Last fall, as she began her first semester in college, our oldest daughter A. began having seizures. Scary seizures–people around her freaking out seizures–multiple visits to the e.r. seizures. On one occasion, the members of her quidditch team (for those of you who don’t know, quidditch is now a Muggle sport–and hilarious to watch) carried her to the e.r. and waited there with their broomsticks for me to show up. We had visits to neurologists, tried various seizure medications, but nothing helped. Significantly, the seizures stopped over winter break when she was home, but they started up again when she went back to college.
College was stressful, no doubt about it. Fluorescent lights everywhere, way too much group work (a social nightmare for most people, not only autistics–I speak as a retired professor who discovered long ago that group work is not all it’s cracked up to be), unpredictable social events, class assignments and fire drills. Soon into the second semester, we had to get her out of the dormitory. Even though she had a single room, a huge building full of loud people was just too much. So we got her an apartment close to campus, and a puppy to keep her company.
But the seizures continued and worsened. Soon they were coming several times a day. So the neurologist ordered four days in the hospital with constant monitoring and frequent efforts to induce seizures by depriving her of sleep, flashing lights in her eyes, etc.
And here’s what we found out. The seizures were real, but they were not, as we had feared, epilepsy. (The recent study showing how short autistic life spans are had emphasized epilepsy as a cause of early death, so the prospect of epilepsy was particularly frightening.) Instead they were “psychogenic non-epileptic seizures,” or PNES. And the most probable cause was the stress of going to college. It built up and built up until A.’s brain just couldn’t take it anymore and she lost consciousness, fell down, shook, drooled, etc.
We have learned a lot from this experience, but one of the main things I have been thinking about is all the completely unnecessary pressure university life imposes on autistic students. Of course the work required to get a college degree is stressful in itself, so the student has to find ways to deal with it. But the typical physical and intellectual environment within higher education creates additional, gratuitous stressors. (Having spent 30 years as a professor, I know about this stuff.)
In the United States, for example, first year students are usually required to live in dormitories, because that’s one way universities make more money off of them. But dorms are hideous experiences for many if not most autistic students. At public universities they tend to be huge, echoing, somewhat dirty places, full of unpredictable noises, smells, and social pressures. So, if someone requests an accommodation allowing them to live elsewhere, why is this not automatically granted? Why did we have to threaten a lawsuit in order to get A. out of there?
Why does EVERY SINGLE CORNER of the university buildings have to be lit with fluorescent lights? Couldn’t there be a few little nooks and crannies that rely on natural light, at least in the daytime? It would probably save universities money if they left a few places slightly darker than usual, but the lights are so glaring everywhere that they hurt even my eyes.
An even more troubling trend in recent years is the introduction of fire alarm systems that include strobe lights and ear-drum-pounding noises. These are intended to force people out of buildings so that they won’t get hurt in fires, but no thought at all seems to have been given to how these alarms will affect autistic (let alone epileptic) students.
And then there are the mental stressors. For every one of my thirty years teaching at university, I had a syllabus at the beginning of the semester. Sometimes it was incomplete, because I wasn’t sure whether certain technologies or books would be available. But it always listed every single assignment, with the date on which it was due. It always listed the time and place of every exam. But as A. has gone through community college and now university over the last few years, I have discovered that apparently I was the exception to the rule. Sadly, her teachers often have no syllabus at all. Or if they do have one, they suddenly introduce new assignments or change the dates for exams at will. This is incredibly difficult for someone who needs routine and predictability, as well as being contrary to accepted best practice for teaching.
I could list more problems, but you get my drift. The bottom line is this: if we want more autistic kids to be able to go on to college, we need to educate our colleges and universities about the generally inexpensive and easy changes that will allow autistics to succeed there–to finish their coursework and degree requirements without developing seizures or other physical manifestations of stress, or having to drop out because they just can’t take it any more.