To Disclose or Not to Disclose: College Acceptances and Youth with Autism Spectrum Disorder

Engineering instructor with Aspergers demonstrating project bubble diagram to students, one man with spinal cord injury
Engineering instructor with Aspergers demonstrating project bubble diagram to students, one man with spinal cord injury

Meet Sam, who is highly gifted in mathematics and recently joined a large public university with dreams of majoring in Engineering. Yet despite his brilliance and success, Sam was forced to drop engineering because of the demands made by the lab instructors: switching lab partners every week, for example. This created such anxiety for Sam, as he lacked the social skills required to meet new students every time he came to class, that he dropped out of engineering. Sam's experience is not unique, at least for college students with autism spectrum disorder (ASD).

To disclose or not to disclose? This is the dilemma faced by thousands of students with autism who have just been accepted to college.

Because ASD is "invisible," it is not usually apparent to college professors or instructors. It is difficult for them to reconcile how high functioning individuals with autism can be so advanced intellectually while lacking the practical and social skills necessary to succeed in college. This places students with ASD in difficult situations, and places their long term success in potential jeopardy.

Does Sam have the courage to disclose his ASD and risk the consequences? Or, should he not disclose and risk being put in a classroom environment not suited to his needs and in the academic care of professors who don't understand his weaknesses--as well as his obvious strengths?

For the past 30 years, I have taught at a large university campus, where I have encountered a number of students on the autism spectrum. While research shows the percentage of these students currently attending U.S. colleges and universities may only be two percent, there will be an increasing number of students with autism spectrum disorder attending college, in part because of the recognition that more than 50% of them have average intellectual disability, and some have superior cognitive ability and outstanding talents in certain skill areas (e.g., math, music, science).

My research team has utilized the campus community as a kind of living laboratory, where we have explored campus members' awareness of autism, and interviewed both young men and women with ASD about their personal experiences, and professors about what it's like - or might be like - having students on the spectrum in college classes. With this as context, I offer advice about when and where students might disclose as well as some advice for professors.

The first time a student will face the decision about whether to disclose is while writing his or her college application essay. The purpose of the college essay is often three-fold: 1) To assess the applicant's writing skills; 2) To assess the applicant's creativity or depth of knowledge; and 3) To learn something about the applicant.

The second juncture for disclosing occurs once enrolled in college. At that point, disclosing the autism spectrum disorder to the campus disabilities office is the only way to find out what resources will be available. Note that if the accepted student has a diagnosis, the university is mandated by law, specifically by Section 504 of the Rehabilitation Act and the Americans with Disabilities Act, to provide academic and physical accommodations, should they be needed.

However, I would argue that a third disclosure point -- letting professors or instructors know that the student has autism spectrum disorder -- is an often overlooked but crucial one. In Sam's case, for example, letting his professors know, in addition to the disabilities office, could have been pivotal to his success.

For all the 'Sams' in our higher education institutions, as well as those to come, I offer the following advice to campus communities:

To students: Come prepared. Develop a list of things that help you perform better (knowing about test requirements ahead of time; being given extra readings instead of oral reports; tolerance when you ask questions or if you get up suddenly and walk out of class) and those that don't (requiring new lab partners every week; interacting with others in small groups; being called on unexpectedly.) Your professors will appreciate these suggestions.

To professors: Although you are required to provide accommodations, you can do that well only if informed about ASD. Professors in one of the Science, Technology, Engineering, Mathematics (STEM) fields should be particularly attuned to this issue. Indeed, one study utilizing a nationally representative sample reported 34.7 percent of young men and women with ASD attended college during the first six years after high school, with a higher proportion majoring in STEM fields, when compared across disability categories.

We were encouraged to learn from our research, involving interviews with professors and both undergraduate and graduate students, that some progress is being made. In one case, a professor in a STEM field chose to work with a graduate student who disclosed that he was "on the spectrum." This student was not shy about talking - in fact, he spoke loudly, focused intensely on one topic, and was not a good listener - hallmarks of the social deficits in autism. By teaching him when not to talk, and to listen to what his peers had to say, the professor found that the student was a real asset in the lab, and all benefited from this learning experience and from the student's expertise.

Despite the increasing enrollment of students with ASD in college, the importance of an informed and supportive faculty, and the fact that ASD doesn't appear to be going away any time soon, there is virtually no data on the effectiveness of educating faculty about this spectrum of disorders.

There are some guidelines for enhancing college success available from the websites of national organizations, such as Autism Speaks or the Organization for Autism Research. There are also guides on the market (e.g., The Parent's Guide to College for Students on the Autism Spectrum) and several U.S. universities and private companies have well-developed websites for this purpose.

Researchers in the U.K. have a jump on this topic. Fiona Knott and colleagues at the University of Reading have studied life at the university for students with Asperger syndrome, for the purposes of developing additional supports for these students. At Warwick University, there is a major project called Finished at School that documented the launching of young people with autism into college and provided an empirical evaluation of the effort .

To disclose or not to disclose is no longer the question. Rather, it is how we can best educate college and university faculty about making micro changes in their course procedures and activities that have macro effects on their students, like Sam, with autism spectrum disorder

Jan Blacher is a Distinguished Professor and UC Presidential Chair at the University of California, Riverside. She directs the SEARCH Family Autism Resource Center and is the principal investigator of a study to develop Autism 101, a faculty guide for understanding and supporting college students on the spectrum.