Wednesday, January 23, 2013

Autism neurodiversity: Who speaks for the severely autistic?

I suggest reading this, even if you disagree. Especially if you disagree.

Autism neurodiversity: Does facilitated communication work, and who speaks for the severely autistic? - Slate Magazine

For those unfamiliar with this blog, I do not consider myself a "neurodiverity" champion. I am not going to claim that "autism" is one thing or that all autistics have similar needs — any more than any group of people can be generalized. I find there are fewer commonalities among autistics than other groups of individuals with physical or neurological challenges.

I understand and appreciate the motives of the Autistic Self-Advocacy Network, the Autism Network International, and other groups organized by and for autistic individuals. I also understand that parents with children dealing with serious physical and cognitive challenges feel limited connection to the "high-functioning" stories of success.

My wife and mother both know my physical and neurological limitations well. It was my mother who guided me through years of physical therapy. It is my wife who has helped me deal with various medical issues over the last two decades. Migraines, seizures, palsy, and so on. Yet, I would never, never consider my situation all that bad. Inconvenient? Yes. Severely disabled? No.

Intellectually, I don't consider myself disabled at all, though neuro-psychological exams have identified strengths and severe weaknesses. The simple truth is that I am academically skilled and know how to take mosts tests. I earned perfect grades in my master's program and nearly-perfect grades in my doctoral program. I was an honors student in high school and in college.

So, my limitations are not intellectual. I can care for myself (though my wife might argue that point), I care for the cats when alone with them, and I function fairly well on a daily basis.

My life is not the same as that of the adults and children I have met in residential programs. Their experiences are not mine — they need far more help and support. Their families also need more help and support than I now require. (Not to say I never needed medical care or special services, but not a lifetime of 24-hour care.)

Most people don't recognize me as "autistic" or as having "autistic traits."

It is when I am tired; it is when I have had a seizure; it is when I am subjected to a sound, bright light, or other sensory experience; it is when things "go wrong" that I am most obviously "not normal" and cannot manage to deal with the world around me. In those moments, it is obvious something about me is different.

So, when I read the stories of parents with "severely impaired" children, I do understand that their needs and experiences are unlike my own. But, that doesn't make their stories or my stories "better" and more important to address.

Because I don't consider "autism" one thing, I don't pretend to represent any one group. My experiences are mine alone. The best thing we can do is listen to parents, individuals, and experts. We need to hear and appreciate the various experiences of these people. We need to ask about each case and consider what we can and should do for the person with special needs as an individual.

Last week, I read a blog post suggesting that the "high/low-fucntioning" and the "mildly/severely-impaired" modifiers are unhelpful. I am not so certain. Maybe there are better terms, but I also understand that there is a scale of physical and cognitive impairment. I don't know what the best identifiers are, but the father I met with a son in a group home knows that his son is not like me. My needs and his son's needs differ significantly.

Reading the article in Slate, I dislike some of the author's statements. Yet, I also appreciate her views do reflect a sense that many self-advocates are unintentionally creating tensions.

Dialogue is what we need, but it seems to be a constant "screaming match" online. That's a shame.

Friday, January 18, 2013

Autism Society of Pittsburgh, ASA Conference

Having moved from Minnesota to Pennsylvania in 2011, I have not been directly involved in autism advocacy and education for the last 18 months. I was busy enough moving and navigating my new workplace that I decided I was busy enough without volunteering to help others. Now that we are settling comfortably in Western PA and the job is now focused entirely on research (no teaching this semester), I want to do more.

On January 16, I had a nice lunch with Dan Torisky and Heidi Hess of the Autism Society of Pittsburgh (http://www.autismsocietypgh.org). Mr. Torisky is the president of the Autism Society chapter (or "affiliate") and Ms. Hess is the coordinator of community outreach. I look forward to working with the local chapter, because I respect the Autism Society of America (http://www.autism-society.org) and the work it supports.

The ASA annual conference is going to be hosted by Pittsburgh this summer, July 10-13, 2013. I look forward to helping the local chapter host this event.

I encourage parents, caregivers, educators, and support specialists to join the Autism Society chapters in their states and cities. ASA and its affiliates try to keep a local focus, something other organizations do not do well or entirely ignore.

As readers know, I am uncertain of what might be ahead for me. I do not know if I will be teaching next academic year, working in private industry, or finding some other adventure. (We hear the economy is improving; let us hope it truly is.) Yet, finding the regional Autism Society means that I will have supportive colleagues and hopefully new friends in Western PA. Having a social network and purpose beyond "work" reduces my stress significantly.

I also continue working with organizations in Minnesota, and elsewhere, via email and video-conferencing. Technology has made it possible to be engaged nationally without traveling. Admittedly, I love that I can stay at home and answer questions — but there is still something special about interacting with students, parents, and educators in person. If you are in Western Pennsylvania, Eastern Ohio, West Virginia, or parts of New York, I am willing to meet with local groups and attend regional events.

Again, I thank Mr. Torisky and Ms. Hess for welcoming me into the local autism support community.

Thursday, January 17, 2013

Follow-up Post: Any To-Do List Progress?

In an earlier post, I listed some of the goals for my weekend. Now, I offer the reality check.

My goals for this weekend included:

  • Finish unpacking our music collection. (No)
  • Verify technical books are in my database. (Yes)
  • Compose three to five blog posts. (Yes)
  • Edit a client project. (Slow progress, incomplete)
  • Update at least one Web page. (Some progress)
  • Work on my two research projects. (Very little progress)

The music collection wasn't a priority. I didn't manage to put any discs onto the shelves. It is a task I need to get done, since we need the CDs off the floor, but for now it will be a task I do when I need a break from the computer screens.

Verifying my inventory of tech books was important because I'm starting to program again. I can't always remember which books I own, especially since there are new editions of tech books almost annually. Actually, we have so many books on so many topics, I am updating my database to include most of the books we own on some topics. My wife has a database of her books, too; we need to cross-reference our lists. Admittedly, I have purchased two used copies of the same book at least once that I can recall. One of my goals is to keep better track of what I have read and what my opinions were of the books.

At least three blog posts are stored as drafts. I have another dozen started. I will try to have a total of five ready for release this week. For a few years now, my goal has been one post per week to each of five blogs. We've added a "fun" blog recently, but that doesn't need a schedule. The good news is, this post counts!

Editing a screenplay for a client is taking more time than anticipated. I made some silly typographical errors, which I need to correct. I also made some formatting and stylistic errors. The editing is incomplete, as of Sunday afternoon, but I plan to be working on the edits tonight. Still, it will be incomplete.

The Web page I hoped to complete this weekend became a team project. It is a bibliography, which we are linking to Amazon so readers can buy copies of the books we have consulted. I ended up passing the text files to my wife and she is going to add the Amazon code. She's much faster at the "copy-paste" routine than I am — and she makes fewer mistakes alphabetizing books!

Finally, the two research projects received only a few minutes of my time. That's okay, but I want to get the projects organized and ready for outlining. I hope to have the article and the book chapter outlined by the end of this month.

Not Listed, But Done

Fixed a website issue. I did get some work done on a website I administer for a non-profit organization, but it wasn't the client project I must complete. The website issues always fascinate me, so it was easy to focus and find the problems.

Made backups of my teaching data. Since I am not teaching this semester, it was a chance to do what I normally do each summer: archive the data and organize the files on my laptop. I'll finish the housecleaning in spare moments.

Saturday, January 12, 2013

Needing to Do More

I'm trying to get some projects completed, and parts of others. As readers know, the endless to-do list is something both my wife and I maintain. I'm certain I don't add everything I wish to accomplish to the list(s) we maintain — I'd end up spending the day adding to lists, not working on them.

My goals for this weekend include:

  • Finish unpacking our music collection.
  • Verify technical books are in my database.
  • Compose three to five blog posts.
  • Edit a client project.
  • Update at least one Web page.
  • Work on my two research projects.

The full list is much longer, but I am trying to be somewhat realistic. I might accomplish some of my goals, but most likely I will complete portions of some of them. There will be some CDs still in piles, some books unverified, and I doubt the blog posts will be backlogged to my satisfaction. Despite my best efforts, I doubt I will complete this editing pass through the client project, too.

Is it a lack of focus or a lack of time? Or, do I have too many goals?

I used to take at least one tech-free day. Those days were not breaks, since there are hundreds of things to do without computers.

Other people seem to have lots of "downtime" to play video games, watch TV, and enjoy other distractions. We all need downtime, and I do take time off, but I often feel guilty after taking a break. I need to remind myself that I need time off-task to do my work better. Still, it feels like other people "do less" because they don't have a compulsion to always be working towards something. I want to do more than one person can do.

Time off is essential. What is it when your "time off" is still spent trying to be productive?

Back to my to-do list….

Monday, January 7, 2013

The Fiction I Enjoy

We celebrated the start of our four-day holiday weekend by watching three adaptations of Jane Austen novels. These were the "good" versions, written by Andrew Davies and produced by BBC with the "old" A&E that cared about Art as much as Entertainment.

Pride and Prejudice remains my favorite Austen work, and the Davies script is a reasonably loyal adaptation. I have to state that I like the dialogue of Persuasion, and Emma is a masterpiece — so self-aware that it can border on being something of an Austen parody of Austen. (I do not like Mansfield Park and cannot recall Northanger Abbey, I admit to some shame.)

A few days ago someone mentioned that I must love science fiction.

No. I don't love science fiction. I like it, but I do not own many works of science fiction and my entertainment choices are more likely to be cartoons and romantic comedies.

I enjoyed the first Star Wars movies, but I'm not an obsessed fan; we don't even own copies of the films, unless my wife still has VHS tapes somewhere. We watch Doctor Who, but I can't recite trivia from the series. I don't believe we've watched the new Batman movies, and I know we didn't watch the last two X-Men films.

My favorite films include Pleasantville, Notting Hill, Casablanca, and The Majestic. During the Christmas holiday, I watched two versions of Les Miserables, including a wonderful 1934 version in French. It was brilliant, much better than the English musical that is a shadow of the novel.

Musicals are great, with some notable exceptions the popular tastes. I do not like Les Miserables nor do I like Cats. Rent is painful. I like the classic musicals, from the Golden Age of Broadway. Give me Showboat and West Side Story. I do appreciate Phantom of the Opera, and Chess has great music, though it is a relic of its time. I've seen Bye Bye Birdie several times, and West Side Story at least twice. Film versions of musicals are okay, but they lack the energy of a live performance. At the same time, the old "big production" musicals can be a lot of fun. The 1954 Seven Brides for Seven Brothers and the Streisand 1969 Hello, Dolly! are personal favorites — though my wife would rather not be asked to watch these with me.

My television series tastes are limited. I prefer police procedurals and courtroom dramas. I dislike most comedies, with the notable exception of Modern Family. I believe I used to enjoy Cheers, Frazier, and M*A*S*H. Who doesn't consider M*A*S*H one of the best shows of all time? It was brilliant, on many levels.

I like cartoons, from Disney to Warner and everything between. One of the benefits of my age is that the 1970s and 80s were a Golden Age for Saturday Morning cartoons and reruns of all the great cartoons of the past. I remember Rocky and Bullwinkle in the mornings and Scooby-Doo in the afternoons. On weekends, we had Bugs Bunny and the Super Friends. What a great time to be a child.

Yet, people seem to assume I must prefer hobbits and droids to romance, musicals, and cartoons.

Maybe there are some singing hobbits in love, with an animated dragon accompanying them?

Wednesday, January 2, 2013

Cold. Intimidating. Angry. Scary. Autistic.

In the last two weeks, I had to deal with the consequences of misperceptions and assumptions about me — and autism. My last major "public interaction" of 2012 also included a mention of my perceived personality, and that mention still annoys me several days later.

I am reminded of this excellent blog post on Musings of an Aspie:
You Scare Me
October 10, 2010
http://musingsofanaspie.com/2012/10/10/you-scare-me/ 
Last summer, my husband and I had some new friends over for lunch. They brought along their two young boys. Toward the end of the meal, the 5-year-old, who was sitting next to me, looked at me and said, "You scare me."
I have been told, far too many times, that I make people uncomfortable. I have been told I am cold, intimidating, angry, and scary. Coworkers, I have been informed, are afraid of me. Afraid of me, despite my palsy, my limp, and my occasional use of a cane.

Please, read the full post on Musings of an Aspie and try to understand what is being expressed. I want to quote a long portion and then explore how it relates to my last few weeks — and my last few years, unfortunately.
More than once I've had a professor pause during a lecture to ask me if I had a question. One day, curious about why this happened so often, I finally said, "No, why?"

"Because you're frowning," the professor replied.

Surprised at his reply, I blurted out, "I'm not frowning. This is my concentrating face."

The rest of the class laughed, but the question was right up there with you scare me in how deeply it unsettled me.

Obviously I was projecting something different from what I was experiencing internally. There I was sitting in calculus class day after day, looking confused, but never asking any questions. This made my professor so uncomfortable that he stopped in the middle of his lecture to ask me what my problem was. I wonder if he even believed me when I told him I wasn't confused.

I wonder how often people think I'm being deceitful because my verbal and nonverbal communication doesn't match.

This is a problem that feels too pervasive to fix. I'm literally projecting an expression of some sort during my every waking moment. There's no way I could–or would even want to–pay attention to what that expression is all the time.
— from http://musingsofanaspie.com/2012/10/10/you-scare-me/
I've endured a great many suggestions from "superiors" that others are afraid of me. Yes, in those words. To be told others are afraid of you, distrust you, and believe you are in some way mentally unstable is deeply troubling. Trying to explain that I struggle with my vocal tone (and volume) and my facial expressions was insufficient to address the complaints that I made others uncomfortable.

Since 2004, I have been teaching at the university level. My students, at least the majority, didn't appear to share this apprehension of me — but I cannot be certain. Student evaluations and their personal notes to me are the only information from which I can draw conclusions. The one or two students expressing negative views tended to have other conflicts. I doubt most university students pay much attention to their professors beyond what is required to earn a decent grade.

Yet, my professors and my colleagues have said I make them uneasy. One professor even asked that I be removed from her course; I completed my work online and endured a formal investigation of my supposedly threatening behaviors. It was a miserable experience for me and my wife. Only the kindness and understanding of a university dean helped us navigate this horrible minefield of professorial ignorance and insensitivity. Silly me, getting a migraine in her classroom and having a seizure. How thoughtless of me.

I've written at length about the miserable experience and it does haunt me. It will, as many other experiences do, replay in my mind for the remainder of my life.

Maybe I'm wrong, but I assume most people do not understand how dehumanizing it is to be told you are scary. If I were equipped with a deep voice and imposing stature, I might accept that people are intimidated. If I had a tendency to destroy objects and punch people, I might understand the assumptions about me — because they'd be supported by actions.

Instead, the most anyone could claim is that I have a "strange tone" and "shake" at times. I seem "angry" because I don't smile enough. I am "unhappy" because I give voice to my concerns and my suggestions. If you do not want my opinions, do not ask me questions or ask for my ideas.

I am distrusted because I don't like secrets or office politics — and dare to say that office politics are childish and disruptive. I do not know the limits of petty feuds and nonsensical rumors. I hate the fact that people talk about each other, instead of asking questions directly and in person. I despise how people behave in the workplace. That is stating it mildly.

A supervisor said I need to appear "happier" to make people feel better. My wife has suggested such "workplace advice" be included in my revised edition of A Spectrum of Relationships because other autistic adults will encounter similar situations. People like "happy" and "charming" people; not being skilled at social graces is a severe obstacle to success in some workplaces.

With the recent shootings in Newtown, Connecticut, I've heard media personalities discussing autism and violence. The Sandy Hook incident has once again allowed ignorant people to associate Autism Spectrum Disorders with murder. That isn't going to help me convince colleagues they are mistaken to assume I am a threat. Professors are human, falling victim to misguided stereotypes of various disabilities.

Many autistic individuals have found refuge in academia. I have not. It might be my fields of study, or it might be that I simply stumbled into a few people I could not educate about autism. I have spent many, many hours over the last eight years trying to understand why a career path I thought would offer acceptance has instead led me to constantly doubt myself and my place in the world.

I've applied for other teaching posts, as I am openly on the job market for the next academic year, but I also fear that I might not find a setting that tolerates me as I am — and appreciates that I am willing to teach others about my challenges and experiences. It is not as if I hide that I am "different" from my colleagues, or even my students. That I do speak publicly should indicate that I'm more than willing to discuss why and how I might need some assistance at times.

While in the midst of pondering my future, trying to gather myself during the Winter break, someone commented on my lack of a smile and my rather unhappy nature. I was asked why I wasn't smiling as a financial matter was being settled. My reply, probably taken as rudeness, was that "Things are finally done." In other words, why should I be "happy" because a matter was being settled properly? I don't get excited by things being done properly and professionally — that should be normal.

Normal doesn't thrill me. I am excited when someone goes above and beyond what is expected. I'm not going to smile and do a "happy dance" simply because things are as they should be.

No, I don't smile often. I do laugh and smile with my cats. I laugh at some cute moments in books and movies, but not as often as others might. I prefer not to be photographed, because I realize I don't look "happy" in most pictures. When I do smile, it looks fake even to me, no matter how genuine the moment.

I'm sick and tired of people demanding that I be charming. I am angry and frustrated with claims that I am angry and scary. How ironic is that?

The only person who seems to understand me is my wife. We are here, alone in Pennsylvania, trying to digest and interpret the ignorance and intolerance I have encountered over the last many years. Maybe encouraging my readers to visit other similar blogs and to reflect on the autistic experience will help someone, somewhere be a bit more tolerant in the future.

I'll be writing about this more in the future. It bothers me that people trust the smiling faces of disingenuous charmers while they distrust a set of people predisposed to blunt honesty and a lack of deceit. More than once, when telling the truth to the best of my knowledge, I have been accused of deception. When I have stated a truthful opinion, I have been accused of engaging in politics.

A friend told me people don't want Sherlock Holmes or Mr. Spock as coworkers. They want outgoing and reassuring friends, first and foremost, in the workplace. Being a good worker is less important than others enjoying your presence. I have little reason to doubt his insights, which I have observed in several different settings. Friendships decide more than skills do in many workplaces.

If I am intimidating, tough. I'm done with trying to make others comfortable when so few people are willing to listen and appreciate my perspective. People unwilling to ask questions or accept offers of explanation are unworthy of my time and energy — I've wasted too many years dealing with intolerance, ignorance, cruelty.