The Autistic Me

"Smile," the photographer kept directing me. "I am," I kept replying. "Look at the girls and smile." "I am. How could I not be smiling?" On the way home, our five-year-old foster daughter asked why Daddy can't smile. I smiled. Or so I thought. My wife finally explained, "If Daddy can't see his face, his brain thinks he's smiling but he isn't. He has to really work at it. It's called paralysis. The doctor broke Daddy, remember?" And in that moment, I had a flashback to an annual review meeting when a department chair said I didn't smile or seem happy and probably wasn't a good fit within the program. It was the start of a very rapid decline at that job. Everything I hate about being judged by social skills. My voice, my facial expressions, my gestures… so many things I try to control yet fail to control properly. When we tell autistics or other disabled people they need to "Be happy...

As September ended I was involved in what seemed to be a minor traffic accident. I was rear-ended while driving our 18-year-old Jeep Cherokee. Unfortunately, the accident was too much for the Jeep: the frame was bent by the impact. The Jeep was the "real" last Cherokee Classic. Not a Sport. Not cheap decals of the model name. A 4.0L in-line six-cylinder 4-by-4 we took off-road and used for everything. It hauled furniture, cats, trees, bikes, friends, and family. Over the 18 years, it was like a family member. We knew it couldn't last forever, especially since moving to states with salted roads in the winter. But, we wanted it to keep running for another two or three years. Losing the Jeep is weird. I knew how it should sound. I knew how the steering and braking should feel. I could recognize its engine when my wife drove it to and from work. Now, it's sitting in a lot, waiting to be hauled away to an unceremonious ending. It doesn't seem fair, for some...

Love (Photo credit: praram ) My wife and I were discussing the fact that many of the adults with autism spectrum disorders I've met are, forgive me, but obsessed with finding love. It seems "love" is an overriding concern to them. This interest in love didn't seem like the interest in dating I've heard among other groups. No, this is a quest for "love" as if there isn't a (few) steps between meeting and love. Two of the self-described "Aspies" I've met were asking me to help because they were accused of stalking on college campuses. They both told me they were trying to let girls know they wanted to date because they were in love. Someone needed to explain meeting people, dating, and what "love" is — and what it is not. It turns out, they really didn't know what was "acceptable" and what was "unacceptable" when trying to meet someone and/or ask that person on a date. Polite rejections were n...

Bullying is nothing new to me. Even as a second grade student I could tell you why I was a target for bullies. But, when I saw the headline "Predictors of Bullying of Autistic Children Identified," I found myself reading the story below on Medscape ( http://www.medscape.com/viewarticle/743027 ). Maybe I was searching for a solution I know doesn't exist. Yes, I am cynical about human nature. (Read my previous post on lying and narcissism as they relate to popularity and power: Social Success and Narcissism ) My simple theory on bullying: people of all ages, young and old, test each other to determine the nature of the "competition" in a social group. We measure people, to locate the strongest and weakest in the group. Bullying is an extreme version of this social testing. Even those of us who want to believe we are exempt from such impulses rarely are. Every group has power rankings, the challenge is to see people beyond those social standings. Predictors of Bull...

I've been swamped for the last week, but that doesn't mean I haven't been pondering "big ideas" while working. One of the topics I can't stop pondering is why so much value is placed on "empathy" and "social skills" when the best of the best at imitating these are often the worst of the worst people. You don't believe me? There are numerous studies indicating leaders (think Presidents and the list is long) have narcissistic tendencies, as well as a dash of paranoia. Nationally elected politicians also score high on communications measures of social lying. I located more than 100 unique studies indicating that the ability to manipulate people, well-intentioned or not, corresponds to personal popularity. One study of young children tested their ability to lie and correlated "social lying skills" with popularity. Empathy is "the ability to understand the feelings and desires or needs of others." When tested, narci...

Me : Why are people so personally rude via e-mail and blog comments? I'm deleting more mail and posts than ever lately.  Friend : What are your blog topics? Me : I maintain websites on economic theory, political rhetoric, technology, autism, creative writing, and philosophy.  Friend : You do realize only creative writing and technology aren't likely to trigger hate mail. Me : It seems Linux is a religion.  Friend : Says the person with an Apple sticker on every vehicle.  Sometimes, it is easy to forget a personal zealotry. I am having a strong reaction to the fact my future employer is an all-Windows campus. Yes, I use Windows sometimes — but I just uninstalled Boot Camp from my Mac and removed the last Windows software.  Turns out, I am a fanatic, too. 

I maintain several blogs, all started as part of a class project some years ago. (See Four Years as an Autism Blogger for the history.) One of the things you have to accept when writing in public forums is that some people will feel compelled to insult and attack an author instead of his or her writings. Also, you have to accept that though you are writing from one perspective (which should be painfully obvious to all readers) someone will be upset that you don't share his or her perspective. These are the "whatever" moments of writing, especially of blogging. I write a monthly column for a regional magazine. The column has nothing to do with autism or special education. I write on technology issues. But, as any technologist will affirm, technology preferences and biases are accompanied by a religious fervor. Armies of zealots, the true believers, will descend on any writer daring to question their beloved operating system, hardware, application, or programming langu...

Another section of my book on relationships and autism. I'll be adding citations to the final edition. For now, you can read the bibliography on this blog for additional resources I have consulted. Desires and Needs Human relationships come down to our desires and our needs as they relate to social connections. Psychologists and social experts can and do argue over the distinction between a desire and need, and I realize plenty of scientists assert the only real “needs” are biological. I am not using the biological definitions in this text, I’m relying on terms from marriage and family counselors. A psychology need is something necessary to develop a sense of self. If you want to learn more about needs, there are several books and websites with information on Abraham Maslow’s theories. By contrast, a desire is something we want, but that is unessential to the development of self-awareness. Philosophers also consider desires versus needs.  Allow me another moment of blunt honesty: ...

Over at About.com, Lisa has posted the story of a parent. This parent credits hard work for the success of her child with autism. I don't disagree that parental involvement helps every child, but I also don't believe that parents can help every child with autism become an independent adult. Let's be bluntly, even brutally, honest with ourselves. I have met parents who did as much as my own parents, from physical therapies to demanding the schools do better to meet my needs. These parents have spared no amount of time or effort to help their children, often sacrificing dual incomes to have one parent at home full-time. And yet, for all their efforts, there is negligible improvement, beyond what might be expected as an autistic child ages. Yes, improvement, but not enough to live independently or to have the types of social connections the parents envisioned. You can spend all the time and energy humanly possible on the "recovery" of your autistic child and no...

A simple question as the new year approaches: What path should I take? More importantly, what is best for both my wife and me? I am out of ideas. The past offers lessons of what I should not do, if I pay attention. But what should I do? In general, I'm just annoyed. I feel like the last 20 years have been wasted, professionally. I'm unemployed and overeducated. My wife and our "kids" (the cats) deserve so much better than I've been able to deliver. It seems an inescapable conclusion after 20 years that education is not a field for me, at least not in the humanities. I don't fit politically, philosophically, temperamentally, or in almost any other way within the professions of education. I don't even fit physically or intellectually. I love learning a lot, but that's definitely insufficient in a field dominated more by political views than intellectual curiosity. They say you should learn from the past. There are many years I dislike and will ne...

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...

Yesterday I spent several hours holding one of our cats, Jordan, knowing she needed love and attention. It was, sadly, the end of her battle against the ravages of age. I don't know how strange it is, but I spent much of the time telling her how much I enjoyed various things she did throughout life. I whispered to her and told her how much she had meant to me during the roughest patches of life. She would fade in and out of sleep, exhausted. I've read research pointing increasingly towards emotions, memories, and even self-awareness in animals. I want to believe that Jordan knew how much I loved her as a companion. Jordan and her sister, Mimi, have been with us for almost as long as my wife and I have lived together. That means they have been through the good and bad with us. I thought about those times a lot over the last few days as Jordan needed more care and attention. For all my shortcomings, and they are many, the one thing I am certain I have done "right" for ...

When I am anxious, there are a few things that sometimes help decompress. These things do not work always, but most of the time they do. Because I don't like street noises, which are particularly painful, I seek out isolated park-like areas when I am not home. In Dallas earlier this year, I found several amazing park-like settings, include an enclosed mall with a duck pond and sculpture garden. Parks, arboretums, and gardens are followed closely by museums and galleries. The worst places for me are urban downtown areas. Even the park areas are often too close to the buildings and streets. If I am at home, I turn to cartoons and family entertainment, from Disney to Warner Brothers. I love films with a family pulling together in the end. How can you feel bad after a Pixar movie? Friends and family always win the day in a good movie. I do seal the windows, close the curtains, and drink herbal teas when I am at home and anxious. I do not want to think about where we live, which is much...

There are places that leave me anxious and stressed for days or even weeks. I can't explain it, but some settings leave me unable to gather my thoughts, senses, or emotions. I remain on "overload" and miserable until something several times more comforting can offset the anxiety. The main university campus makes me sick. Literally. I hate the campus and everything it represents to me. One visit of a few hours leaves me unable to focus and function properly for at least three days, and usually more. While the university is the most extreme example of a place making me sick, there are also businesses I can't enter or support. The nearby Target store is one I will not visit. It's a disgusting place with horrible employees. Maybe that will change, but I'm not going to go back to a store just to find out if they've mopped the floors. (I've noticed two stores in the same chain can be opposites. I love the Walmart in a nearby suburb, while the urban Walmart i...

I haven't felt well since Thursday, when I had to make a trip to the university campus. I dislike the university and everything it represents to me. The anxiety and stress of being on campus leave me unable to relax and think clearly for days at a time. My physical and emotional response to campus are too much to handle. I lose days of productivity. The reaction I have to campus raises a number of questions about what I should do or can do in the future. I know I have two more campus trips this year, at least. One for an eye appointment and one to speak to a class about writing. Neither trip will be easy and I anticipate losing two or three days after each trip to campus. Also, this week we had to confront the reality of student loans. It's a lot of debt, for a degree that causes my stomach to knot and head to ache when I think about the university. The diploma itself is somewhere downstairs. I never want to see it again. The university was a lousy experience that I'll be p...

Ari and members of ASAN deserve credit for trying to increase awareness of adults with autism and their unique needs. They are voices that should be heard. But, what of adults with autism spectrum disorders who disagree with some dominant ASAN positions? It often felt those were not only unwelcome, but disliked by ASAN members. Understand: I encourage people to learn about ASAN and know that it is serving an important purpose. If your personality is suited for it, I think ASAN would benefit from gaining more members who can work within an activist organization. I'm definitely more restrained in my mindset. I'm also not aligned with the dominant political views of ASAN members, which was uncomfortable. Over time, ASAN will evolve and I have great hope that it will develop into an organization with divergent views. Ideally, there will be a realization that we want services, supports, and tolerance. Not all autistic people share the same views on autism. At the Autism Society of A...

As I read articles on, interviews of, and blogs by the family members of people with special needs, I keep encountering apologies and guilt. This is particularly true of parents and spouses who feel guilty for wanting personal time. The sense of being trapped by a routine is a regular topic. Stop feeling guilty and, please, stop apologizing for wanting to have a hobby or desiring intellectual stimulation — or wanting time to do nothing at all. For parents, realize it is draining to deal with the normal needs of any child. From medical appointments to teacher-parent conferences, raising a child is one "event" after another. Even the first haircut can be traumatic. It is normal to need time away from parenting. Yes, it is more challenging to get time away if you have a special needs child, but you do need that time. My wife has several artistic / crafting hobbies, as well as an interest in genealogy. Her hobbies are important because they are a break from work, house renovation...

I spent the last two days working on two versions of my résumé: techie me and teacher me. I feel "incomplete" when I read one or the other, as if I'm not being honest about who I am. The technology résumé is modeled on samples I found online at two executive job sites. It does look nice and I am working on the wording. The special education résumé is going to take a bit more time to refine. Generally, a long curriculum vitae is the standard in higher education; trimming content to two pages was a challenge. As I edited these new career documents, I found minor errors in my full CV, errors that also existed in my online CV. It is frustrating, since my CV has been maintained since the mid 1990s. You would think a document that is updated every year wouldn't have any errors. Somehow, careless mistakes do slip past my eyes. The worst error was a misspelling of "university." The automatic spellcheck in Word should have caught that one...

After so many stories about autism and genetics in the news media, a parent asked me "that question" yet again: Would I want to be cured? What if my "autistic traits" could have been prevented? I have answered this multiple times, on this site and elsewhere. First, my life is better than that of the vast majority of humans currently living or at most points of known history. Plentiful food, good shelter, and a relatively easy existence within the American middle-class. Any complaints are the result of not considering my good fortune to be born at this time, within this culture. What parents are really asking is if their children are in some way unhappy, displeased, bitter, et cetera, for as a result of existing with autism or any other disability. I have no idea how someone else feels about being alive. None. People I can't imagine have any problems take their own lives. People I would imagine are miserable keep fighting for each extra day. Physically, who doesn...

I'm down to five days until my dissertation defense. Following the defense, I should have the doctorate. Grading should be done in the next day or two. Once I turn in final grades, I'm done teaching for a time. This means I really will be done with academia by Tuesday afternoon, shortly after lunch. Today, though, I was too exhausted to do much of anything. I watched television and listened to the radio. My energy level is much lower than it should be. I keep telling myself the degree was for a purpose. Right now, I'm hoping I can use it to give my creative writing some authority. If I ever do teach again, it will be a part-time post related to my creative interests. Once I have a clear mind, I'll offer some general thoughts. I am trying to sort through a great many thoughts and some emotions. It will be nice to be done.