The Autistic Me

I understand that holiday fundraising is a tradition. Here's a cute child. You care about children. Send us money. At the end of every year, I receive dozens of emails from autism advocacy groups. The higher-end email newsletters from Generation Rescue and Autism Speaks offer "hope" for a cure… someday. Other emails promise recovery through "treatments" ranging from fad diets to pressure chambers. Sure, autism is just like recovering from a deep sea dive. It is almost impossible to judge these organizations and determine which are worth money or time. I don't send money to these groups and I'm not as involved locally as I was when we lived in Minnesota. I'm on a single board and volunteer to speak from time to time. I'm not convinced even the more serious organizations are accomplishing much, beyond "awareness" of autism. We're aware. Thank you. Now what? I'm not sure what should be next. I've written before that...

According to federal laws, public schools and those post-secondary institutions accepting public monies (most colleges and universities accepts grants and federal monies) must make every “reasonable” effort to accommodate students with special needs. What is reasonable when schools are running deficits? Rising Special Ed Cases are Huge Cost by Jeffrey Meitrodt and Kim McGuire, Star Tribune Updated: March 3, 2013 - 6:07 AM Room 112 is walled off from the rest of a Maplewood public school by an ugly row of concrete blocks. Its wooden entrance was replaced with a steel door, and the carpet and plumbing fixtures removed, all so its sole occupant — an 8-year-old boy prone to attacking teachers and classmates — would have nothing to destroy during his daily outbursts. Even his books and toys were kept on a cart that could be wheeled away at a moment’s notice. Every school day, the boy, who has autism and doesn’t speak, came to the barren cell built only for him. Two adults spent a...

From the American Association of Universities: H.R. 1, the FY11 continuing resolution introduced last week in the House, […] would truly harm this nation’s capacity for innovation by slashing research spending for nearly every agency that sponsors scientific research. This is exactly the wrong approach to deficit reduction, and it is our hope that the Senate, the President, and ultimately the House will agree on deficit reduction measures that enhance, not stifle, innovation and long-term economic growth. We are concerned that the President’s proposal to eliminate the in-school interest subsidy on loans to graduate students as a means of covering some of the costs of the Pell program may discourage American students from attending graduate school at a time when the nation needs to encourage its own best talent. We look forward to working with the Administration and with Congress to mitigate any negative impact on these students. It is likely I am leaving autism research behind, as the...

Researchers and scientists are human. This means that despite their best efforts, they are shaped by their own biases and experiences. It also means they exist in a world of politics -- from university politics to the politics of professional organizations. And make no mistake about it, government and non-profit organizations make research funding decisions based on politics, as well. Most scientists and researchers I know were drawn to research for personal reasons. For example, many cancer researchers are motivated because they lost friends or relatives to cancer. The goal is still altruistic, in my opinion, but there is something that nudges each of us interested in research to pursue specific questions. I do want to clarify that not all researchers are scientists. Researchers in the humanities might borrow terms and techniques from the "hard sciences," but social science and general humanities research is often overtly political. This research is sometimes called "ac...

With Autism Awareness Month beginning, so are the annual debates on various online forums and within the media. For the next month, expect stories on the debates, the controversies, etc. involving autism. On LiveJournal yesterday there were more than 50 posts within a few hours on the puzzle piece icons / logos used by various autism-related organizations. The vast majority of posts were from people with ASDs who view the puzzle quite negatively. One reason for the depth of distaste is the association of the puzzle with Autism Speaks. If you really want to get people arguing, mention Autism Speaks, Generation Rescue, Autism Society of America, and Autism Self-Advocacy Network within any forum. The views of these organizations are often not grounded so much in logic as faith. Some people really, really dislike one or more of these groups. The groups themselves fight for funding and public attention, plus there is local-level animosity in some places. I am a member of the Autism So...

In several earlier posts I have noted systemic failures at the University of Minnesota. In August, 2006, my misadventures began. By the end of September, my position in the Writing Center ended in disaster and a complaint to the university relating to the experience. The university has been less and less welcoming with each new semester. The university is nothing like my experiences at Fresno State or my initial studies at USC. My classroom studies in English and journalism at USC were relatively uneventful. (Problems at USC were limited to one person in the School of Education, after I completed my undergraduate studies.) Fresno State went relatively well, too, with a 4.0 GPA and my only issues involving paperwork nonsense that occurs everywhere. I was never “disabled” at USC. I was only listed as disabled at Fresno State after having issues walking across the campus in a timely fashion. I am slow, especially when my back and legs hurt. Still, this was a minor issue and the university...