A Guardian article about autistics going to university reminded me how much we miss when we call autism a “social” disability – something that affects primarily our ability to interact.
Is autism primarily a social disability? NO! Autism is a bit more complex than that. No, a lot more complex.
I had problems in university. Some of them were social. For instance, my first week of school, I didn’t eat anything because I was too overwhelmed to ask where the cafeteria was – eventually my hunger got the best of me and I stalked a group of students at around dinner time. But going a week without food isn’t a good thing. And, yes, if I interacted socially like most people, I probably would have asked someone for directions.
Some classes focused on group work. I did pretty poor in those. I still hate group work, and avoid it at all cost. Fortunately, most of my teachers accepted this and let me do individual work. But I did pretty poor when they didn’t.
But, there is a lot more to autism than social stuff. I probably would have graduated from my first attempt at university if I had some non-social help. I didn’t need help with the subject matter, but I did need help organizing things and figuring out how to schedule my time. The university may be able to help students with that now, I don’t know. But it’s deeper than that.
In fact, the social part of university was the part I enjoyed the most – I had more friends during that time of my life than during any other time of my life! I could find people interested in what I was interested in. I loved that part of it – I had little trouble making friends (after the first week).
I needed help with daily life. Getting up in the morning, getting dressed, doing laundry, eating, organizing my room, paying my bills, etc. Of course most universities expect you to do that yourself. Maybe that’s fine, but if it is, then this help needs to be available elsewhere.
One of the biggest things that caused me problems was the avalanche effect. I could cope with a few flakes of snow. Or even a snowball or two. But, if you get enough snow at once, it’s deadly. If I got behind a little in my daily living areas, homework, self-care, etc, it would tend to push other things behind. Pretty soon, everything was behind. After a bit of this, everything was behind so much that there was no hope of catching up. I needed a chance to rest and recover sometimes. I rarely got it.
As an example, let’s say I had a hard day for any number of reasons. I end up going to bed exhausted, but after 8 hours or so of sleep, I might not be fully recovered. So it’s impossible for me to get up and get breakfast, and maybe I even can’t make it to that first class. Of course there is homework in that class, and while I have plenty of friends, I don’t have any in that class to find out what homework was assigned. Instructors aren’t very helpful when you say, “I slept through your class…again…” so you’re on your own. So now, I have something that is stressing me out (my homework), I probably have late or no marks for the homework I was supposed to hand in, and I still haven’t eaten any food or got to any class. The stress might keep me from my next class too, which compounds the problem. Then I find I don’t have any clean underwear to wear, since I forgot to do laundry yesterday when I was stressed out. So I have to go do that – and that’s two more hours out of my day. So I end up collapsing in front of the TV or computer game or internet. And now it just looks like I’m a lazy ass, so I’m not going to get any sympathy (or, more helpfully, HELP!) now!
Another part of the problem is that most 18 year olds don’t know what help they need, and most universities don’t know either. Sure, they have ideas, but they generally lack the flexibility and imagination – and perhaps even money, people, and ability – to notice things like, “Oh, it’s probably important that we find a way to make sure Joel can get food when he’s overloaded and can’t do the dining hall. He’ll have more success in school with that.” Or realizing that there is alternatives to group work that meet students where they are instead of where their peers are. Or eliminating some of the barriers students have to getting a degree inherent in the program.
For my program, I needed a foreign language. After I took Spanish I for the third time (and failed it), I gave up on that. And I gave up on the group-work senior project class, not because of lack of ability to do the work but because of the incredibly strange way the professor wanted us to work together. Then there was certain progressions that were expected, but maybe I missed or had trouble with one part of it one semester – and the next semester, the same course wasn’t offered, but I also couldn’t progress with the rest of my class.
If we can’t even get the flexibility we need with the aspects of the program that are 100% under the control of the university – course progressions, general education requirements, and course structure – there’s little hope for us when it comes to daily living and coping with overload.
It doesn’t help when you yourself don’t know what you need to succeed yet.
Here’s what we need (and I’m sure there are others);
- Daily Living Support – we need to meet our own needs for food, shelter, self-care, home organization, financial, and administrative stuff. There should be a way for students who could excel in their field to still excel in their field, even if they have problems with these areas
- Structured Flexibility – I needed deadlines to get work done by. But at the same time, I needed exceptions and flexible schedules. And I needed a lot more than most students.
- Creativity – how can I demonstrate my growth? How can I learn my field? There’s not just one way!
- Crash Time and Space – I need a place to escape, rest, and relax. If I don’t get this, then everything else crumbles around me. A noisy residence hall is not an escape – it’s tremendous work.
- Academic Support – this was the least important thing for me. These are the accommodations universities know how to accommodate the best (which is still often pretty awful). This is things like note takers, testing environmental accommodations, tutors, etc. I don’t know much about this because it’s not something I needed.
I’m sure there’s others, and I’d love to hear other people’s thoughts.