The Autistic Me

Cats, I am told, are like two-year-old children. Last night was one of those long nights with one sick and one demanding kid, then. My wife is visiting family in California and I am ill-equipped at the moment to deal with extra stress. I believe it is because the start of this school year is reminding me of last year — so I am already anxious. I did okay last summer because I was focused on the new job and things hadn't yet started to spiral out of control. Then, J.C. Kitty passed away, the house flooded, and my workplace became more complex than I could anticipate. Add to that a string of health issues and my ability to manage alone withered away under stress. A few months into the school year and I needed extra help managing the household. Last night, about 11 p.m., Mutt was sick. Very sick. He needed a bath, the bed comforter had to be changed… and then he was sick again. Another bath. At the same time, his brother Alex was demanding food, but finding none of the cho...

Yesterday, it was in the low 90s in Minnesota. Today, it is over 100F. That's a huge change from three weeks ago when we saw snow flurries in the air. I am not a cold weather person. Cold weather means clothing I hate: itch-inducing layers, gloves, thick socks, knit caps, and so on. I've written several times about hating winter wear, and my annual frostbite / frost "nip" experiences resulting from my distaste for some of the clothes. I'm also not a huge fan of blistering heat. I'm comfortable from the low 50s into the mid 80s. There's no way to dislike a nice, partly cloudy 72F day with flowers in bloom. That's perfection, especially if you get to sit outside and relax. Still, if I have to choose between sub-zero temperatures and the 110F summers of my youth, I'd opt for the heat — air conditioning is a great thing. The cold causes cracked skin, sore joints, and ice patches I find without any effort. Summer heat can at least be dealt with: fans, a...

I joined Twitter on the first day of 2011 ( @autisticme ). I also joined a Twibe (seriously?) and registered with WeFollow.com to learn more about what autism-related Twitter feeds might exist. Within a few days, I was already observing a familiar debate. In fact, it the debate I described in the single most-viewed blog entry of The Autistic Me, which dates back to 2008 (see " Logos, Symbols, and Ribbons "). Various "Aspie Advocates" are still protesting the puzzle piece. I'm sure they will be protesting the puzzle piece next year, in five years, and a decade from now. The "neurodiverstiy" (ND) movement doesn't like the puzzle piece. (Everyone's brain is different: neurological diversity is a fact of life.) Honestly, I don't care for the puzzle piece either. I've written and said that I find it personally off-putting. If I am a puzzle, I'm not more or less of a puzzle than most human beings. I'm told, "Oh, no, it is autism ...

I don't view myself as part of the market for most autism books found on bookstore shelves, most of which are for parents. These books tend to cover familiar material, too often including data and information I consider faulty or even misleading. However, when I was asked by a representative of Skyhorse Publishing if I might review a book for parents with a section on education, I consented. 1,001 Tips for the Parents of Autistic Boys: Everything You Need to Know about Diagnosis, Doctors, Schools, Taxes, Vacations, Babysitters, Treatment, Food, and More by Ken Siri ISBN: 978-1-61608-105-8 I cannot endorse this text for a number of reasons, some merely stylistic but some that are, at least for me, far more important. Stylistic Issues The "1,001 Tips" are not actually individual tips. Most of the "tips" are composed of a few sentences from other sources. Too many of these sources are websites, not academic journals or scholarly texts. Some of the sourcing is uncle...

The word "community" is overused in academic fields, but it is the best word for what it on my mind today. I closed "The Autistic Place" today. It was meant to be an online community dedicated to issues of autism and education. The reality is, however, that online communities come and go so rapidly that what was popular a year or two ago is often "inactive" now. There are dozens of Yahoo groups that are dedicated to autism. Most of these were active five years ago, but have since fallen out of favor with users. Just as the Usenet groups and most "listservs" have faded away in the last five years, so have many online forums. The Internet has accelerated the speed with which a community grows, propers, and then declines. The timeline of the Internet is punctuated by technologies and business ideas that were "hot" for a moment. When is the last time you used IRC or read a newsgroup? Remember CompuServe? Prodigy? And Netscape was near...

My doctoral dissertation included a chapter on the definitions of "autism." I located regional differences in criteria and these differences correlate to diagnostic "clusters" where the more liberal diagnostic traditions are emerging. Some clinicians call for a broad application of "autismness" that scales from "zero autismness" to "classic autism." This would result in a lot of autism diagnoses. Others, especially researchers, cling to the DSM-III tradition that autism cannot be comorbid with a known physical diagnosis. This was explained to me in this way: if you know the cause, you can research and treat accordingly. Things we do know to be "medical" are moved out of the DSM on a regular basis. This is a logical strategy for categorizing and treating conditions. You wouldn't study Fragile X the same way you might neurotoxin exposure. I fall into the "if you know it, classify it" camp. If I know the cause of my...

My wife and I went to the Minnesota State Fair last Thursday. There were, according to the news, 179,000 people there on opening day. I hate crowds and noise, but did okay at the fair. One reason is I knew exactly what I wanted to see, where those things were, and where the fair was least crowded. It helps to have a plan. My priority was the animals. I love the small mammals: rabbits, hares, and other little creatures. I always loved wandering the 4H and FFA displays back in Central California, too. There's something wonderful about animals. Plus, people are busy doing other things at an urban fair, so the livestock areas are a good place to be. I guess people here care more about the rides and food, but I think fairs should be a celebration of the farm life. The only problems I had were in the art exhibits. The people smelled bad, which sounds funny after wandering livestock areas. Too many people here smoke. How much do you have to smoke to smell like ashtrays? Apparently smoking...

I am quite open that I support genetic-based theories of autism etiology, while also open to the notion of triggers. Genetic predisposition is only that: predisposition. Many genetic conditions respond to triggers, so the two are not exclusionary. Today, there is a bit more on the genetics of autism. But even the most common genetic changes in his study were found in only 1% or less of patients, Scherer says. That suggests that "most individuals with autism are probably genetically quite unique, each having their own genetic form of autism," says Scherer, of the Hospital for Sick Children in Toronto, one of 120 scientists from 11 countries working on the study, called the Autism Genome Project. As co-author Stanley Nelson of the University of California-Los Angeles describes it, "If you had 100 kids with autism, you could have 100 different genetic causes." I have written before about the likelihood of the following: [D]octors may be able to use these findings to of...

The academic job hunt is over, concluding after 61 applications and near-exhaustion. I did not locate a post at a college or university and do not intend to look again next year. My Ph.D defense is May 11. That, and a handful of remaining conference appearances, will mark the end of my time in academia -- at least until a university invites me to teach based on my creative writing success. That is not sarcasm. I have faith in my writing. Plan A was to complete the Ph.D and locate a tenure-track post, enabling us to have something of a normal life. I'd write and teach. Plan A is inoperative. Plan B was to find work locally, allowing us to save money towards moving back to California. To date, this has proven to be an unsuccessful plan. I have "Monster.com" and Indeed alerts, but this is a lousy job market. Researching teaching K-12 again, I realized that teaching in a state that is closing dozens of schools isn't promising. So, onward… Plan C, the current operational o...

Movies are a challenge for me. I can't even recall the last movie I saw before tonight. It was something in California -- either an X-Men movie or Star Wars, Episode I. (Neither would be my choice. I like cartoons and romantic comedies, usually.) But, I am in Davis, CA, alone, and wanted to do something tonight. Even though it was $11.50 (plus $4 for snacks), I decided to try Up! There is a lot to be said for going to a movie in a college town, in the theatre closest to campus. No children. No cell phones. Actually... almost no people on a Friday night showing in June. It was great. The movie was touching, emotional... and nothing like watching on a television. Because of the price, I doubt I would do this often. But, I'm glad I did. I had forgotten how huge the screens are. Anyway, it turns out that I can go to a movie -- when almost no one else is in the theater. Wish one person had been with me. The start of Up! would have been nice to share in a theater with her....

From the San Jose Mercury News: http://www.mercurynews.com/breakingnews/ci_12312452 Autism in California increases twelvefold By Sandy Kleffman Updated: 05/06/2009 08:12:02 PM PDT California saw a twelvefold increase during the past two decades in the number of autistic people who are receiving services through regional centers, a new state study reveals. Notice this is the number of people receiving services. This may or may not reflect an increase in autism diagnoses, a decrease in social stigma, or other factors. Also, in a slower economy, more people seek public assistance. From 1987 to 2007, the number of children and adults with autism served by regional centers rose from 2,701 to 34,656, notes a study released this week by the state Department of Developmental Services. This is a huge increase, but I would like to know the percentage increase. I realize that California did not double in population, so no matter what this is an exponential increase in autism services. St...

Once I earn my degree and escape Minnesota, I am going to do every thing I can to reset myself and my path in life. Since elementary school, I have wanted to be full-time writer. While I have an interest in different forms, from reporting to dramatic writing, I always view writing as a way to inform and educate a mass audience. I don't see the same divisions between reporting and creative writing that my professors saw. In fact, it's clear that journalism is changing... and a lot of great reporters did write with a creative flair before the 1970s. I'm not even sure what I will do with my degree. It's supposed to open doors, in theory. "I have Ph.D form a writing / communications program. You should publish me." Okay, maybe that's not the exact pitch, but it was meant to help. Plus, in theory it gives me the ability to teach -- thereby funding my writing time. Honestly, I want to sit and write. I want to string words together in such a manner as...

I probably don't express it often enough, and certainly not well enough, but I am lucky to have a wife who is also my best friend and the reason I haven't given up while in Minnesota. Somedays are really tough on me, which means they are even tougher on her. I have wanted to quit and return home to California throughout most of this semester. But I'm here to eventually give her the life she deserves. She certainly deserves a break after helping me through two graduate programs.

Why in the world CNN and many other media outlets decided to give "equal time" to various autism experts like Jenny McCarthy is beyond me. This is like giving equal time to the Flat Earth Society when discussing El Niño and ocean currents. McCarthy, Kirby, and others are using Autism Awareness Day to promote misinformation, speculation, and conspiracy theories. I was going to rant and rave, but I know the anti-vaccine mob will never be convinced of anything. We could present a thousand reports on genetic predisposition, genetic triggers, and alternative environmental factors... it would not matter. Some, like myself, believe there are environmental triggers, but the popular media can't write a story without mentioning MMR vaccines. Autism clusters in California overlap specific agricultural crops. This points to anything from soil contamination to the residual pesticides wafting in the local air. Who knows? I certainly would be curious to map asthma and autism,...

It has been a tough couple of weeks. I skipped a class last week because I could not speak well and was having a great deal of difficulty walking. My mind and body are not in agreement lately. With all that has been happening at the university, it was reasonable not to attend class with flapping arms and strange verbal outbursts. I wish I understood myself and could control my arms, my legs, and my mouth! This weekend I slipped down our basement stairs, fell into the walls more than once, and whacked my face against a bookcase in our bedroom. My internal sense of balance is definitely offline; whatever internal gyroscope most humans have is malfunctioning. The verbalizations, usually grunts and shrieks from pain, are annoying. It is worse than an elderly man trying to stand up from a beanbag. I yelp in agony, randomly, without realizing it. Quite annoying. You would think I could bite my lip or something. It scares the cats. The pain seems to result in something like the chill...

I was told to edit this for “tone” but it says what I want it to say. I am tired of being told to be patient, that “now” isn’t the time to be angry. Now is definitely the time to be demanding action. I should have been a lot more proactive a lot earlier. Waiting was pointless. I came to the University of Minnesota’s Dept. of Rhetoric thanks to a DOVE (Diversity of Views and Experiences) Fellowship. My wife and I relocated from California because we had the impression the department and university would be inviting, supportive, and, most of all, a place where I would not be excluded due to differences. It should be no secret to anyone that my fellowship and my studies are the result of a severe brain trauma. I have talked to many of my peers and some faculty about the injuries and their consequences. I never hide the following conditions: Palsy and partial paralysis from neurological damage; Six years in a body brace for spinal damage; Chronic pain, migraines, and hypersensitivity t...

Today the media are reporting an analysis of autism rates in California since the removal of thimerosal from most vaccines. The autism rate, or more accurately the rate of diagnoses, is still climbing in the state. Study challenges drug's role in autism By Jia-Rui Chong, Los Angeles Times Staff Writer 5:15 PM PST, January 7, 2008 The prevalence of autism in California children continued to rise after many vaccine manufacturers started to remove the mercury-based preservative thimerosal in 1999, suggesting that the chemical was not a primary cause of the disorder, according to a study released Monday. The analysis found that from 2004 to 2007, when exposure to thimerosal dropped significantly for 3- to 5-year-olds, the rate continued to increase in that group from 3.0 to 4.1 per 1,000 children. "If mercury exposure in vaccines was a major cause of autism, then the number of ... affected kids should have diminished once they were no longer exposed to thimerosal," said Dr...

I need routines, and this school year (as well as the move to the Midwest in general) has already been playing havoc with my routines. Plus, I simply don't like the claustrophobia I am experiencing in the city. Today was tough. I held on as long as I could, but eventually my body gave out an hour before my last class ended. Maybe it was even sooner than that. I was starting to bloat, which I've never understood but think might relate to pain. I get an upset stomach, acidic and burning, so there must be a correlation. I was shaking, had a headache, and felt lousy overall. I just wanted to get off campus and eat something non-spicy. The way I try to make it through each day is by telling myself that eventually I won't be here. I'll be back in what I consider normal. I want my dinner at 5 or 6, not 8:30 p.m. twice a week. That's hard on my system. I want to sleep eight hours more than two days a week. I want merge lanes longer than the width of an overpass....

We are in the process of moving, which is overwhelming for most people. In my case, it's physically and emotionally debilitating this week. I am exhausted just thinking about all the productivity lost during the last year... and now I will lose at least another year. Worse, I know this move is temporary because I would never settle here — meaning I'll lose productive time again in a few short years. When we moved from California to Minnesota, I had carefully arranged a dozen or so projects I wanted to complete in the coming months. Those projects are still in boxes and in disarray. Most were plays and short stories. There are a few computer projects, and several Web site updates. These are all sitting in boxes, frustrating me. I need a better system. I have a portable file box labeled "Current Project" but not every current project is in the box. It's maddening. I need order! Time lost to panic, to organizing, and to yet more panic is time lost forever...

Thursday I was fortunate enough to attend a Minnesota Public Radio forum on autism with Prof. Roy Richard Grinker, one of America's leading anthropologists and the grandson of one of our greatest psychiatric minds. I won't pitch Grinker's book Unstrange Minds , beyond writing that anyone interested in autism and the experiences of a parent should read this book. (Read any of Grinker's books, not only Unstrange Minds , by the way, for a great insight into how anthropology works.) What struck me was not Prof. Grinker's wonderful presentation, but was the faith of some parents in the notion that mercury causes autism. Not that these parents didn't think there was some genetic factor, I admit, but that these parents were far more concerned with mercury and "toxins" than any realistic research. These people seemed as strange to me as those people certain that Israel was behind 9/11. Those who suggest "mere" jet fuel could not bring down a buil...