The Autistic Self Advocacy Network will be holding a Summer Institute August 13-17. We are accepting applications to fill up to 20 slots for participation. This exciting opportunity is specifically for Autistic college students, whether you are in a certificate program, an undergraduate, graduate or post-graduate. If you have at least one year left in college, you can apply by filling out our application and essay questions and submitting them with your resume to email@example.com.
The Summer Institute is part of our Autism Campus Inclusion project to increase visibility of Autistic students on college campuses. The week long training is to increase participants ability to create systems change, community and inclusive campuses. With training by top leaders in community activism, the Disability Rights’ Movement, and the Neurodiversity, participants will undoubtedly come away with knowledge and understanding on the way to work with existing structures to advance the principles that are meaningful to our community.
Applications are due by March 30, 2012 with participants being notified in May. If you have any accommodation needs for the application process, please direct your questions to firstname.lastname@example.org. Other questions, to be included in our email distribution on this and other issues, and to get a copy of our print flyer for the ACI Summer Institute can be provided by sending an email as well.
by Meg Evans
Going away to college can be overwhelming at first. Being in a different place, away from family, and having so much to do… it’s a lot to handle. Even after it looks like everything has settled into a manageable routine, that may not mean the adjustment period is over.
When I started college, I thought that it was going pretty well after the first month or two. My roommate was friendly, I knew how to get to my classes and meals, and the coursework didn’t seem too hard. There was some annoying stuff, like the ugly flickering fluorescent light tubes in the dorm and the noisy people down the hall who always wanted to party all night; but I thought I could deal with that, too.
One day in November, while I was standing in line in the crowded cafeteria, I just burst out crying for what seemed like no reason at all. I hadn’t been feeling sad about anything in particular, and I wasn’t worrying about my grades or for any other reason that I could identify. As far as I could tell, my life had been going along just fine. Nothing like this had ever happened to me before. What was wrong with me? Had I suddenly developed some mysterious new illness for which I needed treatment?
I was advised to go talk with one of the school’s counselors, which I did; but the counselor didn’t seem to have much of an explanation for what had happened, either. After a while, I decided that it was just something I was never going to understand. I didn’t give it any more thought until many years later.
Then something similar happened after my husband and I bought our first home. Getting used to a new place and having to manage the money carefully was a challenge, but I thought it was all under control. I decorated the house for our first Christmas there. One afternoon, when we were getting ready to go out, I got my coat and started to put on my scarf. All of a sudden I literally didn’t know what to do with this fuzzy soft thing I was holding. I couldn’t remember how to wrap the scarf around my neck. I ended up walking outside just holding the scarf, wondering what the heck had gone wrong with my brain.
Eventually I realized it’s not all that unusual for people to have delayed reactions to stressful events. The human brain is very complex, and there’s a lot going on beneath the level of awareness. When we are putting most of our conscious energy into coping with a new situation — whether it’s going away to college or something else — we may not be aware of just how much subconscious effort goes into it as well. Every now and again that subconscious processing takes up the equivalent of too many CPU cycles and causes weird glitches to happen, just like on a computer. It doesn’t mean there is necessarily a major problem (although anyone who is having suicidal thoughts or other serious issues certainly should seek help), nor does it mean we can’t deal with change. It just means we’re human.
by Sarah Pripas
We live in a paradox. Talk of autism is everywhere, yet the voices of actual autistic people are frequently marginalized or absent altogether. While one would hope that academia would be more inclusive, this is not necessarily the case. Too often the conversation about how best to help and accommodate autistic people in higher education is occurring with minimal to no input from autistic people. Moreover, commentaries on autistic people in higher ed written by non-autistic people are too often replete with problematic assumptions.
Take two examples from very different formats: David Yoder’s 2008 Inside Higher Ed blog entry, “My Semester with an Asperger’s Syndrome Student,” and Ann Jurecic’s academic article, “Neurodiversity” (College English Vol. 69 No. 5: May 2007). Despite the obvious differences between an academic article and a blog entry, and the vast differences between Yoder (a professor of business) and Jurecic (a professor of composition), the two pieces are remarkably similar. Both professors take it upon themselves to diagnose a student as autistic. They carefully record behaviors that appear “odd.” Neither actually approaches the student in question, but privately they research autism. They speculate as to which of their teaching methods, if any, may positively impact the student. And, of course, they discuss their experiences with the student in a public venue, suggesting that their experiences have larger implications for how faculty members can help autistic college students. This is in spite of the fact that neither student is actually confirmed to be autistic, and in any event the publication of this information is arguably an unacceptable violation of student privacy.
See any problems here?
I propose a radical course of action for instructors who know or suspect that a student is autistic and may require additional accommodations. Instead of idly speculating about the situation, wasting time reading materials about autism which may or may not be relevant, and commenting about their students’ supposed oddities in public, how about actually talking to the students themselves?
This idea seems strange, I know, but I believe that autistic students know ourselves best, and that we have the right to participate in all matters concerning our education. While Professors Yoder and Jurecic may believe they are being considerate and well-intentioned, in fact their actions are paternalistic at best, while their words contribute to the marginalization of autistic people. Before assuming that a given autistic student thinks in pictures, why not ask that student if this is so? Instead of ignorantly speculating as to what a student needs, why not ask the student what accommodations may be of use to them? Like non-autistic students, autistic students are individuals who require different things. Simply reading a Temple Grandin book, or a random Internet site about how to accommodate autistic students, isn’t going to tell an instructor what they need to know about that particular student. Such problems are further compounded by the fact that information about autism, especially that written by non-autistic people, is often riddled with flaws and misrepresentations. Jurecic, for instance, spends quite a bit of time considering how “mind-blindness” may affect autistic student writing. But many autistic people would strongly disagree with the notion that we are “mind-blind”! Such are the pitfalls of relying on outsider information. Hence the reason why autistic college students need to actively participate in the process of attaining appropriate accommodations and, when necessary, explaining our differences and disabilities to faculty, administrators, and others. No other substitute will suffice.
We also need to be included in discussions regarding disability and higher education from the very outset. As these two examples illustrate, often the discourse about autism and higher education can be highly alienating to autistic people, in and of itself. We are too often seen as problems to be solved rather than students to be educated and served. That needs to change, and we need to be there for that change to happen.
by Alec Frazier
Editors’ Note: The issue of disclosure is also discussed in the Navigating College handbook. In particular, Amanda Vivian’s chapter entitled “Discussing Disability Issues with Friends and in Class” would make good reading alongside today’s blog post.
For people on the autism spectrum, arguably no situation is tougher than social interaction. The people you hang out with may realize that you do not act in accordance with what some people may think is “normal”. Chances are, you can put them at ease by explaining things for them. For this reason, it can sometimes be beneficial to inform people that you are autistic. However, this can also be a double-edged sword.
Suppose you have been in a common interest group (i.e. a school club, a religious group, or a study group). It is not illogical to assume that these people have your best interests at heart and that it is okay to tell them that you are autistic. I must reiterate though, that telling individual people should be handled on a case-by-case basis, because some people handle the information differently than others.
Suppose you have befriended someone individually. There is a very high probability that if that person spends any length of time with you, they will realize that something may be going on. Once again, choose carefully when and how much to disclose based on how you think the person will act.
If you were announcing to a group of people that you are autistic, make sure that it is at an appropriate place and time. Also make sure that the group as a whole has had sufficient time to get to know you. Please keep in mind that it is not always advisable to take this course of action, as some details of your life should not always be a topic of group discussion.
You do not need to tell your professors, other school faculty, and people you do business with that you are autistic unless a specific issue arises that can be explained by such a mention. It may be a good idea at first to simply tell them that you have a disability. If one of them asks what it is, that means that they are genuinely interested in learning about you, which generally is a positive thing. In that case, you can be honest with them and disclose the necessary information.
If a person does not seem like they will be receptive to the information, or that they will use it against you, it may be better not to make their acquaintance. There is no point to telling everybody that you are autistic. Only receptive people need know.
The key is to remember that there is nothing wrong with you, but if people can’t accept you it may be due to a character flaw of their own. Remember that acceptance and tolerance are not necessarily the same. Everybody has the right to be tolerated, but your true friends will accept you.
Alec Frazier is a 25 year old student with Asperger’s syndrome from Ithaca, New York. He currently attends the State University of New York’s University at Buffalo, where he is currently obtaining his bachelor’s degree in political science.
I became politically aware when I learned how to say “I don’t understand.” This didn’t happen until I was 20 years old.
There are some things that are harder for me to understand than others. My confusion peaked in freshman year of college, when my Women’s Studies class moved from “101” material into more abstract, jargon-heavy content. Words seemed to fly through the air without being anchored to anything so mundane as a stable definition. At the same time, I realized that what I had been taught in high school about writing thesis statements no longer applied to college: I was going to have to relearn the definition of a thesis. This would have been fine, except for the fact that I didn’t understand any of the definitions that people were giving me.
I was filled with shame about this. What kind of college student didn’t know what a thesis was? How had an introductory Women’s Studies class got so beyond me? Did I really deserve to be at college? So if I had to ask for clarification, I often pretended to “get it” after a cursory explanation, when really I was still confused.
My problem with admitting confusion was that I had internalized the idea that my worth as a student was based on my ability to understand things within the same timeframe that others did. I did not feel entitled to ask for clarification when I was confused, because this would be admitting to having failed in my duty to understand. I wanted to tell the truth about what I was thinking, so that I could learn more thoroughly. But I was afraid of being thought of as unfit to be at college, because I had internalized the idea that good students didn’t get as confused as I do.
This semester, we read Pedagogy of the Oppressed in my Education class. The author, Paulo Freire, talks about the process through which an oppressed person learns about their oppression, a process he calls “conscientization.” I underwent this process in my freshman year, and it happened because I was so very confused. After I started hitting cognitive dead ends in my classes, I got online and started reading. I learned about privilege, ableism, disability rights. I became conscious of my oppression as a disabled person. And I began to see that the ideas about what a student should be – the ideas that had caused me so much shame – were not inherent in the universe. They were a product of prejudice.
Becoming politically aware meant that I no longer felt so terrible about not fitting into society’s idea of what a student should be. I started to think that perhaps society should widen its idea of a student enough to include me. I started to think that I deserved to understand the material, even if my process was slower than that of some of my classmates. Learning about disability rights has empowered me to be in control of my education, to ask questions without shame, to sometimes try to change my environment instead of always trying to change myself. And I have learned to utter the words “I don’t understand,” without apology and in a loud, clear voice.
Zoe Gross is a contributor to the Navigating College handbook and blogs at Illusion of Competence.
Over the course of the last decade, autism has become increasingly visible in the public eye. Celebrities talk about it, news stories report on it, doctors and parents fret about it – but very often our national conversations about autism fail to include Autistic people ourselves. The Navigating College handbook and its associated website is an effort to try and address that problem, by putting the voices of those of us on the spectrum at the forefront of the discussion on how to include autistic people in higher education. We’ve written a great resource that is aimed first and foremost at reaching college students on the spectrum and is written by people who have been there. We know our own needs better than those who speak for us and about us.
Through first-hand experience and useful advice on issues ranging from classroom accommodations to dorm life to sexuality, we have tried to pull together a resource that is truly comprehensive. We made sure that while the classroom was one important part of what we chose to cover, it was not the only component of the handbook. While classes and homework are an important part of college, no one tries to tell non-disabled students that this is the totality of their college experience. Clubs, social activities, dormitories, parties, sex and relationships and countless other things should take up as much of your waking hours as schoolwork does. For those of you who will be living on campus, and even for many of you who will not be, college isn’t just a place to go to take courses — it is a way of life. We’d be doing you a disservice if we didn’t talk about the parts of the college experience that happen outside of the classroom.
Transition is one of the most intriguing times of life for people with and without disabilities. The path between being a child and becoming an adult is one that is fraught with both pitfalls and potential. Still, we believe it is a path that is well worth walking. No doors should be shut for those of us on the spectrum or with any other disability. By providing the right supports, accommodations and resources, we hope to make the higher education experience more inclusive and accessible for all. The Navigating College handbook is a vital first step towards accomplishing that. Thank you for your interest and we hope you enjoy your copy. Nothing About Us, Without Us!
The Autistic Self Advocacy Network