Autism and University: How Much We Don’t Know

Attending college while autistic is a difficult but interesting experience. My experience is significantly easier than most, because of the specialized program California State University East Bay has, the College Link Program. Because of this, my experience is not indicative of the standard.

Part of the problem of talking about autistic university experiences is that there simply isn’t much research on the subject. The largest funder of autism research, the National Institutes of Health, spent less than one percent of its autism research funding on adults with autism, a historic low, in 2012, the most recent year for which information is available. Society, it would seem, only cares about autism when the person with it is under 18.

A systemic review of articles about college experiences with autism paints a similar picture. Only 20 articles were found that matched the following criteria: First, the article contained individuals with Autism Spectrum Disorders who were attending a degree-granting college or university. Second, the article included a first-hand description of the services, supports, or experiences of one or more individuals. Third, the article was published in English in a peer-reviewed journal. The fact that only 20 studies matched these seemingly easy requirements shows how little this subject seems to be regarded. Furthermore, only two of the articles were experimental in nature; the rest were case studies.

There are a couple studies that are useful to us. A study in the Journal of Autism went into the experience of academically students with autism at the university level to see what were the common factors and themes between them. The study’s authors believe the most important skills for post-secondary students with autism to develop are social skills, organization skills, and self-advocacy skills. This has been consistent with my own experiences. Most of the challenges I’ve faced have been related to my issues in those three areas.

Finally, there is an article from the Interactive Autism Network that discusses many of the challenges faced at the university level. Many of the problems outlined in the article are things I’ve had to overcome, such as reduced support compared to high school, difficulties in navigating the social differences from high school, and having trouble advocating for myself.

In my case, things have gotten better for me in terms of getting the accommodations I need. When I started, it was basically a coin toss as to whether a given professor would be helpful and willing to accommodate my needs or not. Now it’s all but guaranteed that they will work with me in setting things to compensate for my autism. Part of it is that the College Link Program, which helps me advocate, has gained more clout as time gone by, so professors take them more seriously.

Making friends in college has been extremely difficult. Even allowing for my natural difficulties in talking to people, I haven’t had much time to socialize. Almost all of my time when I’m not in class has been spent in the College Link Program lab on work, or in my dorm room, trying to relax after a hard day.

Altogether, there are some severe deficiencies in the academic literature, and in the focus of others towards the community. Autism doesn’t end when you turn 18 and go to college, but that’s what some groups seem to believe. More emphasis needs to be put on learning about, and fulfilling the needs of adults with autism. But for now, that doesn’t seem like it will happen anytime soon.

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