Tuesday, May 29, 2012

Work and Connections

One of the strangest things I have been told is, "You're liked by coworkers."

Several supervisors have said this. Each was trying too hard to make a claim that didn't reflect my reality — and it was/is a claim that didn't concern me as much as it did them. It seemed important to the supervisor, oddly enough.

In all but one or two instances the statement was not true. Even if it were, I wouldn't care about being liked at work. Work is not a social space for me, or it becomes too overwhelming. Work needs to be apart from other things. I'd rather be respected and treated with some deference as an expert in my field. For some reason, though, my supervisors have considered it important to tell me I was/am liked.

No, I'm not liked. Tolerated, maybe. Accepted, to an extent. But I am not "liked" by my coworkers in any special way. "Liked" means something more to me than people getting along in a workplace or at school. Being collegial is enough, yet that doesn't even feel quite like what I have in a workplace.

I'm fairly certain they don't give me much thought on a daily basis. They are not my friends, only my coworkers. One or two coworkers are closer to me than others, but we do not socialize, email back and forth, or have some sort of "connections" that actively extend beyond the workplace.

People meet and date and form bonds at work. I don't want that, generally. I want to work. Please! Let me work and leave me alone unless there is something I must do.

The only exception to this view was when my wife and I owned a bookstore. For some reason, I believe a bookstore should be different. A bookstore is like a shared living room. Books should bring people together and be discussed. You know its a good bookstore when employees stick around to drink tea and play games. But, we all know what has happened to bookstores.

I miss the bookstore. It is one of only two workplaces I miss.

The other workplace I miss is the computing center at my undergraduate university. I miss being surrounded by all the cool technology — especially the library robots that would retrieve archived data. (For an example, see http://www.youtube.com/watch?v=d-eWDuEo-3Q) I'd peer through the windows and watch the robots scan the rows and rows of cartridges. Beautiful. It's hard to describe. A perfect dance, better than anything humans could do.

They were the perfect coworkers. The robots didn't like me, but I sure enjoyed them. No socializing, no demands to understand each other. Just doing what was needed to get the job done quickly and efficiently.

Monday, May 28, 2012

Final Thoughts on Finding Kansas

I finished reading Finding Kansas this weekend.

If you want to learn a bit more about the author, Aaron Likens, you should visit his websites:
Aaron's father warns readers that the essays within Finding Kansas might seem depressing and hopeless. The essays don't promise a better future for Aaron. As Aaron reminds us, real life isn't neatly packaged with closure at the end — and this book is merely a beginning of sorts, anyway.

I'm left feeling miserable about autism spectrum disorders and about my own autistic traits. It is probably because I'm already exhausted and frustrated and reading Finding Kansas while sorting out my own path in life was a bit much to tackle.

Finding Kansas is not a self-help book. It's not a traditional memoir. There's no story arch, and I'm not certain there is forward progress. Being tired, I start to see my own "treadmill" and feel trapped while readings the essays. Thankfully, I can sit with my cats and my wife and remind myself that we have made progress and life, while cyclical, isn't a treadmill. Progress is merely slow and often a challenge, but there is progress in most of our lives if we stop and remember where we have been.

I was frustrated by the book. I wanted Aaron to "snap out of it" and realize he was moving forward. Maybe he did, in the end. I'm not sure. He must have realized something positive, because his websites indicate he has turned his book into self-employment of sorts. He is a speaker, a radio guest, and more. He's moved forward without always realizing his own progress.

Progress isn't easy to see on the bad days. I spent the last two weeks feeling trapped. But, looking back I see what my wife and I have accomplished.

We've moved from California to Minnesota to Pennsylvania. We've moved from an apartment to a small house, to a bigger house, to a really great new home. We've both completed graduate degrees. My wife has an amazing job with a great company, something she wouldn't have found without moving from California. I have found a place I love almost as much as the California's Central Coast — again, something that wouldn't have happened without pursuing other goals.

Life moves ahead. Each step did move us forward, even if we are always afraid and always worried that something "bad" is going to happen. Aaron is paralyzed by this fear that tomorrow will be horrible. Looking back at my own life, tomorrow might be worse for a day or two, but the general trend is towards a better existence.

I'm not sure what I'll be doing in a year or two or three. Unlike Aaron, I'm not paralyzed by that. I imagine the future will be better — it must be better. Whatever it is, it will be something built on where we have been and what we have done. It will be a step forward or upward or something, but it will not be standing still. Even the cycles in life seem to spiral upwards, if you are patient.

Maybe Aaron will find a way to race, or something close enough. He's found a voice in writing that lets him reach large groups. He's done a great deal, even if he struggles to feel good about where he has been or where he might be going.

Aaron will move ahead; not knowing that future scares him a lot. It scares most of us.

A tangent…

Maybe animals are easier to "get" than people.

Aaron writes that the only "love" he knows for certain is that for his pets. Animals are special, and I love our family a lot. They are calming influences, and they make me smile. Even our little anxious Pumpkin means the world to me — I understand him and want him to be content. When I see the cats with my wife, I'm even happier. They love her, especially Pumpkin. I believe that's a tribute to how great my wife is; the two anxious "men" in her life feel safe and secure with her.

But even with our little kids, in that moving ahead there have been the bad days. We've lost great friends, beloved "kids" we will always miss. I think about those painful memories often, much as I'm sure Aaron likely does. Bad memories are hard to ignore. Even a happy moment with one cat might remind me of the loss of another. I have to remind myself our kids have had great lives. Even the short time Simba had with us was special and happy for her.

Moving ahead means loss. We will lose pets and people in life. And yet, other people (and pets) will enter our lives. We learn to better people with each connection formed, nurtured, and lost.

Love is caring enough to do something you wouldn't want to do, something you might even dread, for the sake of another. It often surprises me how much I'll do to help our cats. And sometimes, the worst part, the least selfish act, is to let someone or something go. Aaron realizes this when he loses a cat to kidney failure, something we've experienced.

Now, for Something Completely Different…

The next book on my reading list is Storm Front (The Dresden Files, Book 1). I'm not a fiction reader, normally, but after Finding Kansas I need something as far as possible from serious topics. I was going to turn to Nero Wolfe, but a Dresden novel is a nice homage to the genre. My mind needs a puzzle with a solution.

Friday, May 25, 2012

Finding Myself in Finding Kansas

When I was asked to read and comment on Finding Kansas: Living and Decoding Asperger's Syndrome I didn't expect the book to affect me much, if at all. I've read many autism memoirs and some seem more familiar than others. I can relate to the writings of Stephen Shore, for example, more than the works of John Elder Robison. Temple Grandin touches on experiences I understand, but her life was far more challenging than anything I've experienced.

The readers of Finding Kansas might understand what its like to live with an autism spectrum disorder. I'm not sure, because I keep trying to tell myself that I'm not like Aaron — even when I know much of what he writes is familiar.

The writings of Aaron Likens reflect emotions and social issues so familiar they hurt. His memories trigger my own negative memories, causing a fair amount of misery. At the same time, I cannot relate directly to some of his experiences and impulses. I recognize Aaron struggles with his emotions more than I do, but I am familiar with the frustrations he encounters.

Reading about emotions and fears I experience, there is a disappointment in myself. I know Aaron has struggled with what might be called "emotional paralysis" — he feels trapped by his Asperger's Syndrome. His metaphor of the paralyzed man who can walk, but only in Kansas, reminds me that I feel trapped by my mind and body much of the time. For Aaron, though, there are few peaceful places for his mind. Racing is the main one, and it seems games are another. Two or three conversations were relaxing and free.

My "Kansas" where I feel normal is more varied that Aaron's small Kansas. I feel relaxed near the ocean. I feel relaxed near water, in general, from streams to lakes. I feel at peace among gardens, even with people around to ignore. Museums are nice, too. These are nice places to be with my wife; she can take photos and I can sit and listen to the sounds of nature.

Writing at my desk or working on computer code, I'm also as close to relaxed as I can get. Okay, sometimes I get frustrated by a problem, but I like the learning and sense of accomplishment when a problem is solved. Computer code doing as it was intended is a nice thing.

Yet, I do understand how Aaron can feel trapped in workplaces and other social situations. I understand not connecting well with other people. I understand my wife; I don't understand most other people. Maybe understanding one or two people is good enough. But Aaron doesn't often have that one person around on whom he can rely. He wants to be understood; he wants someone, anyone to comprehend his pain and frustration with aspects of his autism. For him, Asperger's Syndrome is pain.

Like Aaron, I've written that I'd love to be "normal" at times. Yet, I also know my autistic traits might be linked to whatever talents I have. He likes to be in control, to have order in his life. Aaron has a great memory (a blessing and curse), and wants to be the best at whatever he does. I'm a driven perfectionist, easily frustrated by disorder and chaos.

Attachment to things? Yep. For Aaron, it can be a soda can. For me, it is a particular brand of pencil and type of spiral-bound notebook. Things are associated with memories, which is how Aaron connects to people. He links the things to people to other memories. I do the same. A lost thing is a lost memory, a lost connection to people and events.

Too many aspects of Aaron's writings are so familiar that I have taken many breaks while reading his essays. I'll read an essay or two and take a break. Sometimes, I've read the same essay a few times to analyze the situations and compare them to whatever experiences I've had.

Everything I read helps me analyze myself. I find myself in words (and code). As I read Aaron's works, I'm finding myself while he is Finding Kansas.

Wednesday, May 23, 2012

Memoirs and Community

A parent asked me if the memoirs of autistic individuals are useful for parents and educators. She also asked if memoirs might help her teen son understand himself better.

I've read many of the memoirs, studying how they are written and what they convey about the autistic thought process. But, I caution against searching for too many "universals" about autism within memoirs. There might be some, but searching for them can lead us to seeing patterns that don't mean anything. At the same time, because autism is a description based on observed traits, there are shared experiences in the memoirs.

My answer to this parent: yes, memoirs help. It is a way to know your child or student isn't alone. It is also a way for autistics to remind themselves that there are many, many of us on this planet. Working together, maybe we can help others appreciate what we offer society.

Literature exists in a community. Readers of particular genres have a way of finding each other and connecting, especially online. I've wondered if autism memoirs help us form communities, giving us a common language and ways to express ourselves. How many autistics now cite Temple Grandin to explain visual thinking? I've cited works by Stephen Shore, Dawn Prince-Hughes, and others to explain my experiences in education.

As blog visitors know, I'm currently reading
Finding Kansas: Living and Decoding Asperger's Syndrome and reflecting on the book as I read. Do I find helpful insights? Yes, but I also want to remind my readers that Aaron Likens is Aaron — he is not anyone else.

Some of the common issues among memoir authors:
  1. Alienation, isolation, and struggles to connect socially. Not every autistic seeks connections, but most memoir authors do and most seem to struggle with these connections.
  2. Ingrained memories, triggered by a variety of inputs. These memories seldom seem to bring happiness or joy, because even "good" memories lead to negative thoughts.
  3. Emotional confusion. That's the best phrase I have for the following: believing you do not to feel the same emotions as others, yet obviously being emotional about emotions.
  4. Sensory sensitivity. A basic trait among autistics, most of us are hyper-sensitive to some stimuli. For me, all senses seem to be overwhelmed at times. What is painful to one autistic might not bother another, though.
  5. Academic or professional frustration. Again, this varies widely, but most autistics struggle in the workplace because these are social settings.

A partial list of should include:

The collection of personal essays most important to me:
I am affected each time I read the essays collected into Aquamarine Blue 5. It is a collection every prospective college student with an ASD and his or her parents should read. The stories are different, but similar enough that you can see the commonalities.

Monday, May 21, 2012

Depression and Autism: More on Finding Kansas

Depression scares me. I can imagine nothing worse than a lack of hope. Page after page, Finding Kansas: Living and Decoding Asperger's Syndrome reminds the reader that many autistic teens and adults struggle with depression.

As I read Aaron Likens' essays, I'm keep returning to something mentioned early in the text by his father: depression. Aaron mentions his mother briefly in an essay, stating that she's had something of an emotional breakdown. At the same time, it is clear that Aaron recognizes his own depression and its illogical nature.

I tell families and individuals with autism spectrum disorders that they should work with the best clinicians they can locate (and, sadly, afford). When an ASD is accompanied by depression, anxiety disorders, or other conditions, a relationship with a medical professional with neuropsych knowledge is essential. Be careful, though — psychologists and other clinicians tend to develop biases and blinders based on their areas of expertise. Bad neurological care might be worse than no care.

Aaron's depression, which I struggle to grasp, has some elements I cannot avoid calling "narcissism." Not as in a celebration of self, but a negative narcissism: life, luck, fate, whatever it is, always goes against me. Aaron's view of life borders on "I'm doomed! My life is horrible and no one else could ever understand how horrible!" Maybe Aaron will mature, or maybe his neurological conditions will restrict his perspective for life.

His despair is part of his identity. That saddens me, a bit, but it also angers and frustrates me. "Get over it!" isn't an answer, I know, but it is what I feel as I read his essays. That's not fair, of course, since there are many things I cannot move beyond — but I try to move around those challenges and negative thoughts.

While traveling in Kenya with his father, Aaron recognizes that the lives of the people in the slums are difficult — more difficult than his life in the United States. He is aware that compared to others, his situation is not bad. He hasn't lost his family, having a supportive father in his life. He hasn't lacked for the basic needs, unlike the children he observed in Africa. Yet, he also knows he is unhappy, anxious, and depressed.

Readers of this blog might assume I'm unhappy or depressed, mainly because those things worth writing about tend to be the extremes in life. Most of life simply is; it is not depressing or thrilling. The joys of daily life are basic: purring cats, quiet dinners, walks through gardens, drives through the countryside. But, I write about the challenges and struggles more often than walks with my wife.

Aaron, however, doesn't allude to or mention the simple days. He is consumed by the negative: negative memories and negative anticipations. He dwells on the negative past, something many of us do, but he also dwells on the negative future — a future with minimal hopes and dreams. There's one dream (auto racing) and I'm not sure what else might motivate Aaron.

I do dwell on the negative, and like Aaron I am stuck reliving the negative daily. But, for whatever reason, I refuse to surrender to the negatives most days. As Aaron describes it, I see the photos and film of past events several times each day, but even with those memories I move forward. It is difficult to convey the difference, but it is important.

Why are many of the teens and adults I meet with ASDs paralyzed with anxiety and depression, often linked to their inability to "get around" the memories burned into their minds? What is it that allows me, even with a similar "stuck" or "trapped" sensory-based memory system, to move ahead much of the time?

Because there are some memories so negative, so ingrained, that I cannot function around them, I do understand the challenge. I cannot deal with some people, no matter what, because I have such negative memories and emotions associated with them. There are places and things I avoid, too. If my job mandates taking an action that I cannot accomplish, there's little I can do to overcome the anxiety and anger. Fortunately, I don't surrender to the negative — I plot a new path.

To avoid stressors, I've quit classes. I've quit jobs. That doesn't mean I "failed" — it means I had to find situations that were a better match to my physical and neurological limitations. Sure, it can be depressing to look back, but I'm not paralyzed by the past. Most people have had to change jobs or take new paths in life. My reasons might be different, but revising plans is part of life.

Aaron, and many of the autistics I've met, cannot revise plans without an emotional collapse.

In the essay "Las Vegas" Aaron ends his time as a driving instructor with a fall and concussion — in the classroom, unrelated to racing. For Aaron, this fall means he will never return to the racing school. Never. While most of us, myself included, would simply assume this was a freak accident and plan a return to the school, Aaron surrenders. He gives up, suddenly and without any possibility for revision.

When we first moved to Pennsylvania, I missed the exit to Cranberry Township and was stuck on the turnpike. I hate the turnpike and I hated missing the exit. I didn't return for two months. And I still despise that section of toll road. Driving to Cranberry still causes anxiety and fear that I'll miss the exit, but in my mind the benefits (retailers and restaurants I like) outweigh the memory of missing the exit. The memory is there, and it annoys me. I relive it with every drive. But, I'm not going to stop shopping at Costco for stuffed salmon and steaks.

In Minnesota, I fell many times and ended up on crutches twice. I slipped in the crosswalk going to the Mall of America to catch my train to campus, bruising ribs. I fell on campus, which was accompanied by someone calling me a "gimp" (very bad memory). Yet, I kept going to the MOA and, though there were many negative memories associated with the university, I did finish the degree. I finished with the help of many people, and I finished *for* those people, especially my wife and parents.

Because of depression, and this is only my opinion, Aaron cannot use his duty to others to pull himself through difficult times and bad memories. Depression is a serious medical condition. It is a neurological condition that is crippling; it is a disability. Reliving negative memories, including physically painful sensations, is hard to describe, and I know that autism is challenging enough.

I do feel sympathy for Aaron. I know people with depression and they struggle in ways I don't understand. They feel things I don't feel and are stuck in ways I'm not stuck.

Is Aaron's depression hereditary? Is depression related to some forms of autism? Are the treatments effective? Does treating the depression help with the autism symptoms? I don't know the answers, but after reading Aaron's essays it is clear that effective treatments for depression and anxiety are needed.

Aaron is not alone, but he feels that way. I'd estimate he is similar to at least half the adults with Asperger's Syndrome I've met. Curiously, they all feel alone and alienated. I suppose that's why support groups are common.

Because I am always dreaming, always planning, I quickly replace the bad "now" with a better "tomorrow / someday." For Aaron, he writes that "Tomorrow" is a scary, anxiety-inducing concept. Tomorrow is uncertain, but he's certain it will be bad. If I couldn't imagine a better future, I'd be unable to get out of bed. My belief is that my wife and family give me this strength. But what could help Aaron? I hope something, someone can help.

Saturday, May 19, 2012

Breaking Cycles

Skimming this blog, as well as my handwritten journals, I'm reminded that I seem to be stuck in a loop that I keep vowing to escape. For nearly a quarter century, the cycle has repeated. The number of blog and journal entries like this one is maddening.

I enjoy writing, so I declare to myself (in writing) that I am going to be a writer (1987, 90, 92, 96, 98, 2004, 06, 10, 11…). To subsidize writing, I turn to teaching — which many writers do. I convinced myself, and my wife certainly hoped, that teaching in a tech-based program at the university level would end the cycle. Maybe it will, maybe it won't. It's too early to know for certain. I was hired to launch a scientific and technical communication program. Unfortunately, science and technology are a small, tiny, minuscule, microscopic, aspect of what I am teaching.

NOTE: I don't mind teaching writing, and I study the history of philosophy (mainly the philosophers) as something of a hobby. But, what I want to teach, what I hope to teach, are the tools of writing — the technology. Also, there are complex issues outside the classroom that aren't the topic of this blog entry. But, I want to make clear that I would feel more balance teaching technology alongside other courses. I find technology offers something of a grounding for me: predictable and neatly organized.

I've "spiraled upwards" from teaching high school to community college to a private university. I liked the community college because I taught technology courses part-time, but we needed more income. It seemed logical to complete a graduate degree and teach full-time. The problem is, I pursued the "wrong" graduate degree.

I have consistently turned towards technology after each teaching job, because in tech I can work in relative isolation. It isn't the teaching I turn from, but the workplaces. Usually, I regret not having a more scientific or technical degree during this part of the cycle — I wonder if teaching outside humanities departments would be better for me. Would teaching programming or science be better? That's really what I want to teach even within the humanities: the technology of communication. With my degree, I should be able to teach in a technology-based field. I specialized in educational technology and online systems, but only English Departments interviewed me for full-time jobs as I completed my doctorate.

Consistently, as a predictable part of the cycle, I end up in technology outside education. I prefer to work among other techs. I'm not into video games or science fiction, and don't care about Star Wars vs. Star Trek debates, but I enjoy talking about hardware and software. Once in technology, which demands a lot of time and focus, I end up missing creative writing.

I'm a writing geek. That has many meanings. I love the tech of writing, from the history of language to the history of printing. I enjoy writing code. I'm a creative writer with a passion for the digital. I am fascinated by the design and distribution of words and meaning, as much as I am fascinated by the writing process. If I could balance writing and technology, that would be an ideal situation. Writing columns about technology for several years has helped, but that's not a full-time income.

To be a skilled programmer with a new toolset requires thousands of hours of study and practice. That time has to come from somewhere, which tends to be my creative writing time. I have dozens of software ideas and dozens of writing ideas. Often, the two overlap and I have ideas for software related to writing. When I was in high school, I coded a text editor that I kept improving throughout college. Writing meets programming. It would be great to have a team to tackle some of the ideas I have for applications.

Readers also know I have an entrepreneurial bent. For a writer, that's not bad: creative writing is self-employment and freelancing. When working for others becomes too frustrating, I seek a way to be my own boss. That hasn't produced the results I dream of, but it is while self-employed that I experience the most hope, despite the financial and emotional drain self-employment has been in our lives.

When I think about self-employment attempts, I feel deep regret and guilt for not succeeding and providing a secure future for my wife and our feline kids. I've written about this many times, too. We seem to have had the bad timing when it comes to business ideas: computers became commodities and thousands of small bookstores faded. Yet, I would rather be a failed entrepreneur than try to navigate most workplaces. Entrepreneurs believe, they must believe, they will have the right idea at the right time… eventually.

With the rise of ePubs and iBooks, my wife and I are now helping others prepare digital texts. Maybe this will be the right idea at the right time. Trust me, if you've read any books lately (even from major publishers) there is a need for editors and designers. I'd like to believe serious writers will pay to improve their final works.

I don't know what the future holds. Maybe I will get to develop tech courses and everything will be okay. Or, I'll move along the spiral into the predictable technology job.

I need to break this cycle.

Wednesday, May 16, 2012

Perseveration, Obsession: Notes on Finding Kansas

Aaron Likens dreams of being a top-tier professional race driver. Auto racing is the most important thing in his life, often at the cost of social connections. His focus also seems to impair his overall judgment in ways best understood by reading his memoir, Finding Kansas.

Many, maybe most, of the people I've met with autism spectrum diagnoses, have a tendency to perseverate. From simple repeating of sounds or movements for a few minutes to years focused on a topic, the nature of perseveration varies by individual. In some cases the focus drifts into obsession.

I found myself wanting to tell him, "Stop talking about racing. Young women don't care." Aaron's idea of a good day together is watching races. If someone else loves racing as much, then that might make sense, but it is painfully clear that "Emily" does not share Aaron's passion for racing.

The line between interest and obsession is important. A special interest can help you connect to some people; we all tend to appreciate shared interests. An obsession is disabling; instead of creating a bridge to others it creates an obstacle to interactions and understanding.

As I read Finding Kansas, I find myself getting annoyed by the mentions of auto racing. Even his essays on school end up mentioning racing. I am not passionate about any particular sport. Sports are not a "useful" part of life, though I'm fairly certain Aaron wouldn't care about the art, philosophy, or literature I enjoy.

Aaron calls his father to discuss racing. He tries to talk about racing to the young women he likes. He cares so much about racing, about being a driver, that he seems unable to accept that other career paths are more realistic. I cannot relate to this level of focus, but I've observed it often among autistic teens and young adults. Some of their career goals are so unrealistic it causes me some distress.

My college students are sometimes optimistic, but there's a difference: they change their minds and paths from week to week. They don't have their hearts and minds focused on anything, much less a career path set dating back to kindergarten with no flexibility.

While I've known I wanted be a creative writer since second grade or earlier, oddly enough I've never focused on writing as my "profession" or "day job" for some reason. I've always assumed my vocation would be one thing and writing another. Would I be a reporter? A scientist? A programmer? A professor? I've never had a clear plan, only whatever seemed like the best option at the moment. Unlike Aaron or most autistics I meet, my plans keep shifting while I search for a career I can embrace.

Auto racing consumes Aaron. He writes that he has no "Plan B" in life. It's either racing or nothing. And that's what I hear when I speak to groups.

What happens when Plan A is impossible? For Aaron, it seems depression and anxiety are a permanent state of being. Plan A is unlikely, at least at the top-tier of racing, yet Aaron can't accept anything else — at least not yet. Maybe in a few years he will see another path. Maybe there are alternatives that involve driving? I don't know.

If I had Aaron's focus on a career there would be one of two results: 1) major disappointment or 2) I'd persevere until I succeeded. In life, outcome number one is more likely. For individuals unable to adjust their plans, that disappointment can be devastating.

While I can relate to much of what Aaron's writings express, I cannot relate to the hyper-focus on one activity or goal. My problem is something of the opposite: a long list of things I'd love to try.

Monday, May 14, 2012

Work: Thoughts Inspired by Finding Kansas

I'm reading Aaron Likens' Finding Kansas while I am revising my eBook A Spectrum of Relationships. I mention my project because I was updating the section on relationships at work when I reread Aaron's essay "Work" and found myself reflecting on how difficult workplaces can be for people with autism spectrum disorders. I certainly find workplaces confusing.

Aaron's struggles in the workplace feel all-too-familiar. The gray areas are annoying. The interactions with others are exhausting. Honesty often backfires, and kind people are too often punished for doing what seems right.

Because we seek to understand people, asking questions about coworkers is how we sometimes try to navigate and anticipate how people might interact with us. The problem with seeking information is that it can seem like gossip. Maybe it is "gossip" to others, but autistics are simply trying to learn the rules others seem to know intuitively. I end up wanting to avoid people, which is better than asking questions.

Personally, I end up feeling lousy in most workplaces — not all, but most. The more I have to interact with people, the worse I feel. Strangely enough, I don't feel the same way when I'm teaching, but part of that is because I don't try to be my students' friend. (Despite excellent student evaluations, I always score lowest on the "relationship" questions.) Outside the classroom, trying to navigate the workplace remains a challenge.

Like Aaron, I know we're supposed to work to earn a living, but no amount of money is worth avoidable physical pain and emotional exhaustion. That's hard for some non-autistics to comprehend. It isn't that autistic adults don't understand the need to work, but the pain, exhaustion, and anxiety are too unbearable after a time in some workplaces.

Parents and educators have asked me how someone with a doctorate could struggle with work. Earning a degree was not easy, but it was easier than navigating many workplaces. As readers of this blog know, school was often miserable for me, so I'm not trying to minimize the challenges on campus.

For all the misery of being a student, education is not the "real world" — it can be easier to be a student than an employee. However, I've also discovered that it can be easier to be an employee (or entrepreneur) in private industry than to be a professor in some fields. For me, being self-employed is better than being a student or working for others. Dealing with other people is difficult in any setting.

Aaron Likens was a homeschool student, based on what I've read. I've wondered if homeschooling provides the social experiences we all need to navigate the world. School generally is a safer place to learn social skills than most other settings. I met my wife in school. I found my skills in school. And I also learned that I dislike dealing with most people while a student. A handful of teachers guided me, showing me a path… curiously one where I can work alone, in peace.

Instructors try to create an intellectually and emotionally safe space for students. Most of us, myself included, give students second chances. We tolerate a lot because we know our students are still maturing. Admittedly, I also give my non-traditional (adult) students more space, because the return to college can be a struggle. School, therefore, is more forgiving than most workplaces.

I'm not going to argue school is always safe or ideal. But, for most of us it is an easier environment to navigate than the workplace. Consider the ways in which school can align with an autistic's needs:

  • Schedules are predictable, from the general academic calendar to each course's calendar;
  • Instructors are expected to behave like parents, protective of all students;
  • Specialists are available, not only in K-12, but also within disability services at colleges; and
  • Laws (and tradition) offer more protection in educational settings than most workplaces.

Most workplaces are not predictable. Supervisors might mentor for a time, but they expect employees to be independent. Forget finding autism specialists in human resources. And, when things go wrong (they will go wrong), the Americans with Disabilities Act offers limited protections. "Autism" is a disability, but many of our traits can still lead to dismissal — or quitting.

Maybe people can't understand the autistic experience. Maybe we're too "odd" for other people to comprehend. Even those of us able to appear relatively normal are just "out of sync" enough to leave others feeling something isn't right. Our 50 to 500 millisecond delays in social processing leave others feeling anxious. In school, we are often alienated from classmates — but many of us do well enough academically to achieve varying degrees of success. In the workplace, that alienation can destroy careers.

Careers we can pursue in isolation might be ideal. It is little wonder many autistics are attracted to careers that have minimal interactions with other people. I can write, program, and design websites. These are tasks I can do alone. It is possible to work for clients and never meet them.

Maybe reading Aaron's thoughts about work will help parents, educators, and caregivers understand how many autistics feel when we think about workplaces. Most people complain about workplaces; for us those workplaces might be too much to tolerate. What seems "normal" to others might be too complex for someone with an ASD.

Friday, May 11, 2012

Finding Kansas - Reading Currently

This weekend I will try to finish reading Finding Kansas by Aaron Likens. I haven't posted many book reviews to The Autistic Me because I don't find that many autism-related books "fun reading" (and some autism books support ideas I don't wish to promote). I will post my thoughts as soon as I finish with the text. So far, it is interesting, without many of the elements I find annoying in other autism-related works.

Thursday, May 10, 2012

Queen Mimi 1993-2012

Queen Mimi, the longest-lived of our "kids" passed away in my arms at 8:25 on Tuesday, May 8, 2012.

As we were moving into our new house in Pennsylvania, it was obvious Mimi was getting tired. We moved her in a carrier with Misty Kitty, and the pair stayed next to each other over the first night in the house. Wednesday and Thursday, she remained in a little kitty bed in the corner of the "kids' room" of the new house. On Friday, we took her to the vet to see what might be wrong.

She had lost some weight. Lab works showed her kidneys and heart were fine, but she had something wrong with her liver. The vet hoped it was nothing more serious than stress, and he seemed hopeful that if she ate enough, the symptoms might go away. If it was only a result of stress, food and water would return her to normal. The vet kept her over the weekend, to feed and hydrate her.

The lab work improved significantly, but Mimi seemed tired when Susan brought her home on Monday afternoon. By nightfall, we knew she wasn't going to be able to survive another few days. She was too weak to walk to the food dish and struggled to drink water.

For the first time in years, she didn't give us her little "Mimi kisses" on the cheek or chin. She didn't want to be held; it seemed to hurt if we held her.

Tuesday morning, it was raining lightly after a long night of storms. During the night, Mimi had somehow walked, taking many breaks we assume, from the kids' room to a spot near Susan's side of the bed. Mimi wanted to be with us, right until the end. Susan brought in Mimi's cat bed, some water, dry food, and a small litter box.

I thought about placing Mimi on the bed with us, but we worried that she might try to jump and hurt herself in the weakened state. Normally, Mimi would have jumped onto the bed and kissed us goodnight.

We knew Tuesday was Mimi's last day, but we had no idea it would be so horrible. We were going to call the vet at 9. A little after 8, while Susan was getting ready for the lousy day ahead, Mimi started coughing and wheezing. I ran to her side and sat with her. She spit up liquid and was struggling to breathe. I picked her up, out of the cat bed, and carried her back to the kids' room.

I hoped to calm her and relax her long enough to get her to the vet. I'm not sure if she died in my arms, technically, or when I finally rested her exhausted body next to me. Her body spasmed as the muscles moved, but there was no heartbeat or breathing. The worst part was the final cries of pain that morning. I wanted her to be okay and it seemed like we failed her. Mimi didn't deserve those horrible last few days.

As she faded, I kissed her head and told her I was sorry, so very sorry.

Most likely, she died of cancer.

She went from jumping up to our bed to being unable to walk in less than a week. It was heartbreaking.

We wrapped her in a towel, called the vet, and took our little girl on one last journey. I held her, carefully, for some reason still wanting her to be comfortable. I know she was dead, but she was queen of our house and deserved to be cradled with love.

Last August, we lost J.C. Kitty — a special cat, quick to purr and extremely loving. It was a horrible loss, because it happened right as we were moving to PA. Susan had just left, returning to Minneapolis, and JC had endured oral surgery. We thought he might be okay, but he wasn't. The cancer had spread and he lost the fight.

Some of the thoughts on J.C. were in these posts:




I've also written about the losses of Jordan and Fido on this blog. Since leaving California, we've now lost our beloved girls, Fido, and J.C. Kitty. Yes, we at one time were caring for eight cats. Of the "original pride" there are now three: Alex, Mutt, and Pumpkin.

Misty Kitty joined the family at a time when we needed her, right after J.C. lost his battle with cancer. She liked Mimi and gets along well with Alex and Mutt. They needed a little spark in the house.

Mimi and Jordan will always have a special place in my heart. True, we love each and every "kid" in our lives, but the girls were a pair: they loved each other, and loved us. We have many photos of the girls together, often with Alex nearby or between them. I'm not sure how Alex feels, but he was definitely depressed after Jordan died.

Without Mimi and Jordan, it is like a stage of my life has ended. Mimi was with us for more than 18 years; that's a huge part of our lives spent with the girls.

Each of the last three moves has now been followed by a cat passing away. Fido's cancer was diagnosed as we were moving into our Minneapolis home. J.C. died as we were moving into our first PA home. And now, Mimi passes away after only a few nights in our new house. I know it is a meaningless pattern, a coincidence and nothing more, but it is as if each new start comes with a price. Silly and foolish of my brain to think such things, but I feel lousy right now. I want my Mimi kisses before going to bed… and instead there is silence.

Wednesday, May 2, 2012

New House

This is the new house, where we will be living as of tonight.

Moving Day

Today, my wife and I will be moving in to our new house. This means we will be without an Internet connection for two or three days, so I won't be online until the weekend or early next week. Also, moving doesn't leave much time to be online for the next week or so.

To make matters more complicated, I have a medical procedure in the middle of the day. I started this morning packing boxes, trying to get what I can done before the out-patient procedure. You never know how long it will take to recover from the anesthesia and general discomfort when you have any medial procedure.

The notion of being off-line, disconnected from readers and friends, is a little frustrating. What does that say about our culture and our strange need to be connected at all times? It's as if we don't exist without a network connection.

Last year, I tried to have at least one "tech free" day a week. This didn't mean no phone, but it meant no sitting at a computer and working. Even my "tech free" was something closer to "tech-light" instead of entirely free. I compulsively read online news, various blogs, and forums like Slashdot. Only when my wife and I leave the house do I really find myself tech free.

Anyway, I'll be returning next week. I keep promising that my schedule of a new post each week, to each of our blogs, will be revived. Life does keep getting in the way, but a new house and stable routine should help.

As I prepare to spend time off-line, I'm reminded of how interconnected the topics about which I write can be. We imagine technology solving problems, improving our lives, but at the same time these great inventions can cause alienation, economic disruption, and other unintended consequences. Imagine all the electricity networks require, the plastics, the chemicals used to make chips, and so forth. A "good thing" can have a lot of costs, many of them hidden from our daily thoughts.

I am compiling a long list of blogging ideas as we prepare to move for this second time in under a year. If you have any topics you'd like me to address, feel free to post those, too!