in later blogs.

First, a summary of the webinar:

Zugish began with an acknowledgment that Autism diagnosis rates are on the rise. (Accepting this data uncritically is already a problem, but I won’t belabor the point here. If you want to read more context about the numbers, read this, and this, and this, and even this.) He used the latest CDC statistics to make the point that if we have such an explosion is diagnosis rates in kids, we can expect that a much higher number of Autistic kids will eventually make their way to higher education, and higher ed is not yet prepared to offer the “reasonable accommodations” that Autistic students in particular might need. In order to break down what “reasonable accommodations” might mean, Zugish (who, it is important to note, made clear that he’s not an Autism expert) drew from the diagnostic criteria of the DSM-V (The fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, which is essentially the bible of diagnostic psychiatry). Criteria for diagnosis under the DSM emphasizes deficits; for an Autism Spectrum Disorder Diagnosis, a diagnostician is looking for a certain combination of deficits in communication, social-emotional reciprocity, and developing and maintaining relationships. This is not an exact science (which is a mild way of saying that modern psychiatry is deeply flawed and the development of the most recent DSM volumes has done more harm than good, but I digress). Even knowing about the “deficits” that can add up to an ASD diagnosis doesn’t help educators know what to expect. As Zugish noted, support needs will differ from person to person. And because this is not a visible disability, it will not always be immediately obvious to educators that a student needs accommodations.

So, pulling from the DSM’s explanations of Autism, Zugish broke down individual areas where Autistic students might need support and then suggested methods of support. Under communication needs, for example, he noted that according to DSM criteria, ALL Autistic students “have challenges with receptive or expressive language.” (I’ll let my Autistic friends address the “all” bit.) Here’s a list of his suggestions for accommodations, and remember, he’s coming from the legal standpoint of the minimal responsibility a university has to be in compliance with disability law; these are “reasonable accommodations,” not a pie-in-the-sky wish list:

  • “providing the instructor’s lecture notes or a note taker to focus on important information
  • providing study guide for tests
  • allowing a longer verbal response time
  • allowing important exchanges of information to be in written form
  • encourage instructors to be clear, concise, concrete and logical when communicating (don’t assume what students truly understand.”

He also discussed the social challenges Autistic students may be dealing with and suggests, among other things within classroom environments: allowing breaks as needed, allowing “social buffers” (such as letting the student have a laptop open as a buffer between her body and the class); respecting the student’s chosen level of eye contact; being purposeful about how groups are constructed if group work is required, aiming for maximum level of comfort for the Autistic student; and making sure that all classroom rules regarding discussion, classroom interaction, and logistics are written (and not left to what is expected to be implicit understanding). In short, he advocates following the lead of Autistic students regarding their needs in terms of social interaction, and not shaming them for non-normative behavior. This is good.

Zugish also discussed how to help Autistic students deal with sensory overwhelm in classroom environments. He argues in favor of allowing students to wear hats, sunglasses, and tinted lenses in class; these simple items can make a world of difference for students who need sensory aids. He also suggests providing alternative assignments and testing instruments upon student request, and helping students secure preferred seating in class. Again, his suggestions are mostly in line with letting Autistic students find what’s right for them.

He also addressed how Autistic students cope with anxiety, and how instructors can help. He pointed out that in stressful situations, Autistic bodies move in non-normative ways. Autistic students may rock in their chairs, or flap their hands, or may need to pace. One of his solutions is to discreetly ask the student if a break is necessary. (Here I found him walking a fine line between accommodations and ableism. It’s worth pointing out that Autistic bodies express lots of emotions, not just stress. Happy flapping is a thing. Happy rocking is a thing. Movement doesn’t necessarily indicate distress. This is one of many points that would have benefitted from the input of #ActuallyAutistic people.)  He did, however, also point out that instructors have the opportunity here to model how to react to the rest of the class: don’t call out the Autistic student; don’t discourage or interrupt the stimming student. And have a pre-arranged signal so that if the student needs to leave quickly, he can.

Zugish also suggested a variety of accommodations for motor skill challenges, such as providing a note taker in class, allowing work to be done on a computer (rather than depending on handwriting), and providing extra time for assignments and tests. These are good. But then he offered a learning profile for Autistic students: Autistic students, he said, tend to have excellent memories (both rote and long-term) and often excel in unconventional ways. Now, I know there are plenty of Autistic people with astounding memory skills, but we need to get past the idea that all autistics are savants and the corollary that all Autistics who get to college level work are geniuses. Skill sets vary widely. And educators need to understand that skill sets can vary by the day, and even by the hour.  If you reading this to learn how to better reach / accommodate Autistic students, please don’t assume savant skills. Take the time to get to know the student, rather than relying on a profile. And be ready to accommodate your Autistic students in whatever way they need accommodation that day, rather than assuming that what they could do today, they can do tomorrow.

Readers may be interested to know that after I attended this class, I posted a query on Facebook, asking actually Autistic people to weigh in on what accommodations have been / would have been most helpful in college / university. Here’s what they said:

  • extra time on tests
  • note takers
  • permission from instructors to record lectures for later review
  • attendance accommodations
  • permission to always use a laptop to take notes
  • reduction of distractions during testing
  • having class materials available in both written and auditory form
  • flexible, alternative assignments
  • breaks as needed

There’s clearly an intersection between what Autistic people need and the “reasonable accommodations” Zugish is suggesting. But as I listened to this webinar, I couldn’t help thinking about my own experience as a professor. I am hard pressed to come up with colleagues who are prepared to offer these accommodations. Implementing these accommodations in college programs requires a major shift in higher education. Ph.D. programs do not teach future professors about accommodations, and professors are usually coached by their universities and colleges to only offer the accommodations required of them by the campus student disability support office.

Furthermore, what Zugish was really describing was more than classroom accommodations. In his opinion, universities have a duty to think about the whole person, recognizing that Autistic students may need support in many areas of life, not just in the classroom. He’s proposing a community of care, a university-wide social support net.

Communities of care?

Zugish based his presentation on work already happening at three particular universities: Rutgers, Colorado State University, and University of Arkansas. These universities are thinking globally, and have involved not just faculty, but also counseling staff, housing staff, campus law enforcement, campus social life groups, etc.; the idea is to get the entire campus thinking about how best to support students. Rutgers offers peer mentors, life skills workshops, extra academic and personal advising, employment planning, and a streamlined process for academic services and psychotherapy services. At the University of Arkansas, students receive an additional 15-20 hours per week of staff contact time with academic coaches, mentors, and even the program director. As you can imagine, this requires staff. And increases in staff requires funds. So where is this money coming from?

The money is coming from the Autistic students. All of these programs add the fees to the Autistic student’s bill; Zugish reports that these fees average $3,000-$6,000 per semester (!!!). The universities argue that these extra fees are taken into consideration when financial aid is determined. I haven’t seen numbers from any of these programs to be able to address what actually happens. But here’s what I took away: universities will be glad to accommodate you as required by law, but you will pay for it. Does anyone else see a legal contradiction here? If we can argue that these accommodations are “Reasonable accommodations,” then universities should be required to provide them under the ADA and the 504 Act. “Required to provide” does not mean “pass the fees to the disabled population.” So while I’m heartened by the efforts these universities are taking, and I’m eager to get post-secondary instructors thinking about accommodations, I’m also stuck by the paradox here: if you are disabled and you need support, you will have to pay for it yourself, even though it’s required by law. This is not equity.

 

Do you work in one of the programs profiled in Zugish’s presentation? Are you a student in one of these programs? If so, I’d like to hear from you about how the program works.

 

 

 

*I am not an attorney. Nothing I say on this page should be construed either as an expert opinion or as legal advice. 

**The presentation used person first language. I use identity first language. On purpose. If you want to argue about it, go read this first.

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