Monday, February 25, 2013

Our Quiet Life

A recent comment on the blog noted how fortunate I am to have my best friend as my wife. We spend a lot of time together, which isn't easy for some couples. My wife and I work from home most of the time, so we have lunch together and we take turns tending to our cats' needs. For days at a stretch, we might be the only other people we see face-to-face.

My wife is an introvert. She likes to sit on the couch by the fireplace, a cat in her lap while she reads a book. During the summer, she wants to tend a garden and take photos of the parks we visit.

The reason we live well together is that neither of us has a compulsion to visit large, crowded cities or places. We are both content to live in a semi-rural area that meets our basic needs. There are some good restaurants, easy access to shopping, and several nice parks.

I tend to need out of the house more often than my wife, but my destinations are simple: bookstores, parks, and a few favorite restaurants. She indulges my restaurant breaks, eating out more often than we should, but that might be the one extravagance of our lives — and even the restaurants we like are in the "casual dining" category with few meals over $40 for two people.

We like to read, do some basic crafts, and read some more. If there is anything we could use, it would be more bookcases for our books.

The calm, quiet existence we share is ideal for me. It works well for both of us.

Thursday, February 21, 2013

Stuck in Neutral

I have a draft book chapter due March 15. It is an important project, whether I remain in academia or not, but I am finding it difficult to complete the draft to my liking. Some call this being "stuck in neutral" because little progress is made no matter how much I try to accomplish on this project.

The project is outlined, I know what I am trying to communicate, and it needs to be done quickly so my wife can review it and I can submit a good draft.

The problem is that I have accepted that my academic career seems to be ending, at least the full-time, tenure-track career I had hoped to have. Writing this book chapter, then, must be motivated by the hope that it will influence others, encouraging faculty to consider students with special needs.

Consider the irony: I'm writing to faculty about inclusionary designs, while I never felt "included" within academia.

It is hard to write about classroom designs and the challenges students with special needs encounter when I had to engage in battles just to be tolerated. Forget acceptance or inclusion, I didn't get past the tolerance stage in many instances.

So, as I write my chapter I get frustrated. I get upset. I feel like I'm fighting for a lost cause. Yes, this is the result of bad experiences, but so many families and students come to me with similar stories that I feel emotionally drained. The educational system doesn't really like "difference" even when it might claim otherwise.

Accommodation is something "tacked on" after course materials are prepared. Inclusion requires designing courses and spaces that don't require special accommodation. When you accommodate, you still view someone as different, an outsider requiring special effort.

I recall watching an entire class help move chairs and tables to make way for a wheelchair. That's accommodation, not inclusion. To include the student in a wheelchair, the class would have already had wider rows and open spaces. Instead, the student had to watch as this special effort was undertaken. Even if it was well intentioned, it comes across as, "Look at what we are doing for you. See? We tolerate you here."

I know that's not always a fair interpretation, but too often I felt people were (barely) tolerating me. Then, when it became clear that some did not tolerate me, that reinforced the belief accommodations were superficial efforts.

Yes, I need to write and edit this chapter. I need to make my statement. Yet, I find it hard to write knowing that I was on the outside too often even after I became a professor. Worse, I was told that I was the cause of my own alienation — because I didn't adapt well. So, in the end, some people want the disabled to accommodate the desires of "normal" people.

The last few years have made me bitter, and that's leaving me stuck in neutral.

There are great schools, colleges, and universities out there where my thoughts might be read and appreciated. I simply need to remind myself that my book chapter might help those places.

Monday, February 18, 2013

Extroversion, Collaboration, and Neurological Differences

I am cross-posting this blog because it overlaps issues important to the autism community, rhetoric instructors, and those teaching with technology. It is a personal issue, for me, and one that reminds me how apart from "normal" society and dominant pedagogies I am as someone with a neurological challenge.

The following contains generalities, and there are always exceptions to generalities. But, my experiences and those of adults with cognitive differences I have interviewed do support my claims.

Contrary to what some might assume, many teachers in the humanities (though certainly not all) are extroverts. I've found the opposite is true in most science and technology fields, with the introverts outnumbering the extroverts. Statistically, there are personality traits that dominate various disciplines. There are political views that dominate, too. There are scholarly studies of the political views of professors (Gross and Simmons, 2007) and personality types within disciplines.

In rhetoric and many English departments, the rogues, the iconoclasts, are the rugged individualists with a tendency towards introversion. The norm is an emphasis on group work and buzzwords like "community." There is, as Gross and Simmons found (among others), a bias towards left-leaning political theories and outspoken activism. Good luck being an introverted Libertarian with neurological differences.

You might imagine the faculty in English or rhetoric want to sit and read in nice, quiet spaces alone. But, if you read the list of topics and conferences, these are a social and political group of professors. I found that wanting to be alone, focused on my work, was not how rhetoric or English departments function: they are social spaces with a lot of idealism. Compared to business or engineering, I've been in an academic sphere that fails to align with my personality — let alone my political ideals.

We claim to value various learning styles, from auditory to visual, but our practices don't value different personality and neurological traits. We seem to appreciate that some people learn from lectures and others learn from kinetic interactions, but we dismiss the preference — even the need — for some students to work alone or in pairs instead of larger collaborative teams.

Sadly, how socially skilled you are is statistically significant when predicting college success. For more than one individual I've met with autism or other cognitive differences, the social aspects of school proved impossible to navigate. Although there is a stereotype of "awkward genius" the reality is that even most professors prefer charming outgoing students.
The Utility of Career and Personality Assessment in Predicting Academic Progress
Abstract

We examined the ability of four career and personality assessment inventories to predict students' first-year college performance and persistence. Among our sample of 677 college freshmen who enrolled in a freshman orientation course, subscales from the Myers-Briggs Type Indicator, Strong Interest Inventory, and Social Skills Inventory uniquely predicted first-year college GPA, and subscales from these three instruments and the Career Factors Inventory uniquely contributed to the prediction of freshman-to-sophomore persistence, each after controlling for ACT/SAT scores.
— from http://jca.sagepub.com/content/10/1/3.short
The following essay, published in The Atlantic, indicates how biased some English writing instructors are.
Introverted Kids Need to Learn to Speak Up at SchoolJessica Lahey is an English, Latin, and writing teacher
FEB 7 2013

In the end, I have decided to retain my class participation requirement. As a teacher, it is my job to teach grammar, vocabulary, and literature, but I must also teach my students how to succeed in the world we live in -- a world where most people won't stop talking. If anything, I feel even more strongly that my introverted students must learn how to self-advocate by communicating with parents, educators, and the world at large.

Dr. Kendall Hoyt -- introvert, assistant professor of medicine at Dartmouth Medical School -- agrees. "You don't get a pass for your personality type. I understand that social anxiety is a real thing - I am an introvert, and my mother used to actually faint if she had to do public speaking - but part of my job as a teacher is to teach people how to articulate and be heard."

Hoyt applies this same philosophy to her own children, both introverts. She and her babysitter have constructed elaborate social scavenger hunts for the children, games that require them to approach strangers, look them in the eye, and ask for whatever the game requires - directions, information, or signatures.

When I asked her why she puts so much effort into her children's ability to communicate with strangers, she answered, "In order to be effective in this world, you must be able to communicate. If you can't speak up for yourself, if you can't muster the courage to tell the person you love that you love them, if you can't advocate for your own safety, the world will be a very intimidating and frightening place. I don't want my kids to be intimidated by the world."

When a parent tells me that his or her child is simply not capable of communicating educational and emotional needs, I see a child even more in need of mastering interpersonal communication. I'm not talking about the value of communication as it relates to grades here; I am talking about the value of communication as it relates to personal health, happiness, and safety….

— from http://www.theatlantic.com/national/archive/2013/02/introverted-kids-need-to-learn-to-speak-up-at-school/272960/
The one place that should value knowledge and skills over personality, the classroom, turns out to be a horrible experience for the gifted people I've interviewed and studied. It wasn't that great for me or my wife, either, as we are both gifted introverts. We can't play the social games necessary in some academic settings. That's depressing.

A colleague of mine has completed her dissertation. The topic was giftedness in the workplace. It turns out, most of us with "special gifts" want to be left alone… not made to be part of some group and not required to speak up in some classes.

Why is there so much faith in the idea that the more people, the better? Groups are not wise; they are often dangerous mobs. Plenty of research has debunked the value of "brainstorming" because the loudest voices end up getting their way. I want to sit and solve problems on my own. When I need help, I'll ask the few people I trust, and then go back to working on my own after getting input from wiser experts.

Why is it wrong to be different? I have blogged about these issues before:
Just a fraction of the examples of personality-type research in higher education:

Thursday, February 14, 2013

Cities and Autism! Diagnostic Rates are not Incidence Rates

Over at Just a 'Lil Blog (a blog I recommend reading) there is the following:
Interview with a Unicorn

How did we come to be in front of the camera? Well, it started with the University of Pittsburgh. See, they're doing a study on the effects of environment on the prevalence or symptoms of autism in the surrounding area. Apparently Pittsburgh is quite a little hotspot for it, and so this study is geared toward…well…something about the environment...in their words, "The Research Study of Environmental Risk Factors for Childhood Autism is a multi-year study which began in 2010. It is being conducted in southwestern Pennsylvania (Allegheny, Armstrong, Beaver, Butler, Washington and Westmoreland Counties) by the University of Pittsburgh's Graduate School of Public Health. The aim of the study is to help identify environmental and other factors that may put children at risk for developing conditions within the ASDs."
— from http://blogginglily.blogspot.com/2013/02/interview-with-unicorn.html
When I read these stories about "autism prevalence" I cringe. There are a number of potential complications, represented by past studies and their questionable "findings" about autism prevalence — which tends to confuse diagnostic rates with actual incidence rates of autism.

Simply because autism is more likely to be diagnosed and labeled in certain places, does not mean the incidence is higher than elsewhere.

Consider the following "rates" of autism as a percentage of disabilities among students from 2005 IDEA statistics:

Calif.Kent.Minn.OhioTexasWisc.
4.36%2.06%7.23%3.12%3.13%3.97%

An interesting trend can be detected in most autism prevalence studies in the United States:
  • Cities have higher reported rates of autism than rural areas.
  • Cities with more universities and health research centers have higher rates of autism diagnoses.
  • The education level of parents correlates to diagnostic rates… and more people with advanced degrees live in cities.
  • Proximity to freeways was correlated to autism diagnostic rates… and cities have more freeways.
  • Higher rates were found among some minority populations… and again, you can guess the urban vs. rural split.
Now, we could conclude any of the following:
  • Universities correlate to autism.
  • Tech centers correlate to autism (for many years, Asperger's was called "The Geek Syndrome").
  • Cities correlate to autism.
So, avoid cities, universities, and freeways?

The lowest diagnostic rates are in the rural Deep South and in the rural Great Plains. The highest diagnostic rates include the areas around Los Angeles, San Francisco, Chicago, Salt Lake City, Minneapolis, Pittsburgh, and parts of New York.

Ask yourself the following:
  • Aren't places with autism specialists more likely to have accurate diagnostic statistics?
  • Aren't educated, middle-class and upper-class families more likely to be able to obtain diagnoses?
  • Aren't the schools and other institutions in higher-income areas more likely to provide screening and supports?
Rural areas have a physician shortage. They also have a serious mental health care deficit. Clinicians and researchers work at… universities and large hospitals. These institutions are in cities. We could easily overlay population maps with demographic maps of income, higher education, and technology companies.

And while the "Amish don't have autism" nonsense has been discredited (I've blogged on that myth several times), there is a simple truth: rural residents are less likely to be diagnosed with medical and mental health conditions because they lack access to specialists.
The German-speaking Amish do have autism, at a rate of approximately 1:250 to 1:200, which is lower than the national average, but oddly close to the rates in other parts of rural PA, OH, and WV. So, that leads to other questions about clusters of autism and why some areas have substantially lower diagnostic rates -- with or without vaccination. 
Never assume that diagnostic rates corresponds to actual incidence of any medical diagnoses. Consider all the variables.

Monday, February 11, 2013

You Don't Understand...

"You don't understand…."

When a parent starts a conversation with those words, I know to anticipate a long list of what I don't appreciate as the person with challenges, compared to the parent of a disabled child. It is both a logical and an absurd statement.

I've never been another color, another gender, another nationality, or another religion — yet I would assume most people try to understand and appreciate the experiences of people from other groups. I know my childhood friends with Spanish surnames were treated unfairly by some teachers. I know people assume I know about cars, while it is my wife who is the engineer. You can appreciate without total understanding — because even within a group the experiences differ.

No, I am not a parent. I am not a caregiver. But, to assume I don't empathize is to accept one of the worst stereotypes of both autism spectrum disorders and mental giftedness. While I might not translate empathy quickly, I definitely have empathy. (All you have to do is be with me while watching a sad movie or when I see a sad story on the news; I have plenty of empathy.)

The lecture from the parents in the "You don't understand" camp usually focus on the stresses of catering (a word they often use) to the needs of their children. They tell me about costs, about time, and about the stress of wondering what will become of the child. The burdens of raising the child are listed, and the list is long.

And this ritual listing, this litany of sacrifices, is supposed to prove that I have no clue about living with the disabled child. How could I? After all, I was once the child, not the parent!

These parents assume that I didn't know my mother was spending her time trying to help me. That somehow I didn't realize that it was a lot of time and energy to take me to medical appointments, to argue with school teachers, and to be an advocate for my success. The claim assumes that I didn't realize my father was working lousy hours to pay bills and provide for my sister and me.

I knew by second or third grade that I was a lot work. I still am a lot of work. Ask my wife. I apologize constantly for being me. For the medical issues, the physical limitations, the strange compulsions, the palsy, the sensory sensitivity, and more. I'd have to be pretty dense to not realize I'm a challenge for the people in my life.

Telling autistic adults labeled as "high functioning" or Asperger's Syndrome, or PDD-NOS, or whatever, that they do not understand the parental or the autistic experience is to assume a great deal. I'd make some poor comparisons, but the basic truth is that to be "mildly" disabled is to still be disabled.

When a parent tells me I don't understand, I also point out that they don't understand my wife's experiences. Her life with me hasn't been easy. They don't understand my experiences. But, so what? We should at least be able to appreciate that our complicated lives each bring something to the discussion of living with challenges or caring for someone with challenges.

When someone tries too hard to be a martyr, I wonder why that person cares so much about cataloging the negatives. What about the good things that a child brings to your life?

A wonderful woman I know, who helped me through my doctorate during a rough time, told me that we are all disabled at various times. As children we need our parents and in old age we will need our children and the kindness of strangers. There comes a time when our bodies will fail us, it simply happens sooner to some than others.

Whenever I start to whine about something, my wife reminds me that I have her, my cats, and great family. I don't get to play for pity around her. I don't tell her that she doesn't get me. I don't try to convince her that she doesn't understand. Sometimes, I remind her that I have some limitations, but if I start to whine, she tells me I'm whining.

Instead of telling me or others that we don't understand, why not tell us what help you seek or what you want to accomplish? Complaining that you are all alone, that nobody understands, can only make you feel worse about life.

Monday, February 4, 2013

Shoveling Snow, Day After Day

I have swept and shoveled snow every day since Wednesday. Today is Sunday. That's five days of snow removal. I'm sick of the snow — I want some sunshine and warmer weather. When we first moved from California to Minnesota, I looked forward to the White Christmas. Now, it wouldn't bother me to never see snow again.

Western PA is nothing like Minneapolis. The snow storms here have less snow and the temperature is warmer. I can remove the snow in about 30 minutes, without getting frostbite. Minneapolis was brutally cold. Here, it is the lack of sunshine that gets depressing.

We did leave the house today, because I was getting stir-crazy. We had lunch (Chinese buffet) and walked a mile at the local mall. But the distance from the car to the mall was sufficient to turn my cheeks pink and my hands white. The slightest breeze cuts through you when it is snowing.

As readers know, I hate gloves and hats when it is cold. That's a bit odd, I realize, since I like fine suits and nice fedoras. However, cold-weather clothing is annoying. The thick insulated gloves are not like fine leather gloves. The hat I have to wear while removing snow is hot and itchy — but it keeps my ears warm.

I cannot wait for next week. Normal temperatures should return, which means the end of below-freezing highs. Of course, rain will replace the snow, and the clouds will still block the sunlight.