The Autistic Me

I am definitely a hypersensitive individual — physically (and emotionally). The cold weather of Minnesota forces me to wear more clothes, including hats, gloves, and even a face mask at times. Thermal pants for the windchill are also required some mornings. I itch. I scratch. I get annoyed. It's like sandpaper all over my body. I'm sure the dry skin caused by the cold, dry air, isn't helping matters. Both of my index fingers are cracked and have been bleeding, despite using a special petroleum jelly lotion. And in this cold, annoying weather I have managed to yet again fracture a bone or two. This time, in my right foot. Last year, it was my ribs. Mix school stress with the weather and my foot's sharp pains and you can understand why what I really want more than anything is to sit quietly at home, at my desk, writing and playing.

November 29, 2007, was a lousy day. I did poorly, very poorly, on an exam in statistics. The damage to self-esteem was fairly deep. I'm not supposed to do poorly on any test, in any class. I've seldom done well with written tests — it is painful to write for any length of time. As an undergraduate, I would write as much as I could before my hand and arm were too sore to continue. The alternative, and equally unsuccessful approach, was to write slowly. Either approach resulted in an incomplete test. I was sure graduate school would be different. First, most classes don't have tests! This is a great thing, since papers and research projects seem a lot more meaningful. In my opinion, a timed test is more a test of dexterity than knowledge. The notion is that if a student knows the material well, he or she can quickly write answers or do the necessary calculations. What if you know the material but can't write? Timed tests prove nothing at all. My fear of tests ...

In the last two weeks, I spoke at two universities, prepared two elaborate brochures, and continued analyzing research dealing with online communities and autism. To be blunt: I'm exhausted. And yet, tonight or tomorrow I will submit another proposal to present my research to a conference. Though I am tired, I also think my efforts are making a difference. That makes the discomfort, the nervousness, the anxiety, all worth it. Maybe one parent or teacher will learn something that will improve the educational experience of a strange student like me! I have done much better this year when speaking to groups on autism and developmental disorders. Maybe I'm more comfortable with the notion that I'm not "normal" and that's just the way life is. More comfortable isn't the same as "at ease" when speaking. But, I am doing better in public forums. Best of all, I received a thank-you note tonight from a professor. That did mean a lot to me. Maybe ...

I decided to create a separate collection of "static" documents on my personal Web site. Blogs are good for some things, but not for edited documents one hopes to maintain for a few years. http://www.tameri.com/csw/autism/ The documents might take a position or two, which will undoubtedly upset someone. Autism seems to attract disagreements. I can only be a voice in favor of science and pragmatism. My goal is to provide resources for parents, educators, and students. As a researcher, I have to hope people will support inquiry, but I have heard some advocates unwilling to consider research findings with open minds. I hope my writing does persuade some people to move away from certainty. We know very little about the causes and complications behind autism and pervasive developmental disorders. The best I can do is write about what we do know, while reminding visitors to my site that much, much more remains to be learned.

I wish I could educate far more teachers on developmental disorders and brain injuries so we don't keep pushing away some of our most gifted students. Autism spectrum disorders, frontal lobe traumas, and other conditions can cause an individual to struggle with a great many social situations, while also apparently contributing to "savant-like" gifts in other areas. The problem is pedagogical, but educators have adopted strategies for more than 30 years that encourage groups, collaboration, role playing, and other valid techniques that isolate and even alienate those with ASDs, lobe injuries, etc. In the past, we dismissed these students as "super geeks" — and like me, many were placed on "independent study" projects because teachers ran out of options. We really need to find ways to use technology to get past the social barriers, which I compare to being a non-native speaker of English. Probably a bad comparison, but I often feel I do not speak the sa...

I recently left two "Yahoo Groups" for autistic individuals and their families. Now, before you dismiss this as being hypersensitive in general, understand that I still read posting on several political, philosophical, and academic forums. These forums deal with controversial issues with some regularity. The difference seems to be that the autism forums were not able to moderate differences and find common ground. Instead, a passionate debate about religion (of all things) derailed one group for two weeks. If I were the moderator of a mailing list and forum dedicated to issues of autism, I would have put a quick stop to any discussion of religion with a "It's good if your church helps you, but let's refrain from discussions about faith." Instead, the agnostics, atheists, and believers kept insulting each other. Useless waste of time, if you ask me. Instead, we should be asking what services that were complete non-religious were offered and how t...

For a graduate course in curriculum, we have been asked to experiment with "mind mapping" software. As my previous post reflects, I've never been comfortable with such maps personally, though I realize many people find the exercises useful. I'm clearly in a minority. It is important that teachers understand any potential tool, whether or not they are comfortable, because students are not homogeneous in learning style. I love outlining... most people do not. I also like flowcharts, graphs, and charts. Order, lots of order, works to my advantage, even when my artistic output isn't "organized" in familiar ways. Background As an example of how to integrate new technologies for composition across the curriculum, I am proposing a series of units relating to radio. As radio has shifted to the Internet and podcasting, radio theatre has remained a part of the tradition, from rebroadcasts of classic "Old Time Radio" programs to original plays. Mapping I ...

Some weekends are long, even when they technically aren't that bad. They just seem to pass slowly, while I get nothing accomplished. I don't know why I am so exhausted by the weekends, but I am. It's like "playing normal" drains me so much that I need to decompress and can't. I have to be "normal" around so many people lately, and I'm doing it so poorly, that I'm frustrated and exhausted. There are signs of the exhaustion physically, too. I notice that as I type this, it is in sharp focus if I concentrate and stare, but the moment I relax even the slightest bit, the text blurs into a meaningless pattern of grey stripes on an off-white background. The situation with my back and shoulders is similar. If I focus, I can straighten and work past the pain, but the moment I relax, I slouch and feel the sharp needles that have been there all along. I should have worked on several school-related projects this weekend, but was too tired to th...

Before school started, my wife and I purchased a bright yellow 49cc scooter that qualifies as a "moped" in Minnesota. This has a number of benefits, not the least of which is that you can park a moped in a bike rack legally, while a motorcycle must park in a designated space or among cars. Why the exact same size 125cc cycle can't park in the same places as our scooter escapes me, but that's an issue for elected officials. The first day I tried to ride the scooter to school was a disaster. It kept dying along the way and eventually I called for help. The stress increased after we drove to a suburb, bought a trailer-hitch tow kit, and the scooter was too big for the tow platform. Calling the motorcycle dealership resulted in a towing company taking the scooter back to the shop for a few days. The fuel filter was replaced and the scooter was overhauled. When it was delivered for the second time, everything was much better, though not perfect. Unfortunately, ...

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....

The line between anxiety disorder and whatever it is I am is often too blurred to matter. Since my first semester at the university fell apart, the second and now the third bring nothing but dread. A lot of dread. I wish it were different, but there's so many other things also occurring in life that school is just one more thing -- and the thing I enjoy the least, slightly ahead of driving in Minnesota and taking public transit. The problem is that school merges all of my issues into one bundle. The urban setting of the campus, unlike the campus where my department was based, makes me tense. It is noisy, dirty, and unpleasant. I do not like it nearly as much as the other campus. Urban settings are not for me -- they are too intense. I do not like public transit, but driving in the area (and parking) is nearly impossible. The stress of planning how to get to and from campus is overwhelming. I especially dread the winter months. Normally, I need extra time to recover from s...

Having recently moved into our new house, I am finding it as overwhelming as anyone else might. Yet the things that bother me most are probably not the things that would worry most people. 1) Sounds . The house sounds different. The new new ceiling fan buzzes, lights in the basement hum, and the air conditioning noises are new to me. Even the oven's "pops and snaps" as it heats are different. 2) Smells . I know it might seem strange, but I notice the new smells. The main bathroom still smells of sealant and silicone caulking. The over even has a scent, which I can't explain. 3) Vibrations . The floor vibrates lightly when the air is running or when a jet passes overhead. The triple-pane windows block the sounds outside, but not the vibrations. 4) Light . We lack curtains, so too much light enters the house at times. I prefer things a bit dim. Sure, I can't wait for the house to be more organized. I want my bookcases in order so I can find books when I want. The ki...

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...

"Did you know Bill Gates and Tim Burton are probably on the spectrum?" Can we please stop such nonsense? I wouldn't want anyone to claim to know my various mental and physical conditions, much less publicize such assumptions. We have no right to try to associate someone else with an advocacy position, as if having some celebrity with a medical condition is essential to "the cause" (meaning fundraising, usually). The more people try to associate famous people with autism, ADHD, seizure disorders, and a host of other conditions, the more I hope I'm just a intellectual oddity with some creativity -- no disorders, injuries, or special conditions involved. I think attempts to find indicators for various conditions is getting so ridiculous that every geek, techie, goth, cyberpunk, loner, poet will be classified as disabled. Not that I'm currently all of the preceding, but the checklists presented for "the spectrum" is getting absurd. Simpli...

Because I tend to observe the negatives around me, people assume I am a negative person. It probably doesn't help that I don't speak about the positives nearly often enough. I sometimes assume the good things are obvious to everyone and don't need to be said. Who needs me to say that life is okay, for the most part? If you need to reminded that you woke up and were still alive, that strikes me as kind of odd. I admit, there are some things that really bother me. I hate most vibration, strong smells, and itchy clothing. I dislike "ignorance by choice" and any form of feigned stupidity. Yes, I'm hard to comprehend and can seem unhappy when I'm not, but noticing things that should be changed doesn't mean I overlook how many things are good. Overall, though, I like a lot more things than I dislike. Who doesn't like chocolate? Flowers? Oceans, rivers, and streams? Cool mornings? Most of all, how could someone not love cute furry pets? Oh, and b...

I hate road noise. I hate it a lot. It hurts my ears, vibrates my entire body, and makes me want to hide in a cave. I could hear the traffic noise in our previous apartment. I'd do what I could to close windows or hide in my bedroom. A busy road is a nightmare, worse than having a neighbor's radio stuck on the all polka station — at full volume. So, what happens when you have a flat tire on a city highway? You're stuck doing your best to change tires feet from traffic. The noise is louder, the smells worse, and the vibrations dig deeper into your core. Ribs, teeth, and even fingernails seem to shake. At least the tire was changed quickly enough. But it definitely ruined my ability to think or work for a few hours.

I like my routines. Actually, predictability and safety are what I like. It isn’t that I follow the same routine every day, just that I like to have things available to me in case I feel stressed. I want my radio programs at the times I expect. I hate it when television shows change times. I don't like to take new paths home. If things around me change too much, I panic. I like my pens, my paper, my desk just the way it should be — just in case I decide to write. For a number of reasons, I was thrown off schedule some years ago and never really recovered my schedule. My writing has suffered, my mind has suffered. I haven’t been able to restore my sense of order since the turn of the century, which sounds really strange. I was starting to write again about two years ago, it seems, then I ruined the creativity by returning to school. I miss my poetry, plays, and stories a lot. That bothers me. My hope was that I would be able to write more here, but instead I just want t...

I'm not sure if this is part of an atypical neurology or simply a personality quirk, but definitely have problems reading people. The minor examples include not knowing when someone is initiating a conversation or ending one. I also don't always notice what it is someone is really trying to discuss. It seems people introduce personal topics obliquely, which I miss almost every time. If you want to discuss how you feel about yourself, apparently the norm is to talk about someone with a similar problem or condition. This makes some logical sense, but I'll miss the point. This can make me seem like a lousy friend, I'm sure. When someone is nice, I don't always notice, nor do I always notice someone being impolite or slightly abusive. I've definitely missed "signals" from other people, positive and negative. Comments calling me "smart" or a "geek" can be misconstrued more often by me than most people. I tend to take things as...

Completing tasks is a real challenge for me. This is definitely why I was diagnosed with ADHD years before high-functioning autism became the official label for my odd mix of traits. ADHD with seizures, repetitive movements, and a long list of other ill-fitting characteristics. I have a lot of incomplete projects dating back more than two decades. I also have many completed projects I never seriously tried to publish or distribute. In other words, I do a lot of writing, sketching, programming, and planning without following through to the expected conclusion. What's strange is that I do complete, with a lot of anxiety from a perfectionist streak, school work, magazine columns, grant applications, handouts for my students, and projects assigned by other employers. So, it isn't everything I don't complete... just the projects I seem to really want to complete for myself. My perfectionism is limited (somewhat) by deadlines, but when there is no deadline, I never ...

I don't sleep well at night. I end up sitting in front of the TV, reading, or writing until I'm too exhausted to keep my eyes open... but I never seem to just go to bed and sleep like I think other people must do. My wife goes to bed and is asleep within minutes of 10:00. It is 1:37 at the moment, and I'm writing this, surfing the Web, playing chess, anything to get tired and fall asleep. I've even taken Tylenol PM on more than one occasion merely to sleep for more than a few hours. During the day, I can sleep. I shut down and sleep to hide from light, noise, and stress. I burrow under my covers, hide my eyes from any light, and sleep. Why can't I do that at night? Being tired all the time is miserable. It makes it difficult to concentrate. I feel like I'm moving in slow motion, and certainly thinking in slow motion! Could being sleepy all the time be why I never get the things done I want to finish? Or is there no connection to my productivity and ...

I love my wife, my cats, my family... but I wish I knew how to sound and act nicer. I can be curt, rude, blunt, or whatever else you want to call it. I would like to sound much nicer to the people about whom I care most. (Tangent: The editor in me forced a rewrite of "people I care most about" even though I know it is a silly compulsion to move a preposition.) I want to be mellow . I long to be a calming voice, not the loud, nervous, anxious person I am at times. Especially when I don't feel well, I can be a real jerk. No idea how I can change when I've wanted to be different most of my life. One minor thing goes wrong and I can't relax for hours or even days. It's not fair to anyone else.

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...

When I get nervous, like most people I stutter and stumble over words. I simply stumble more often than a lot of people. Speaking smoothly, clearly, and properly is an essential part of succeeding in life. It's shallow, certainly, but I certainly admit that I'm also not above making quick judgments based on how someone speaks. I definitely judge people on grammar and vocabulary. Worse, I do form opinions based on strong accents. That's human nature, but it isn't right. I speak very well if I rehearse ahead of time and stick to a visualized script. I can even do well with an outline, but I need a crutch. When I speak to a group, I see the words visually, as opposed to "hearing thoughts." This can cause stumbling, but usually it works to my advantage. Speaking slowly to a group is never a bad thing. Something I plan to write about at length in another journal entry is how I won my one and only election campaign. Let's be honest and admit it wasn...

I was reading LiveJournal today, the Asperger's Syndrome community, and encountered the recurring topic: "I'm an Aspie, but my therapist denies it." Okay, I'm not a therapist, but I'm about to play one online. (That's sarcasm.) I believe most therapists, regardless of their educational backgrounds, are now quite familiar with the terms "Autism Spectrum Disorder" and "Asperger's Disorder / Syndrome." It takes a lot of hubris on the part of a patient to assume that he or she knows more about autism than a clinician. It takes even more hubris (or something else) to self-diagnose yourself with any mental health condition. People wonder why I think autism is approaching the level of "trendy" once reserved for ADD/ADHD need only read any of the online communities for more than three weeks. Yes, there are a lot of people with an ASD in these communities. There are also a lot of people looking for a mix of explanation ...

Over the last few months, I've been asked several times about friends. More precisely, the question has been if I have any. When I read online comments from "ASD" individuals, many are upset that they have no friends and seem to do everything "wrong" in a relationship. I think this is more a situation of being human than being someone with a disorder... humanity struggles to maintain connections. Yes, I do everything wrong and seem disinterested even when I am not. That certainly does upset me when I do care about someone. But is this due to "autism" or simply poor social skills? People I have truly cared about needed me to "appear more interested" in their lives. I was interested, judging by my notes and journal entries. But, I wasn't able to signal how interested I was. Instead, I came across as self-absorbed. One even described me as "calculating" — and indeed, I was "calculating" in the sense that I ...

Computers are the source of frustration for all of us at one time or another. Two nights ago, I lost a file with the outline of 50 pages I had read. I was using Windows, which was the problem — Windows can be a real nightmare when software misbehaves. (One program should never crash the entire system. I had a video driver fail for some reason.) Most people would be upset, maybe say some choice words, and get back to work. I sat on the floor, legs crossed, and rocked for nearly 20 minutes. I pounded my fists against my legs, unable to calm down and focus on the need to retype the file. I could have sat there, rocking, murmuring, and pounding on my legs for hours if it weren't for my wife's incredible calm and reassurance. She ended up retyping the notes, with me dictating what I had lost. Without her, I would not have the ability to function as a student and teacher. I know repetitive movements, including self-harm, is a part of autism. I don't have to like...

Though the "autistic" label is fairly new, I have been labeled many things in the past. As I think about the past and present experiences, I realize that including bits and pieces from my evaluation in the book I'm completing will help others with similar experiences. I know I am not the only autistic person to have been considered slow or even mentally retarded. I also have read numerous online discussion groups in which people have posted about being diagnosed with OCD, ADD / ADHD, social anxiety, and even PTSD. I'm not sure how the Post Traumatic Stress Disorder fits with autism, but several HFA/ AS individuals report this as an initial diagnosis. My wife is certain I was, am, and always will be HFA. My mannerism, my speech patterns (poor affect, or even inappropriate affect), and my stereotyped movements under stress are mere bits of the picture, as they say. The new diagnosis was not based on any new evaluation results. My original (second grade...

Even as an adult in my mid-30s, I am struggling as a graduate student. I can do the work, I can read the texts, but I am struggling. What is the issue? Probably the most important of all: In eight months I have yet to form a single personal connection within my doctoral program. My social anxiety is too high to attend gatherings. I keep thinking I'm going to attend an event, but I have only managed to attend a play -- nothing else outside of classes. I fear going to campus, much of the time. It takes a lot of energy to attend class. Sadly, I sit and shake in my classes, even though I don't hesitate to speak. Classmates have called me "The Ghost" to my face. I'm an outsider. The importance of connections cannot be overstated. You need to connect with classmates and with instructors. I would tell any student that you need a mentor in a degree program. Without a mentor and a clear goal, you will struggle -- as I am doing now. A mentor helps you nav...

I wasn't even thinking about writing on or talking about my story until I arrived in Minnesota. Here's one reason that changed: "You're not really helping anyone if you become some sort of activist or motivational speaker." I wasn't sure how to respond. A professor was suggesting I not tell my story. At the time, I was only considering whether or not to disclose to other instructors and students that I had some medical conditions that were less obvious than my occasional use of a cane. Anytime I'm told what not to do, I start to question why. "You risk giving people false hope if you tell them anything is possible. You should instead argue for more public assistance and protection." There it was. Silly me, I might make the mistake of being a role model and not the type approved of by this professor. I wouldn't be proving how terrible America was, how unfair life is, or whatever beliefs this professor held. She could sense I ...

Many of the postings to blogs, bulletin boards, forums, and other forms of online expression I have read seem to reflect serious depression. Leaving aside the question of does online use cause depression or reflect it, I sense the postings do reveal a problem experienced by many HFA/AS individuals. When people gather and complain, it might be that each new posting is simply venting. There is a sense that if others can complain, so can I. But I believe it is much deeper for autistic individuals. How can you not be depressed at time when social connections are difficult? How can you not wonder what it is like to understand vocal tones and facial expressions without having to memorize pages from books on body language? How can you not feel isolated when so many people avoid you? Put simply, when your social skills are the ones most affected by your disability, it is only logical that you will suffer some periods of depression related to the isolation we experience. Ever...

There are people I consider mental health hypochondriacs. They read a list of "symptoms" and self-diagnose themselves with everything from attention deficits to autism disorders. If there's a way to excuse a lack of success, self-control, organization, healthy relationships, and general contentment, these people will find it in a book or on a Web site. Worse, we have parents and teachers labeling students in ways that might end up doing real harm to future generations. I'll offer the standard disclaimer: I do believe there are disorders and conditions affecting a lot of students. I also admit that some might be more common than in the past — might be, but not necessarily are. What qualifies me to say this? Aren't I being a hypocrite if I'm accepting the label of "autistic" and writing about my experiences? Blunt answer: I was seriously injured during birth. I do not doubt my medical history is being overlaid with current trends in psyc...

As I compile my notes for essays and a book, I realize how much easier it is to be considered "different" your entire life versus a late-in-life diagnosis of Asperger's Syndrome. The more I read about and communicate with AS students and adults, the more I appreciate their unique experiences. I was never considered normal, so my eccentricities were tolerated. Independent study was offered more than once, which I loved. When you are perceived as perfectly normal, I imagine things must be more difficult. No one believes you when you complain about sounds, smells, textures, or colors. You're considered moody or depressed. Any difficulties in class are confused with learning disabilities or ADD. At least no one expected normalcy from me.

Probably the most difficult decision anyone with a developmental disorder can make is who to tell and how. I certainly do not have a good answer for either question, since I resist the labels experts have offered. There are benefits to disclosure, based on the experiences of others. First, you have "official" recognition, which includes various protections legally. If I have a problem related to my physical limitations, it helps to have some legal basis when seeking corrective measures. Second, the reality in my field (education) is that a disability can be an asset, increasing your value to a university. The obvious negatives to disclosure relate to the biases and even fears people have regarding neurological conditions. Most of us know that a palsy is not contagious. Tremors do not spread from me to my students or classmates. My long list of behavioral glitches are also not going to spread throughout the classroom. Yet there are those who cannot deal with difference. ...

When I was diagnosed as autistic in 2006, I was 37 years old. I'm still struggling to make sense of the diagnosis, wondering what it explains and what it does not explain. More importantly, I am wondering if I can believe the diagnosis or if it is like so many others I have heard from doctors and specialists; it is a placeholder waiting to be replaced with the next trendy possibility. This blog might not receive many updates or it might be a place where I work out my thoughts. Actually, even starting this blog seems too open in some ways, but necessary in others. I want to see if anyone cares what I have to say on the subject while realizing the odds of being located on Blogger are slim and none. The "signal to noise" ratio here is much to high to know if I will reach one other person. For now, I'm only planning to post my own thoughts. I do not need to link to every organization, reprint every news story, or spread rumors posing as science. What I want to do is e...