Friends

A concerned mother asked about friends. She was worried because her teenager only had one close friend.

Do I have friends? An interesting question, and one I doubt most people can answer easily. My wife and my family are my close friends; there is no one else I communicate with at least monthly on serious matters.

I have friends, people with whom I discuss matters of minimal consequence. Online contacts from my "real life" are generally of this sort. We communicate, but seldom about personal matters.

From Discovery.com:

In 1985, the average American claimed to have three close confidants (which could have included spouses or family members, in addition to friends), but by 2004, the average American had only two close confidants. One in four people reported having no one to talk to at all.

This isn't an "autism" or "introvert" or "gifted" issue. This is a social crisis much larger than any labels could explain. Most of us don't have many close friends. I've read estimates that most people have from two to five close friends. Numerous studies have also revealed a human limit of 150 (roughly) "acquaintances" before we are overwhelmed by the data required to maintain social and emotional connections.

Online, we have hundreds of "friends" that are nothing more than occasional (or never) commentators on our "walls" and "pages" thanks to social networks. I don't really know many of my "friends" and I prune the lists from time to time. We've confused the value of collecting friends, treating them like prize tokens at an arcade, with the value of maintaining true friendships.

My wife and my immediate family are the people I interact with daily and weekly. Those four people are my friends. That's not a bad number, according to researchers.

So, to the concerned mother I say, "Don't worry. Having one close friend is good."

I appreciate my acquaintances, including coworkers past and present, but friendships are rare. Celebrate each one, knowing it is special even according to researchers.

Not Caring versus Not Obsessed

I would be lying if I made any claim to understanding the people for whom a particular trait or set of traits is an obsession. I do not relate, and I cannot "put myself in X's shoes" to comprehend such views of one's self.

When an autistic self-advocate wrote to me that I didn't take autism seriously enough (that's a paraphrase), I wasn't sure how to respond. I believe my wife would say I take everything too seriously, and that's the problem.

The next question, and maybe this is the revealing one, was: Why don't I tell my coworkers, students, and others that I am a diagnosed autistic?

It doesn't seem like that would help anything. In fact, I could see it causing problems. Plus, "autistic" isn't a label with which I was raised and it isn't a label I consider that often.

Actively being an "Authentic Autistic Advocate" (some sort of service mark or trademark must apply) would be distracting. I'm already busy being a professor, a writer, and a programmer. You also want me to focus on being something else?

If anything, I struggle with being "too many things" instead of one or two things, which seems to be the expectation.

Professionally, I don't know what I am. I love creative writing, I enjoy teaching, and I am a decent computer geek (though my skills are currently out-of-date). If I could study typography, graphic design, art history, economics, philosophy, comparative religion, fashion design, film production, music, physics, geology, biology, cooking… I'd study it all. There isn't enough time in the day to read everything I want to read and learn. I don't have time to practice the skills I wish I could master. And, obviously, I lack the focus to select one thing, one discipline, to master above all others.

My dream as a writer remains the ultimate trifecta: a Tony for best play, a New York Times bestseller, and an Academy Award nomination for a screenplay. Now, that would be amazing. Unlikely, but that's the nature of dreams.

As a geek? I'd just like to spend some time coding a few little iOS apps my wife and I would use. I haven't had time to master Objective-C and the Cocoa frameworks. I'd like to attend one of the Big Nerd Ranch bootcamps, but I'm too busy. I'll simply need to set some time aside to code.

As a hobby artist, I'd like to learn more about painting so I could actually hang my artwork in my office and not be embarrassed.

My ideal lunch with someone famous? Professor Michio Kaku. Could I also ask Neil Gaiman along? Oh, and maybe Yo-Yo Ma could join us. Imagine that trio of brilliant people talking about the role of knowledge and curiosity in creativity.

I'm sure the point is clear: I am too scattered to focus.

It is not that I don't care about being an autistic advocate. I simply happen to believe that doing well and succeeding is something of an advocacy for myself and others. If I can succeed, that's a sign that others can, too, in their own ways.

I have to focus on my projects to complete them and to succeed. I cannot dwell on what is different about me. If I start reminding myself what I cannot do, I will become paralyzed, emotionally as well as physically. It's odd, but when I remember my right arm doesn't quite work properly is when I have the most trouble with the arm and hand. I do best when I ignore my limitations.

Writing The Autistic Me is useful because it does remind me that I have odd limits. I worried tonight that the restaurant noises, especially some children running about the tables, would force us to leave. I worried while shopping that I might not be able to handle the lights, which were flickering in a snowstorm. But, knowing my limits doesn't mean embracing them. I want to learn the limits to work around them, and then ignore them.

Once I ignore my limits, I can focus on being all those other things I love being.

Pain and People

I'm in a lot of pain lately. Extreme pain, causing a noticeable limp, slouch, and squint. I've already been to a doctor and know what the issues are. I have two bone spurs in my left foot (sole and ankle) as well as a "wrinkle" in my right eye (again). The eye is out of focus, even with my glasses, and hurts. The result is headaches and migraines, which cause lights to seem yellow and other strange tricks on my mind. The foot is like having nails shoved to the bone.

Obviously, it is hard to be "fun" and people friendly in such discomfort. To be blunt, I don't want to deal with anyone right now. I want the pain to go away.

It isn't easy to teach, standing for 90 minutes, while wanting to scream in agony. Walking from my Jeep to my classroom and office is a miserable journey. I'm taking painkillers, but they wear off about mid-class.
Maybe things will be better in a few months. I need to get into the doctors and address these issues over the summer break. In the meantime, I'm trying not to scream at too many people.

Diet Progress and Autism

So far, counting calories has helped me lose about five pounds. At the same time, counting calories reinforces the fact that bread, pasta, rice, and potatoes are evils I need to resist a bit more. Since my favorite foods are Italian and Mexican, I'm not sure how to avoid bread, rice, and pasta. The potatoes, I can do without. Bread? Pasta? Those will be a challenge.

One of the things my wife will attest to is that when I get a craving it is specific and nothing else will do. It isn't that I'm a picky eater, overall, but that I am struck by cravings. There are days when some foods aren't appealing, too.

Parents and teachers tell me that some children and teens with autism are much, much pickier. One mother told me her autistic son went through a period when he would only eat the "blue box" of macaroni and cheese for lunch. Nothing else was acceptable for the young boy. When the mother tried to add anything to the pasta, he wouldn't touch it.

A diet of cheese and pasta? I can foresee a weight issue if the boy isn't active enough. Maybe a multi-vitamin would help, but how does anyone get a balanced nutritional intake from Kraft instant Mac n' Cheese?

I'm wondering if all children don't go through food stages. My wife says she did. I've seen this among the children of friends and coworkers, too. Some children won't eat vegetables, others won't touch pudding. Seriously, how can anyone not love pudding? Especially tapioca or dark chocolate. (I also love the seasonal special flavors, like pumpkin spice pudding and peppermint chip.)

Schools don't have many choices at lunch. You get what they have or nothing. How does an autistic child deal with this? I'd eat most things in the cafeteria. I volunteered for cafeteria duty because you could have extra of some things, like the "shoe fly bread" or whatever it was called. I have to admit, I even liked the deep-fried beef and bean burritos. I didn't care for what they called "pizza" though. It wasn't pizza.

At least as an adult I can choose my meals. Today, we had pizza for lunch. The lunch was under 300 calories, too. But, I wasn't that impressed with the pizza crust. I believe it was made in the same factory that must provide the school lunch pizzas.

Asperger's Syndrome as Trendy

I know this topic is a minefield, but I happen to agree with two recent column in the New York Times. "Autism" as a label and diagnosis is being applied to too many people, especially the diagnosis of Asperger's Syndrome. My experiences are purely anecdotal, but when I speak to groups about autism it is common that one or two young adults and/or their parents approach me to tell me that they have self-diagnosed Asperger's Syndrome.

Self-diagnoses are not official diagnoses. You should always work with a clinician to determine something like an autism diagnosis. What if the individual actually has a social anxiety disorder and not an ASD? What if the individual has mild depression? There are so many "what-ifs" that I must always recommend a professional evaluation.

Teachers even come to me and say, "I believe I have students with Asperger's in my class." In general, these teachers end up describing what we might call "geeks" or "nerds." Sometimes, they also describe the shy, quiet bookworm like my wife. My wife is simply an introvert, but people ask me, "Is your wife on the spectrum?"

My wife, and many of the people I know, are introverts who appreciate quiet time to read and explore knowledge. There is no need to find hidden pathologies. My wife isn't shy, and doesn't have social anxiety. She simply wants to be left alone.

The first column in the NYT with which I found myself agreeing, at least to some extent, was this one:
http://www.nytimes.com/2012/02/01/opinion/aspergers-history-of-over-diagnosis.html?ref=opinion

January 31, 2012
Asperger's History of Overdiagnosis
By PAUL STEINBERG
Asperger syndrome and Aspies — the affectionate name that people diagnosed with Asperger syndrome call themselves — seem to be everywhere. 

Considered to be at the high-functioning end of the autism spectrum, Asperger syndrome has become more loosely defined in the past 20 years, by both the mental health profession and by lay people, and in many instances is now synonymous with social and interpersonal disabilities. But people with social disabilities are not necessarily autistic, and giving them diagnoses on the autism spectrum often does a real disservice.

The key point in the opening is that some people with social "disabilities" (and I believe even people who have no disability, only introversion) are being diagnosed with Asperger's Syndrome. I know that's not popular to state within the autistic community, but it is true. Maybe it is only a fraction of the diagnoses, but it is happening.

Isn't every "official" diagnosis based on the Diagnostic and Statistical Manual of the APA? No. Even with a revision, broader autism criteria will remain enshrined in state and federal regulations for years to come.

The DSM criteria are not the only guides to assigning the autism labels, but the DSM-IV and upcoming DSM-V do set the standards.

I've had school psychologists tell me they have "diagnosed dozens" of students. In some states, schools can classify children without independent evaluations; laws vary state to state. In California, you can be officially diagnosed by a neuro-psychiatrist and not qualify for supports unless and until the state decides your impairment affects daily life substantially. And the state can also label you "autistic" without an official diagnosis.

What happens when someone is misdiagnosed? That person fails to receive appropriate supports. And when we diagnose someone without a "disability" we are misdirecting resources.

[Children] and adults with significant interpersonal deficits are being lumped together with children and adults with language acquisition problems. Currently, with the loosening of the diagnosis of Asperger, children and adults who are shy and timid, who have quirky interests like train schedules and baseball statistics, and who have trouble relating to their peers — but who have no language-acquisition problems — are placed on the autism spectrum.

I've stated repeatedly that I know the new DSM-V won't change my life. I am disabled and that isn't going to change, with the "autism" being the least of my personal concerns. My physical injuries dating back to birth place far more restrictions on me than my inability to deal with social situations. Still, I'm unlikely to "fall out" of autism, too. I'm not merely socially "different" — I rock, I tap, I'm sensitive to stimuli, I'm repetitive, and so on.

One of the odder trends is to "retroactively" diagnose famous people so we can all "take pride in autism" for some reason. I don't take pride in being unable to deal with people. I don't take pride in my flapping arms and stuttering speech. And I don't need "role models" to make me feel better. I'm not going to be Einstein or Bill Gates.

Labeling people without a real diagnosis is just plain reckless. What if those people had other issues? And, why do we care? I want to celebrate someone's accomplishments, regardless of his or her challenges.

In recent years speculation has abounded that Albert Einstein must have had Asperger syndrome. Christopher Hitchens speculated that his intellectual hero George Orwell must have had Asperger. Indeed, Orwell had major problems fitting in at British preparatory schools — not surprisingly, he hated the totalitarian tenor of teachers and school administrators — but someone on the autism spectrum could probably never have become a police officer in Lower Burma, as Orwell did. Similarly, writers like Charles Morris have noted that Warren Buffett is thought to have a condition on the autism spectrum, presumably Asperger syndrome.

Failure to "fit in" with society is not a neurological disorder. It is a social impairment, but not a disability. Being different is not always a sign of anything except being… different.

Many people, now inappropriately labeled as Aspies, make the world a richer, more interesting place. Their quirky absorptions in, say, physics, baseball stats or investment strategies add enormously to human advancement. […] Their seriousness and singularity of focus fit more compatibly with the interests of older adults rather than the interests of their childhood or young adult peers.

Some autistics make the world a better place, yes, and so do some people who are different. Most people, disabled or not, simply exist. Few individuals have a lasting affect on humanity. Sorry, but that's just how it is. I might affect a few lives, I might not. Autism might influence what I contribute (it probably does) or it might not.

For better or worse, though, Asperger syndrome has become a part of our cultural landscape. Comments about a person's having "a touch of Asperger's" seem to be part of everyday conversations. Even an episode of "South Park" last year was devoted to Asperger syndrome. We can only hope that better physiological markers distinguishing between the autism-spectrum disorders and pure social disabilities can stem this tide of ever more pathologizing.

I do agree we need to stop with the pathologies. Being different is not a disorder.

And then there was this column:
http://www.nytimes.com/2012/02/01/opinion/i-had-asperger-syndrome-briefly.html
:: start

January 31, 2012
I Had Asperger Syndrome. Briefly.
By BENJAMIN NUGENT 

FOR a brief, heady period in the history of autism spectrum diagnosis, in the late '90s, I had Asperger syndrome. 

There's an educational video from that time, called "Understanding Asperger's," in which I appear. I am the affected 20-year-old in the wannabe-hipster vintage polo shirt talking about how keen his understanding of literature is and how misunderstood he was in fifth grade. The film was a research project directed by my mother, a psychology professor and Asperger specialist, and another expert in her department. It presents me as a young man living a full, meaningful life, despite his mental abnormality. 

"Understanding Asperger's" was no act of fraud. Both my mother and her colleague believed I met the diagnostic criteria laid out in the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition. The manual, still the authoritative text for American therapists, hospitals and insurers, listed the symptoms exhibited by people with Asperger disorder, and, when I was 17, I was judged to fit the bill.

A psychology professor diagnosed her son with Asperger's. How could we not trust such a qualified individual? And yet, this professor later admits to her son that the diagnosis was incorrect. How did this happen? Because we have associated "awkward" and "geek" with "autism" for several years.

As I came into my adult personality, it became clear to me and my mother that I didn't have Asperger syndrome, and she apologized profusely for putting me in the video. For a long time, I sulked in her presence. I yelled at her sometimes, I am ashamed to report. And then I forgave her, after about seven years. Because my mother's intentions were always noble. She wanted to educate parents and counselors about the disorder. She wanted to erase its stigma.

The idea that the psychology professor had "noble intentions" doesn't persuade me to forgive the trend of over diagnosis. What happens to a child or adult misdiagnosed because of a quirky personality?

I wonder: If I had been born five years later and given the diagnosis at the more impressionable age of 12, what would have happened? I might never have tried to write about social interaction, having been told that I was hard-wired to find social interaction baffling.

This is one of the questions I have about myself. I write. But, I also struggle with issues of character motivation. Creating unique characters isn't easy, but it isn't easy for any author. That's why I do like most other authors and base characters on bits and pieces of people I've met in real life or read about in the media.

The column ends with a call to clarify what Asperger's Syndrome, and by extension what the autism spectrum, is.

But my experience can't be unique. Under the rules in place today, any nerd, any withdrawn, bookish kid, can have Asperger syndrome. 

The definition should be narrowed. I don't want a kid with mild autism to go untreated. But I don't want a school psychologist to give a clumsy, lonely teenager a description of his mind that isn't true. 

Benjamin Nugent, the director of creative writing at Southern New Hampshire University, is the author of American Nerd: The Story of My People.

A narrower definition might help avoid misdiagnoses. However, I believe it is already too late to reign in the popular definition.

I realize that some people embrace the label of "autistic" and "Aspie" while I don't get that passionate about the words. But, what if some of the people embracing the words should be embracing "social difference" and not autism?