Thursday, July 28, 2011

Who Are 'The Mediocre' People?

In a post that was a private reflection, moved off the main page, I mentioned "the mediocre people." I've been pondering this concept and believe it needs some clarification that might be of interest to most of my readers.

The Mediocre are not defined by their education levels, incomes, faiths, political beliefs, genders, races, or any number of other categories.
Oxford American Dictionary: 1. of only ordinary or moderate quality; neither good nor bad; barely adequate. 2. rather poor or inferior.
Merriam-Webster: moderate or low, poor quality. Of a poor to middling character.
What is "poor character" to me? It means you are not a role model. It means you aren't one of the good or great people. Maybe The Mediocre don't try. Maybe they don't care. But they are what they are.

Most of the good and great people I know are from humble backgrounds. They are farmers, nurses, librarians, police officers, farm workers, mechanics, and many other professions. They are gay and straight. They are Christians, Jews, Muslims, atheists, and at least a half-dozen other faiths. They have college degrees and some have not completed high school. They can be rich, poor, middle-class, or whatever else you might call an income level.

You might consider the good and great people "average" but I consider them much more than that. The good people do all they can to help their neighbors and their communities. They listen and try to understand what other people might need to succeed.

My parents don't have college educations. They've struggled at times, financially, but they've always given to others. They both work with people needing assistance. My mother is a teacher's aide and my father was a nurse. These are my role models. Good people. Not perfect people, not "above average" by most standards, but special people because they have the best intentions most of the time.

Sure, good people make mistakes. But good people try to set things right.

Being one of The Mediocre is purely a reflection of how you treat other people. The Mediocre are:
  • Convinced "tolerance" and "diversity" are somebody else's problem.
  • Certain they themselves are accepting and tolerance, of course. 
  • Afraid of anyone too "odd" or "strange" or "different" from their experiences. 
  • Searching for reasons to be angry at "the others" (and "other" varies). 
  • Seeking praise and accolades instead of doing what's right because it is right. 
  • Unaware of when they hurt other people, intentionally or unintentionally. 
  • Unwilling to apologize without deflecting and crafting excuses. 
  • Endowed with a sense of entitlement and superiority.
I've met evil people. These were sociopaths, pedophiles, drug dealers, thieves, frauds, and cheats. These are not The Mediocre, because many of the evil seem to take pride in breaking laws or hurting people.

Evil people are easy to fire from a job or expel from a school. Mediocre people are hard to dismiss from our lives. The Mediocre are simply those people we can't seem to avoid. The Mediocre are, I would like to imagine, a small 10 to 20 percent of people. At least I'd like to imagine it is merely a few making our workplaces, schools, and other places miserable.

Parents of special needs children meet The Mediocre too often. It is the man or woman asking why you can't control your child. It is the person on the train you ask to turn down the music and he or she then increases the volume, to your child's distress. It is the teacher or doctor who talks down to the parent or individual with special needs. It is the school board member or principal unwilling to listen to parent complaints about poor support programs.

Sadly, we often have little recourse when dealing with The Mediocre.

But, don't forget that there are many more good and great people in our lives.

Wednesday, July 27, 2011

Out and About, Alone

In the last week, I've managed to go to lunch or dinner four times by myself. That might not seem like a big deal to most people, but it can be a challenge for me to go to new places with my wife, much less by myself.

I don't like noise, unusual sounds, some smells, and crowds. So how did I manage to go out and actually enjoy it?

First, I went to places within a mile or so of our house. If I felt stressed, I could always head home quickly and I wasn't so far away as to worry about getting lost in a state of panic.

Second, I went to eat at times before the "rush" crowds. I ate lunch at 11:30, when most places start service yet most customers haven't arrived. I ate dinner at 4:30, with the same logic in mind.

Third, I asked to sit facing the door and windows. This helps me avoid feeling trapped.

I ate at an Asian buffet, a little Italian place (with an odd menu mix that strayed far from what I consider Italian), a regional chain diner, and a Mexican restaurant located in a strip center.

The clear winner in my mind was the Mexican restaurant. It was quiet, the TV was muted, and most of the diners were elderly locals. The food was wonderful, especially the rice. Perfect rice is no small achievement. The waiter was attentive, without being too attentive. He refilled my tea constantly, which is key to a good tip from me.

The Italian place was too noisy, even though it was before the dinner hour. The music was a bit loud for me and the patrons present spoke loudly to be heard over Sinatra and Dino. Still, the food… amazing. I boxed most of my meal, and learned they offer a to-go option. Wonderful food, but I'd have to go back on a quieter day. My mistake was eating out on a Friday afternoon, I believe.

Diners and buffets are what they are. The diner was entertaining because the waitresses and hostess seemed to know everyone walking through the door. I might have been the only person to ask for a menu.

I was tense everywhere but the Mexican restaurant. It is a place I will visit in the future. It reminds me of home.

The reality is that shopping, eating, and even working without friends and family around is difficult for many people. It worries me because there's no one here to help when I can't deal with a situation. It's not exciting, as some of my friends have suggested. It is anxiety-inducing. But, I seem to have done much better after a rough first night or two in our new house.

Some readers might think it is silly for a successful adult to worry about eating alone. But, I know that parents of autistic and other special children will understand. I find myself waiting for that "one thing" that will be too much for my senses. I worry throughout most meals. I hate the tension.

But, I managed. And I found a place where I feel welcomed and safe.

The State of Learning Disabilities

The State of Learning Disabilities

The National Center for Learning Disabilities has published a survey that includes the following data:
The U.S. Survey of Income and Program Participation survey shows the LD prevalence rate among the U.S. population (ages 6 and older) to be 1.8%, totaling 4.67 million Americans.
  • Males are much more likely to have acknowledged learning disabilities than females.
  • The unemployment rate for those with LD was twice that of those without LD.
There are major disconnects between high school and postsecondary education which create obstacles for students with LD.
  • Often students with LD have lower aspirations regarding their own postsecondary education.
  • Just under 11% of undergraduates reported having some type of disability.
Only 46% of students with a LD found paid employment, full or part-time, within two years of leaving school.
I've read various estimates, indicating anywhere from 17% to 30% of adults with autism spectrum disorders find regular employment. Unfortunately, "regular" employment is not always full-time and it is often far-below the normal employment position held by similarly educated individuals within the general population. ASDs and other cognitive differences result in lower life-time earnings, even among those with Asperger's Syndrome, High-Functioning Autism, or PDD-NOS who do complete high school and a two-year degree program. Within higher education, the Chronicle of Higher Education has reported professors with ASDs are also less likely to be full-time tenure-track faculty.

Monday, July 25, 2011

Inadvertent Disclosure of Autism

Inadvertent disclosure happens, I was reminded tonight. Because I've been on the road, I've been using several email accounts, usually based on which "webmail" solution was working best. What I forgot was that my Yahoo account was being used primarily for autism mailing lists and groups, not for anything else. So, by using my Yahoo email, the signature with links to this blog was included.

Now, a mailing list that has nothing to do with autism has links to this blog. An interesting question arises, and one I'm not sure how to address — or if it is worth addressing. I do know that at least two people followed the link from my email to the blog, but no idea which two. That does matter, since some people are more understanding than others.

I believe most of the men and women on that list would understand traumatic brain injuries, such as occurred at my birth, along with the other injuries that might (and only might) contribute to the traits categorized as HFA. Other people aren't likely to be so understanding. The notion that an "autistic" person is amongst them might be disconcerting.

Then again, my seizures, palsy, dystrophy, and so on, can and have offended various people. Shaking and trembling bothers some people. My blunt honesty bothers others. Of course, seizures are just plain annoying, even from my perspective. The point is that some people will never appreciate that some of us are not and will never be typical.

During college, I started putting my paralyzed right hand in my pocket about that time, as if I could hide that it didn't work properly. I'd stand with my hands behind me during the national anthem or pledge, so no one could tell I couldn't place my hand over my heart without great effort and pain. I didn't talk about being in a plastic back and body brace for six years. I didn't want anyone to know I was "damaged" in any manner.

Several friends joined the military. I envied them. My medical records? No way was I going to be allowed to serve in any institution that needs men and women in good physical shape. And so, even as the least likely people from high school joined the armed forces, law enforcement, or public safety institutions, I was left to sit and write or program computers.

I still try to hide, though I probably should be over any fear of being rejected as different. In a group of programmers, I want to be another programmer. In a group of writers, I want to be another writer. In a group of autism researchers… I have no idea what I want to be.

Last week I met a lot of brave men and women. And yet, I'm still cowardly when it comes to discussing my complex physical existence. These men and women faced life and death situations, by choice. I've only faced death as an unwilling traveling companion through life.

A few years ago, something called a hemoglobin level dropped dangerously low and I needed two blood transfusions during the Christmas holiday. When I returned to classes, I only told my adviser. I didn't want anyone else to know I had been hospitalized in the ER on Christmas Eve.

I actually taught within a day or two of eye surgeries, necessitated by my base membrane dystrophy. I didn't want anyone to think I couldn't do the job.

In the end, that's not about being strong. It is about being afraid, being a coward. Even now, I'm afraid of what people think of me when they learn I was considered "mentally retarded" by doctors following my birth. I'm afraid of what people will think then they learn I'm a thousand broken pieces, held together by determination and a lot of denial.

Being on the road, I never thought my email could lead to disclosure of my medical issues. Mistakes happen, and this was definitely one of them. Maybe nobody will comment. I have to believe whoever followed the link in my Yahoo signature (which I have since changed) was at least a little surprised.

No comments will allow me to continue pretending no one from the other "communities" in my life knows I'm also The Autistic Me. Denial at work.

The "Aspie" Nature of Anxious Cats

There is a book entitled All Cats Have Aspergers Syndrome. I definitely know our cats have not dealt well with the disruptions associated with moving. One of our cats, Pumpkin Kitty, is so anxious that he's on Prozac for kitties. He struggles even in familiar settings, but moving has been a nightmare for our little boy.

He's been hiding in dark spaces, from the tubs to behind doors. He loves to hide in the closets of the new house, too. He does not want to wander the hallways and discover new places, like the other cats are doing. He wants things the way they were.

Actually, I think he'd be happier all the way back in California, though he wasn't at ease there, either. Something about each move seems a bit harder on the poor guy. This move is it, though. We're going to try to stay in this new location for the rest of our kids' lives and up to our retirements. I'm in no rush to move again, either.

We have had cats that only ate one brand of food. We've had people cats, and we've had cats with no desire to meet strangers. We've had adventurous cats, and we've had skittish cats. We've had cats who preferred one or the other of us, at least when given the choice. Cats are loyal, on their terms. Pumpkin is my wife's little boy. He misses her a lot, and I'm sure he'll feel better once she arrives later this week.

Cats like routines. They seem to like order, too. Change? They don't like change at all.

At least our kids are all together, in their new home. It will take some time, but I'm sure they will adapt. Probably sooner than I will.

Update: PK started ramming into walls and windows at full-speed, trying to break free from his new home. To him, this isn't home. It isn't where "Mom" is (yet) and it can't be where he belongs. I'm feeling very sorry for the little guy.

I tried to check on him. I ended up bleeding. It's too bad I can't speak cat.

Monday, July 18, 2011

Experts critique statistics, conclusion of autism twin study - News & Commentary - Simons Foundation Autism Research Initiative (SFARI)

Experts critique statistics, conclusion of autism twin study - News & Commentary - Simons Foundation Autism Research Initiative (SFARI):
"For example, in March, Shiva Singh's group at the University of Western Ontario analyzed the genomes of identical twins among whom only one twin has schizophrenia. Singh's team found that identical twins carry different spontaneous genetic mutations."
It is difficult for many laypeople, and even some with science backgrounds, to accept that "genetic" does not mean hereditary. I've written about this several times. Genes mutate during development of the fetus. During the first six to eight stages of development, minor errors in replication can affect all future development. Changing one cell among millions isn't so bad. Changing one cell among hundreds? That leads to potentially serious spontaneous genetic replication ("copy number variant") errors.

On the Road

I haven't been able to blog this week and might not have much time until next week. I'm on the road, with my wife "holding down the fort" (and the cats) while I'm away. I'll only be home with her for less than 24 hours and then I'm on the road again.

I'm exhausted and that's never a good thing. Last night I hit my breaking point. Thankfully, I left the conference hotel three hours before my flight so I could sit here in the airport and relax. Yes, the airport with all its sounds, smells, and vibrations is a better place than the hotel was. Here, I can sit and decompress before the flight.

Last night was one of those nights when I was "so over" people, as a friend says. I just wanted to sit in the hotel room and watch "In Plain Sight" and "White Collar." People can be very annoying, especially when they've had drinks.

After putting up with the mean-spirited nonsense of someone important for long enough, I quickly departed the hotel restaurant for my room. I get sick and tired to how mean and intolerant people can be. They justify this by calling anyone with whom they disagree evil, dangerous, ignorant, etc. I get sick of it.

If you don't agree with the views of the majority of people at a conference, don't be there. I wouldn't attend some conferences because they don't represent what I consider to be sound science, public service, or positive advocacy. But if someone else wants to attend a conference, that's fine. Don't go to a group with whom you disagree if you know you'll be secretly (or not so secretly) seething with anger. What's the point?

Anyway, I'm glad to be getting on the road (in the air) and can't wait to have some time alone with the cats. I need that.

Adults with Autism: My Big Challenge

I have posted a follow-up to clarify "The Mediocre" for myself and others.  See "Who Are The Mediocre People?"

The essence of the latest "Ask a Question" submission:
What has been the biggest challenge for you in the adult life?
http://theautisticme.blogspot.com/p/ask-question.html
I've had a few weeks to ponder this, but a recent incident comes to mind and I think it encapsulates the greatest challenge from my perspective.

There are bullies in adulthood. They try to ruin you to make themselves feel better.

Bullies are those people who don't want to understand my challenges or anyone else's challenges. They want to dismiss me as "strange" or "weird" and ignore any responsibility they might have for creating overwhelming situations. People can be mean, pushy, aggressive, and generally rude. Such attitudes exhaust me. Eventually, the rude person wins, and I have to leave the situation. I can't handle pushy people, yet many people are pushy.

Dealing with the best of people isn't easy for me. Dealing with the mediocre bullies, who are all-too common, is nearly impossible. At least the evil are evil, period. Most adult bullies we encounter in the workplace, school, or in organizations are something else. They aren't evil, but their effects can be.

Those pushy people convinced they are right and you are wrong about everything are the ones I cannot understand. These people stand behind you at the self-checkout line in the grocery store, sighing loudly because they are "too polite" to yell outright that you're too slow. These mediocre people talk behind your back, because they're "too polite" to argue or make claims to your face. What is most annoying about mediocre people is that they believe they are the best of best.

I don't understand most things people do, socially, but I really don't understand tearing down other people to make yourself feel good.

I met someone this week who "jokingly" insisted other people call her "The Queen" of an organization. That's not funny, nor was her attitude towards other people. Someone should remind her the Queen of Hearts loses in the original Lewis Carroll stories. Pride leads to an eventual fall from power.

During the same trip, I met another person who insisted a waiter, yes a waiter, address her as "Doctor." Get over yourself. You aren't better than that waiter. If anything that poor young man has to deal with all manner of jerk during his shift. He was a good waiter, in my opinion, and didn't need to be told what to call a customer. An outright bad person would have been less offensive to me than the mediocre person trying to pump up her own ego.

UPDATE (2011-Jul-28): The doctor involved sent me a note explaining her experiences. I owe her this clarification and an admission that I hadn't thought about how much things have changed. It wasn't that long ago that women in health care were not treated with respect. To be a woman Dr. of any sort was rare. A female doctor was still referred to as "Mrs. X" instead of as "Dr." in many formal and social situations. People called men by their formal titles, but not always women.  My generation is far less formal, overall, something I attribute to social media. I can't recall any professor using the title "Dr." and many of my physicians use their first names. Times have changed, but it was wrong of me to forget the past. 
Mediocre people don't always intend to be mean, self-centered, bullies. I wonder if insecurities are to blame. I have no idea. These people don't realize they're being mean. When they are told they are being jerks, they can and do honestly deny meaning any harm.

These mediocre people don't get it when a waiter no longer smiles, or when people no longer believe it is funny to shout "Off with her head!" during meetings. Mediocre people don't have a clue how mean they are, because they can't imagine they are anything other than perfect.

Self-important people don't ask what's wrong when you start shaking. They don't wait for an explanation when you are trying to say the lights or sounds are giving you a headache. The mediocre not only cannot appreciate your special needs, but they dismiss your challenges as being imagined or the latest trend. They can't imagine you really have a cognitive challenge. You can't be autistic. You can't have a learning disability. The only way the mediocre admit to your challenge is if the mediocre get to offer you advice and "help" you.

I tried to explain to one of the mediocre people that I have some serious medical issues. How did she respond? She posted to a listserv that I stormed out from a dinner and exhibited "strange behavior." She didn't hear a word I said about seizures, palsy, or anything else. She made up her mind to dislike me because I wasn't perfect like her. I didn't know she was brilliant, which would have proven my brilliance in her mind.

Those people, and there are too many of them, are the challenge of daily life. They are the middle managers (our bosses in many cases). They are the customers who "know" how to use the computer and try to tell you how to solve the problem — the problem they called tech support to solve. They are the parents of "geniuses" who threaten to file a complaint because their perfect child does "B" or even "C" work.

People aren't all mediocre, but a great many self-important people are. If you don't play along with their self-image, they can and will try to damage your reputation. I've had professors, doctors, and lawyers try to play the "I'm important and you're not" role.

I try very hard to be a good, decent person. I sometimes fall short. But at least I know I'm not better than anyone else. I don't feel entitled to anything. I believe I have a responsibility to help other people when I can, and they owe me nothing for choices made and actions taken.

If I were a better person, I wouldn't let the mediocre people ruin my days. But, they do.

My wife says this is the simple summation of the challenge I'm describing: There are bullies we will encounter throughout life. Bullies are all ages, and they always have a rationalization for being jerks.

I can't deal with bullies, but I sure meet a lot of them.

Tuesday, July 12, 2011

Book Excerpt: The Autism Assessment, Part 3

Okay, here's the last bit I'm going to share online from my 2006 "re-assessment" that was requested for the University of Minnesota Graduate School. Remember you are reading an excerpt from my upcoming book, not the full chapter. However, your questions and suggestions will help me craft a better book.

And yes, I am still reminding visitors that my book A Spectrum of Relationships is available from the two biggest online bookstores for $2.99. I appreciate how supportive readers of this blog have been.

Dealing with the Assessment (and Some Denial)


The Doctors Conclude… 
Neuropsychologically, S. presents with a complex history, driven by significant physical trauma at birth. He does have a seizure disorder (which is treated medically). Imaging reveals specific left frontal and temporal lobe injury. A progressive neurological disorder is not ruled out. Characteristics of high-functioning autism, resulting from the brain trauma, are apparent. 
 I’ve had a few scans of my brain, along with the unpleasantness that was two EEG (electroencephalography) tests for seizure disorders. It takes almost an hour to place the electrodes for the EEG, which also requires an immediate shower afterwards. The scans are at least done without the mess, though I won’t argue that the claustrophobic tubes are enjoyable. The last two scans did include classical music, which was interesting. 
Some of the imaging and EEG tests have shown a reasonably normal brain, without any unusual features. But, not all of the tests were normal. One or two of the scans revealed “oddly balanced” brain activity according to records, with more activity on the right than the left hemisphere. I have no idea what to think of differing results and interpretations other than to state that I seem to have done well enough in life regardless of any abnormal findings. What is the “specific” injury this neuropsychologists found interesting? It implies a clear, precise, “you can’t miss it” on the video screen, blotch. 
The last two sentences are the troubling ones. “Progressive” is great when it refers to a slot machine jackpot. It’s not a great word when you’re describing a potential neurological disorder. It’s a bad thing. A very, very bad thing. You get the point. And if that was not upsetting enough, the psychologists decided I have “characteristics of high-functioning autism,” which means they do consider me autistic. 
The primary psychologist said there’s no way to know if I “would have been autistic anyway” or if a birth trauma altered things. At least one neurologist suggested a positive spin on this: birth trauma might have countered some of my autistic traits. How is that possible? The brain could have responded to a physical injury by “rewiring” itself. The doctors admit, however, that it is more likely that my birth caused everything — which means I would have been “normal” if things hadn’t gone wrong. Nobody knows for sure, though. 
Was I genetically predestined to be different? The neuropsychologists told me that you are born with a developmental disorder, and most research confirms this. There is also evidence that certain injuries and illnesses can affect an individual’s personality. Maybe I was “made” autistic? I don’t know and will never know what might have been. 
This leads me right back to the question of bitterness and blame. I can’t really say I’d like to be normal. I think I would, but how would I know? Maybe normal isn’t that much better. What I know is what I am; it’s all I’ll ever know.
Attentional/executive elements are also noted, frequently occurring in conjunction with cerebral trauma. Right-sided weakness and palsy (tremors) persist. Inherent with the above-described patterns, as well as a reaction to environmental variables, self-deprecation and anxiety are evident. (Further, medical treatment affects his performance.) 
My mind wanders under stress, seeking anything familiar and relaxing. The more stressed I am, the more likely I am to shake. Without realizing it, I must have been shaking rather obviously during the evaluation. I’m not sure what I said, but it seems to have been self-deprecating. That phrase, “self-deprecating,” appears several times within the formal assessment report. This is an issue that appears throughout this book, as well. 
I have no doubt that my medications for pain, migraines, and tremors slow my performance on any test. I sometimes feel as if I am moving in slow motion, then I realize I am moving or thinking slowly. Thinking slowly and believing that I am unable to interact well with people leads me to avoid social interactions, which are mentally demanding. 
“Lousy guest at parties and social gatherings” isn’t technical enough, so psychologists write things like this:
Facility for social interaction is hampered with flat affect, limited eye contact, and compromises relative to the understanding of subtlety and nuance. S. encounters difficulty with “theory of mind,” understanding what others are thinking. He is literal in response, experiencing reduced self-monitoring skills, thus, at times, verbalizing impulsively. Concomitantly, cognitive rigidity is evident with a good deal of literalness, misunderstanding of the theoretical and esoteric, and a strong need for logic, structure, and clear patterns. Thus, “gray” situations at all levels can create uncertainty and anxiety. Paradoxically, at the same time, S. can be highly creative, displaying strong writing skills. Further, as at times noted in such instances, sensory sensitivity is evident, exacerbated by apprehension.
Yes, my “theory of mind” is all mixed up. I don’t understand how people think, why people play emotional games, or why honesty is only sometimes the best policy. I’ll also never grasp how people manage to enjoy sunbathing, nightclubs, or wool clothing. Humanity is a mystery to me, but an interesting mystery. That’s why I write.  
With respect to attentional/executive skills, S. displays a number of limitations, which, as noted, are frequently seen in conjunction with this type of trauma. Facility for speed of information processing is lower (and task execution certainly confounded by the fine motor issues). Efficient recall of new incidentally presented material can also be problematic for S., as well as skill with rapid retrieval of information. Thus, his complaints regarding memory reductions are legitimate.
Because it takes a long time to interpret idiomatic speech, body language, and social rituals, I prefer to remain in the realm of facts and figures — except when I can view humanity as a research project. If I can remain hidden, recording the wildlife in their natural habitat, I’m much more content. 
Needless to say, S. displays numerous strengths, being most comfortable with concrete, clear-cut, factual material. His long-term memory is excellent. Facility for numerical analysis is quite good, and he does especially well with arithmetic conceptualization. Generally speaking, he is more comfortable with logical technical pursuits, doing well in terms of visual detail, spatial processing, and abstract visual perception. Certainly, his general reading skills are intact, and he displays strong writing capabilities. 
 The problem with having a bias towards hard science, with clear facts and the underlying organizational power of mathematics, I expect my life to be organized and predictable. When things go wrong, I often panic. I don’t like to make mistakes and expect more of myself than I would of most people. If I am smart, as many “experts” claim, then I should be able to accomplish more, with better results, than most people. So far, I haven’t done much of anything.
Clearly, the social/pragmatic limitations associated with high functioning autism have impacted S. emotionally. Coping skills, for purposes of allaying anxiety (secondary to misperceptions) have entailed a predictable, structured, and isolated lifestyle. Defensive responses related to control have become quite evident with perfectionism (including obsessiveness) and the need for clear, logical, literal, structured explanation. Thus, through time, S. has engaged in significant self-criticism and personal questioning. 
The neuropsychologists prepared a list of suggestions for the University of Minnesota’s Disability Services. Since it was DS that originally suggested the new assessment, this list seemed to me to be the primary purpose of the exercise. I did not seek most of the recommended accommodations. Some of the suggestions in the report include:
In the educational realm, keeping in mind S.’s highly complex neuropsychological profile and providing him with accommodations. Specific suggestions include: 
Involvement with a cognitive strategy specialist who can provide guidance and support and additionally act as a liaison for S.. 
As S. does well with logical, analytical pursuits, planning for involving him in these specific endeavors, which are very analytical and didactic, through research and teaching. 
Hand selecting professors / instructors for S. who can provide support and flexibility, accommodating his thinking patterns. 
Of course, remembering S.’s significant fine motor issues, offering assistive technology as a compensatory tool. 
In conjunction with the above, using a dictation format for writing, as well as voice activated software. 
Enhancing organizational skills with persistent usage of a PDA (for planning) and notebook computer (for note taking). 
Keeping in mind slower information processing and performance speed, allowing more time for test taking, academic as well as standardized. 
Offering examinations in a quiet and private setting. 
Of course, as much as possible, providing written instructions / directions and class notes. When appropriate, providing a note taker. 
Secondary to S.’s tendency toward boredom and inattention, making sure the learning environment is reasonably distraction free and providing preferential seating. 
Because of variable memory skills, supplementing the auditory with visual input. In learning to consolidate new information, in addition to providing reiteration, supplying clues and cues, as well as making clear applied comparisons and practical generalizations. 
Again, due to temporal difficulties, providing assignment modifications with longer and more complex projects and/or extended time lines. 
To enhance reading comprehension, considering a Kurzweil scanner (see attached). 
Within the university setting, aligning S. with an advisor or guarantor who can provide routine monitoring and feedback, as well as guidance for teacher and course placement. 
After reading what doctors had to offer in terms of a diagnosis and suggested accommodations, I was surprised the person they were profiling had any success at all. I had to remind myself that they had evaluated me, not someone else. However, don’t know that the evaluation had much of an effect on my experiences at the University of Minnesota. My graduate experience was only slightly different from those of other doctoral students: I dropped some courses I didn’t enjoy, took courses I knew matched my personality, and shuffled my dissertation committee twice. I was one of the few in my cohort to graduate in four years. How “different” neurologically could I be?  
My wife is quick to answer when I suggest I’m not different. She insists my brain is different, because she’s talked to the doctors and remembers more of what they have told us. I’m not “normal” no matter what I sometimes want to believe. In her view, the neuropsychologists were simply reiterating what previous doctors had suggested when the lead psychologist bluntly stated, “You are a high-functioning autistic. You meet the criteria.” 
No matter what label is affixed to my medical files I am first and foremost a writer. Maybe it will be possible to make a difference being both a writer and a person with autism. After the evaluation, I had to hope there was a purpose for this information. 
#
There was now an official label on my difficulties. I was relieved, depressed, curious, and frustrated. I did not want the label “autistic” and yet it also explained many of my own observations. My wife had no doubts at all and neither did Lisa. Actually, I think I was the only person voicing any doubts, wondering if some other label might be found. There is a stigma to autism — I know, because I had several prejudices concerning the word and the condition.  
With respect to high-functioning autism, S. displays a number of salient characteristics.
 Autism. The word changed my life. 

Undecided
Is “The Autistic Me” an accurate description of some part of me, or the result of ever-changing trends in diagnostics? 
I anticipate the nuanced answer I offer is going to be taken out of context and misrepresented by some people and groups. That’s simply the nature of autism debates and discussions, in which the integrity of every advocate is challenged by someone for some reason. Though I assume being frank will open me to some criticism, I believe I should offer the nuances of what the “autism” diagnosis means to me. And so, I offer the following disclosures: 
Nuance 1. Psychiatrists, psychologists, neurologists, and schools have applied different labels to me. Only two university Disability Services’ advisors have suggested Asperger’s Syndrome, while two neuropsychologists and one psychiatrist have used the designation High-Functioning Autism in writing. Apparently, HFA is not a consistent category. One assessment assigned a diagnostic code of “299.00: Autistic Disorder” and another used DSM code “299.80: Atypical Autism.” There is something subjective about the diagnoses.
However, the 2006 report also emphasized my “complex history, driven by significant physical trauma at birth.” Before 1999, no health care professional used the “autistic” label to describe me. This leads me to lean towards the “299.80” designation, which is “Pervasive Developmental Disorders” (PDD) including those “Not Otherwise Specified” (PDD-NOS). 
The problem with me deciding between 299.00 and 299.80 is that I am not a psychiatrist or psychologist. I have not been trained to administer and interpret test results. I just happen to prefer, emotionally, not being diagnosed with “Autistic Disorder.” This also means I am admitting to being uncomfortable with the diagnosis of autism, no matter which category is used. Admitting discomfort places me at odds with those individuals embracing diagnoses of ASDs. 
Nuance 2. Because I was diagnosed with “brain trauma” and “seizure disorder” early in life, some suggest autism is an invalid diagnosis. The DSM and ICD do state other developmental disorders should be eliminated as possible diagnoses, but physical injuries and other causes are not explicitly listed as disqualifying an autism spectrum disorder. 
If my injuries caused my autistic traits, that also required I accept that autism can be caused by external factors. At the same time, I also believe most autism diagnoses are genetically based (but not necessarily hereditary). Genes experience random errors during replication. These errors seem to increase the likelihood of a child developing autism. What if I have a genetic predisposition towards autism, and the birth trauma was simply that extra “bump” into being autistic? I admit I have clue what made me whatever I am. 
Nuance 3. The criteria for diagnosis require specific traits be observable and quantifiable. There are people with “autistic traits” who are not autistic according to some clinicians and researchers. One missing checkbox in the criteria and the child has some autistic traits, but not autism. 
Like many diagnosed with either 299.00 or 299.80, which will be merged to some extent in the DSM-V, I have bad days and good days. If I’m evaluated on a day when I’m stressed and have been over-stimulated, then I’m going to meet the diagnostic criteria easily and obviously. On a good day I might seem almost completely normal. My wife or family might notice the little things, and a well-trained clinician should notice them, but not everyone would. 
Part of me wants to believe the Wechsler intelligence test and the other instruments used to categorize me are slightly more reliable than phrenology. Okay, maybe significantly more reliable than phrenology, but that’s open to debate. What I don’t question is how the results alter the courses of lives, especially when our educational system places students in programs based on the results of intelligence testing. The evaluation in second grade certainly affected my life by increasing the supports I received from Visalia Unified School District. The VUSD resource specialist, Mr. McC, changed my life.  
The observations by the evaluator can be interesting — much more interesting than the test itself. Maybe a strong defender of IQ tests can persuade me that my perception of the tests is misguided. Yes, intelligence is reflected in the results, but they also reveal cultural awareness and familiarity with a vocabulary. What about a smart person, even a genius, who hasn’t seen or heard some of the vocabulary? You have to have been taught certain skills to perform well on the assessment. 
So, I am a skeptic. And maybe I’m also in denial. 

Stuart Duncan: Father and Autism Advocate

As readers of this blog know, I try to keep this blog personal because I only claim to know and understand my personal experiences. I'm not comfortable straying far from what I know. However, there are a few voices I believe my readers should hear and read if they want a better understanding of autism spectrum disorders.

Stuart Duncan is a father of two sons, one with autism. He also has a wife with some physical challenges. You can read his reflection on autism at his website:
Autism from a Father's Point of View: http://www.stuartduncan.name/
Follow Mr. Duncan on Twitter: http://www.twitter.com/autismfather
Everyone should spend a few days (and yes, it will take you days) reading the blog and information posted by Mr. Duncan. He has provided a frank and detailed account of life as a parent to an autistic child. It is the single best parent-authored website I have found. I don't say that lightly, because there are many thoughtful blogs by parents. Unfortunately, there are also some bitter, angry blogs by parents.

The following email interview asks questions I've wanted to ask Mr. Duncan. I hope these questions help others understand his experiences as a parent and advocate, too.
Q: You write of the sacrifices made to ensure the best in services and supports for your son. Some parents at conferences tell me these sacrifices risk causing a sense of resentment among friends and family. You seem to have dealt well with these stresses. (I'm not a parent, admittedly, and don't always comprehend what my parents did. I do try to appreciate their sacrifices, though.) What would you tell other parents about coping with the emotional, physical, and financial costs of autism?
A: Well, first of all, it's true that it does hurt your friends and family. My mother hasn't seen her grandchildren in over a year because we moved too far away. But she understands too. She understands that she shares in our sacrifices. It's not just me that wants the best for my children, my friends and family do too and if that means that they almost never get to see us, then they are willing to do it. And to be honest, if they're not willing or able to understand and make those sacrifices for the better of your child, then you have to really consider if they're worth sticking around for in the first place.

When I tell other parents about how we sold our house and moved far away, almost every single person's reaction has been "well, we could never do that." I can't help but wonder why these people think it was any easier for me to do than it is for them. I mean, I lived close to family, all of our friends were there, my boys had friends there.. we owned the house, my job was there. On top of that, we had no money. Seriously, it was NOT an easy decision and it was an even harder thing to actually do. Friends helped pack our house for free. Friends helped pack the moving truck, for free. Friends took our furniture, BBQ and other items that we couldn't bring. We literally got here with next to nothing, having to take hand me down furniture or buy $100 stoves in yard sales.

What would I tell other parents? Stop making excuses and make the sacrifices. It's never easy and it's never easier for someone else to do. So when you see someone else do what you wish you could have done... don't make an excuse, do it.

My son is doing so very well. And it's because we made that decision and made that move. Instead of saying "we could never do that".. we did it. It was the best decision we've ever made.

Q: How did friends, family members, and colleagues react to learning your son was autistic? Is the education process ongoing or did some people decide they didn't want to understand?
We have, as I suspect many people do, some family members who reject what 'those doctors' say. They don't believe studies and they don't believe the latest "fad problems", as they put it. And so, for a long time, we had people telling us that our son was fine, he just needed more time.

There's generally 2 points, I've found, where family and friends have that "ah ha!" moment. The first is when they get to spend the day with us. Not just an hour or two, but a whole day. And you spend that time with them and show them the things they've been missing. Not just the delayed speech or repetitive behavior (because these things can happen to any child) but when you point out those with all the other things through out a whole day, you can start to see the pieces fall into place in their heads.

The second point is when you sit them down to watch a movie like Adam, Temple Grandin, Loving Lampposts or some others (NOT rainman!). Quite literally, after my sister in law watched Temple Grandin, she broke down crying, saying "I'll never force Cameron to hug me again!"

She really got it.

We've made it a point to try really hard to make sure all of our family see the films and spend a lot of time to understand him. And of course, I'm a pretty vocal advocate so I'm always trying to drive the point home, subtly. You know, once in a while mention how each child is different, how Autistic children are vastly different from other children and so on.

We still get the occasional "are you sure he ever really did have autism?" question, or something along those lines, because he's doing well now and those people tend to only get an hour or two with him... it can be frustrating. On one hand, it's a compliment towards Cameron's progress and hard work as well as our hard work. At the same time, it's a slap in the face. But they mean well so you have to accept it for what it is.

Q: Did other parents offer you lots of advice on which treatments and therapies to seek? How did you sort through the advice to decide what was worth investigating?
Oh yes, and I still argue that this is the biggest strength and weakness of the autism community, is it's passion. When mama bears (and dads) are taking on the world for the sake of their child, there is a lot of passion there that helps them to move mountains. The problem is... are they moving the right mountains?
Unfortunately, there are a lot of snake oil salesmen out there... whether they are just in it for the money or they actually believe their treatments work, it doesn't really matter. Many times, these people (not always doctors either) come up with something they believe works and push it on parents that desperately need something to work.

You end up with doctors using chemical castration on children, electro-shock therapy and more.. but what's worse is that parents buy into it, do it and see results. They don't actually see results, it's just that their children are maturing and developing. But they believe it's the treatment through and through and so, with that mountain moving passion driving them, they don't just give you advice... they push it down your throat. You HAVE to do it!!

For new parents, or just cautious parents, this presents a huge obstacle. First, you try to believe the doctors but find you can't so you turn to your peers but it turns out that you're not going to do any better.
Unfortunately, the only recourse for people is to do homework and lots of it. Every time a doctor or fellow parent gives you a name of a drug, therapy, therapist or anything else that you can type into Google, do it. Do your absolute best to find all of the good about it, do your best to find all of the bad about it. Put it all into a pile and decide for yourself if it's safe, if it's a risk, if it's worth trying, if you can afford it and so on.

You're going to hear people push diets on you, oxygen treatments, drugs, specific therapies and so on. Some cost a lot. Some are very risky. Some don't actually even help at all. None of them "cure" but some do help some people. The thing is, no one treatment helps 100% of cases.

That means that even if you do find that one treatment helped 999 out of 1000 people you talk to, it might not help you. You're going to have to put in the leg work, do the research, do the trial cases at home (if you deem it worth the risk/price) and you're going to have to judge the results for yourself. There's no one else in the entire world that can do it for you.

Q: You website explains your "Autism: Awareness is Not Enough" campaign well, and you've created a Facebook group for Understanding at Acceptance: http://www.facebook.com/AwarenessIsNotEnough  
My experience has been that too many autism advocacy groups are unable to avoid contentious issues and end up "aligned" with one movement or another. How do you advocate without getting mired in these debates?
I refuse to take sides, always have. Must be the Canadian in me.

Autism is such a funny creature. It looks, smells, sounds, feels and tastes different to everyone. So why does it have to be that all autism is caused by genes, all autism is caused by vaccines, all autism is incurable, all autism is curable and on and on and on?

The thing is, you have to separate yourself from your own little world. Take a look around.
Yes, my son is doing well and I think he'll have a good adult life. Because of that, I would never try to take autism away from him. He does not need a cure. It helps to make him who he is and if he works hard, and I work hard, maybe it can even become a benefit to his life.

But it's simply not that way for everyone. For some people, it's very much a life long, life taking disability. Many people are never able to speak, use a toilet, feed themselves... should I hate those people for wanting a cure? No. My son is doing fine, that doesn't mean I have to push my opinions on them.
They deserve my help and my support. I'll gladly do what I can to help those people find a cure, if I can. That doesn't mean that I am forsaking my own child, it doesn't mean that I'm not happy with who he is or how he is.

The problem, as I see it, is going back to the passion thing. Once people see a cause, they attach themselves to it and then there is nothing else. It's only vaccines, it's only cure, it's only neurodiversity, it's only genetics, it's only environmental.... with people like that, you can see it in them. I've had one person talk to me about one thing, over and over and over... I literally said "can we talk about something else? Anything?" and they said no and unfollowed me on Twitter.

It's not that I didn't support them, it's that their mission wasn't my mission. My mission is my child and as an extension from him, all people with autism. Cure some, help others, empower others and give everyone the best shot at a good life that we can. If that means embracing and supporting all sides, that's what I do.

Because autism isn't black or white. There are no sides to a spectrum.

Q: You definitely love your son and have become a strong advocate for all autistics. When did you realize that your writings and public appearances were affecting larger audiences? Did that realization change your advocacy, as you were suddenly speaking and working for an entire community?
At first, my blog was primarily my son and I... talking about what we do, what I learn and so on. Along with that, I would have the odd post here and there where I share general thoughts. Something that I feel is insightful, educational... something we might all relate to.

Somewhere along the way, the blog has kind of flipped where I write mostly insightful/educational stuff and only occasionally write about actual father/son stuff. I still reference him all along the way because he's my foundation in learning/experiencing the autism world but more so, I write to the community now rather than just keeping a diary.

I'm not exactly sure when it happened though because it still seems rather surreal to me. When people message me or tell me that I'm inspirational or when they write about me as a leader in the community... I don't know, I have a hard time with that. I mean, I say thank you and all, but really, I'm just a dad... I'm just a parent like everyone else and I'm just a guy learning as I go, doing my best.

I don't really even see myself as an advocate, even though that's exactly what I am... but advocate, activist... it's not my goal. Being a parent is my goal. A fellow parent along with everyone else that needs some help, support and advice. I love to read other blogs, I love to ask questions. Many times, a blog post of mine is a result of a question I've asked. I write it after I get a few dozen or even hundreds of answers. I might have had a thought on it, but I didn't have the answers. Enough people inform me, I share what I've learned.

Which means we're all equals. I'm not sharing anything that people didn't already know. They're the ones who told me!

If anything, I think it's my ability to stay in the middle, to not choose sides, to hear out everyone and take the time to understand everyone's motivations that helps the most. When I ask a question, I don't dismiss the responses that I don't agree with or that I didn't want to hear. I include those in my posts.

That helps, I think, to relate with everyone that comes to read my blog. I might not agree with some of the answers I got, but it's not my place to tell them they're wrong. I include what they have to say.

Q: I suggest parents to follow your blog, your Twitter feed, and Facebook pages. However, I also encourage autistic teens and adults to read your page to better understand parents. What do you think autistics, including me, could better understand and appreciate when parents discuss autism?
Parents, for better or worse, are the gate keepers. No, we don't know what it's like to have autism or to live with autism, but we're the closest thing you have. Not doctors, not "experts" and not authors... but parents that live it second hand. We learn how to cope with meltdowns in order to teach our children to cope. We learn how to recognize what will cause over stimulation so that our children can recognize it and avoid it. We learn how to build routines for our children so that they can live with routines.

A parent is an adult, but a parent grows with their children. You become an entirely new person. You start as a grown up and over time, you become a parent. You develop a bond and understanding that is pretty powerful and even though you don't become autistic yourself, you come to know autism better than anyone else ever can without actually being autistic themselves.

The problem is that, as I said, autism is so very different from person to person that parents can forget that it can be so very very different for another parent and child. In their own way, they're doing their best and trying their hardest and they're fighting for you. Maybe they have forgotten that not every autistic person is a savant, or average or "low functioning"... maybe they forgot that not every child isn't exactly like their child is... but that doesn't make them a bad person, just a little misguided. Don't hate them. Their best intentions are driven by a lot of passion.

Most parents remember the differences, most parents remember that it affects adults and teens too. But we all stumble sometimes. We all forget sometimes. It's easy to become consumed by your own little world when your child is your world.

Please be patient with us. We're getting there.

Q: Autism communities divide along several lines, from "severity" to theories of causation. It seems many parents turn on each other at autism conferences and support groups. I've overheard some vile comments. Is there a way to bridge some of these differences?
My first attempt at bridging that gap was to have every single person in the community to write a common letter, where the last part of the letter began with "this is what autism is to me:" and they'd fill in the rest. The idea being that if hundreds of people read hundreds of letters... people would realize or remember just how extremely different it is to everyone.

Autism can be beautiful, ugly, a gift and a curse. It can be so many things to so many people. And we all need constant reminders of that.

Autistics need to remember that other people with autism are not like them. Parents need to remember that other parents have a very different situation with very different children.

We all have reasons for believing what we believe and feeling what we feel. No one has any right to invalidate that in others and to have it invalidated by someone who has no right.. is quite enraging.
Passion... our greatest strength.. our greatest weakness. Passion leads us to hate each other sometimes. It makes us stop listening to other people who don't share our passion.

We need to keep the passion strong, to learn, educate, support.... we can't stop listening. We can't judge each other. We certainly can't hate each other. That's not what passion is for. It's not what passion is about.

When you see someone make a hard decision that you don't agree with, instead of hating them for it, lend them a shoulder to cry on. You don't have to understand their decision to support them. Not understanding doesn't give you a right to judge them.

Isolation is not the answer. We need to spend more time together, more time listening to each other. We need to take the time to at least try to understand the things and people we don't understand.

Understanding doesn't mean we agree with it. You don't have to agree. Just take the time to understand.
When that happens, I think our differences won't seem so large and with more understanding, there will be less hate. At least, that's what I hope for.
I want to thank Mr. Duncan for his answers. He is busy with his own business, in addition to being an autism advocate. I know my readers also thank him.

Monday, July 11, 2011

Book Excerpt: The Autism Assessment, Part 2

Yes, more from the formal autism assessment report prepared in 2006. This is from a chapter in my next book, due in early fall. Please feel free to ask questions or offer suggestions. This book is still being written. Your input can help make it a better book!

If you would like to support this blog and my other projects, you can download my current eBook for Kindle or Nook.
A Spectrum of Relationships is only $2.99 on both Amazon and BN.com and I would appreciate questions, suggestions, and reviews while I consider preparing a revised "second edition" next year.

Now, on with the current book excerpts.


Quantifying Personality Traits
Recall that I mentioned the Wechsler Adult Intelligence Scale (WAIS) and the Wechsler Intelligence Scale for Children (WISC) are similar evaluation instruments. It isn’t surprising that the evaluation I received at the age of 37 would be similar to the one performed at the age of eight. The instruments have been revised several times, and I do not recall if the 1976 evaluation used the revised WISC published in 1974 or an older version. 
The materials on the shelf at the psychologists’ offices indicated I was administered the WAIS-III. The results, regardless of any biases in the WAIS-III, do reveal my weaknesses.
Statistical results from the 2006 and previous assessments removed. There are several tables of data I do not wish to post online. Some of the data will be in the eBook. 
My “processing speed” and “coding performance” are miserable. I recognize that a second percentile score is not top-notch, but at least it makes the processing speed look outstanding. What is coding? Should I even care? Has my lack of coding skill affected my life? If it has hindered me in some manner, I haven’t noticed. However, I do notice my mind is slow at times. I’d rather be slow and accurate than fast and sloppy.
He excelled with crystallized knowledge base (long-term memory). A high average score was revealed for numerical mental analysis with an above mean result in terms of verbal fluency.
I am certain my long-term memory is not that good, since it seems to have gaping holes. I theorize that the long-term referred to in this case is the time between test dates, which was one week. I definitely have a good memory for some things, especially words and phrases. Math also seems to be no problem, though I seem to have trouble remembering the quadratic equation and a few other simple things from high school. All those triangles with square roots get jumbled in my mind. If you don’t know what I’m trying to recall from geometry, it probably hasn’t affected your life, either. 
Visual working memory, however, was low average. He had the most significant difficulty with the coding pursuit (psychomotor speed with an incidental learning component). This general response is affected by significant reductions with speed/efficiency for new visuomotor learning/task execution, as well as visual working memory. Social judgment skills were additionally below expected.
The preceding is an interesting passage in the evaluation. My working memory (short-term memory) is horrible. I could have told the examiner as much without any test. It is the last line that seems a curious “tack-on” to the paragraph. I assume I said or did something during the block and peg portion of the test that indicated social impairment. I was definitely frustrated with the blocks, pegs, and checklists. There’s little to no chance that I didn’t tell the examiner I found the games annoying. 
On the California Verbal Learning Test-II, a measure assessing the various processes and strategies involved in learning and remembering verbal materials and using a word list format, immediate very short-term recall was more problematic for him, although ultimately he became more comfortable with repetition and cuing. Thus, facility for short and long delay cued and free recall was intact, as well as cued recognition memory. Upon being offered contextually cued material in paragraph format, responses were average for short-term and intermediate pursuits, although, on a recognition basis, some information was lost, the result borderline.
Lists of words were read a various times throughout the evaluation and between other tests I was expected to recite the lists either in order or in related groups. I do recall being more interested in the degrees on the wall and other items in the testing room than I was in the list of words. Why do I care about cucumbers and onions or zebras and elephants? I can tell you that the evaluator attended school in St. Cloud, Minnesota and that the young man in the waiting room during that part of the evaluation was quite ready to go home based on what I could overhear. I definitely lost focus. 
On the oral paragraphs, when presented with college level material, applied decoding was good and short-term comprehension at the 100th percentile. His facility for rapid word list retrieval was diminished, however, at the 24th percentile.
It’s good to know that a college instructor has a college-level vocabulary comprehension. But once again, I did poorly when time was an issue. Clearly, I don’t like to be rushed. Sadly, I don’t recall the vocabulary words. I do recall the two stories that were read to me. Four or five months later, I was still seeing a young man with his first job, excited to be delivering ice cream. Something is really wrong when I can recall images from the stories used in the evaluation but not what I read for class this semester. You probably don’t care about the fishing trip story… but I’m stuck with the images.
In the realm of mathematics, for the most part, S. excelled. His conceptual reasoning was notably strong.
At least I did fine in math skills. I love subjects with clear right answers; math is what it is. Yes, I know there are fields like set theory with more than one zero and strange results for matrices, but math still has rules. Language is changing daily.
After some statistical charts, more observations of the psychologists were included in the documentation. None of the comments were surprising to my wife, but I find myself disagreeing with some of them. My wife believes I’m simply unaware of how I talk or when I tremble. 
Right-sided tremors were apparent, and this condition precluded accomplishing a number of fine motor pursuits. Eye contact was limited, and initially, secondary to anxiety, S. presented with one-word answers. He became more comfortable with time. For the most part, affect was flat and he was nonsmiling, although he ultimately became more relaxed. Prosody was concomitantly unvarying. 
When I read how I’m perceived in the assessment, I do not recognize the person being described. My family certainly doesn’t consider me quiet, and I suppose it is possible that I forget that I tremor slightly until I need to do something requiring fine motor skills of my right hand. As for not smiling, I’m not sure anyone would smile during an evaluation.
Although S. occasionally offered a joke, he seemed to have little perception of humor. His understanding of subtle social interaction and nuance was compromised. For the most part, he enjoyed logic and analysis, being quite literal and, at times, “caught up” in the process of thinking. Some sensitivity to noise was also apparent. 
Maybe I was tense, but at least I tried to be pleasant. I wonder if some of my blunt statements were perceived as attempts at humor, though. I definitely didn’t perceive any humor from the evaluator or the test suite’s content. How funny can intelligence and personality tests be?
If anxiety escalated, extraneous motor overflow became apparent through tapping, pounding, and head tipping. Facility for quickly processing certain types of information was reduced, and there was response latency. Often, S. was quite rigid. He became frustrated when asked to elaborate. When pursuits became more tedious for him, he described distractibility and boredom. 
For the most part, S. was polite and respectful. There was a strong sense of self-deprecation, and he frequently alluded to his poor memory, also describing cognitive slowing (likely influenced by medication). 
Apparently, the noisier the testing center and the more stressful the motor skills test, the more frustrated I became. Feedback loops seem to be inevitable in life: stress causes problems that in turn beget more stress. I didn’t know I tilted or tipped my head, though.
It’s good that I was polite throughout what I considered a miserable experience. I tend to get terse and even rude when I’m doing something I have no desire to be doing. What kept me at the testing center, instead of walking out, was the knowledge that an “official” evaluation was required by the university — the same university that was paying me a fellowship. I also knew it was important to my wife. That’s reason enough to try hard. So, I did everything I could to be polite and complete every part of the test suite. Unfortunately, I wasn’t able to do every part of suite.
Secondary to S.'s difficulty with motor control, a number of motor tasks were omitted from the test battery. For example, with the spelling pursuit, he was allowed to dictate words and a handwritten writing sample was not required. Additionally, secondary to visual and motor issues, he was unable to complete a continuous performance test. The Wisconsin Card Sorting Test could not be accomplished, as he was unable to discriminate colors. 
The challenges with my right arm and other motor control issues would be an issue again during a 2008 medical misadventure. No matter how often I explain that paralyzed is paralyzed, several different psychologists have judged my performance using instruments that in no way accurately reflect my abilities. A physical, lifelong injury limits my arm’s mobility. That does not affect my intelligence, but definitely impairs my ability to write quickly or use a computer mouse with any dexterity. It is beyond absurd to judge my mental state by my physical limits.
I’m only mildly colorblind, but enough that on some computer screens I can’t discriminate between shades of blue and a green. By the time I was asked to sit at a computer and match colors and shapes, I was exhausted. My head was pounding and I just wanted to go home. But, I was willing to at least try the exercise. I politely suggested that I at least try to determine the colors, but the evaluator said that it wouldn’t really add to her findings. 
Generally, S. was highly aware of his difficulty. At the end of the sessions, he commented, “Thank you, I know I’m difficult and unusual to work with.” 
As previously mentioned, before being tested and evaluated, I was given a personality index questionnaire to take home and complete. 
S. completed the Millon Index of Personality Styles, Revised, for this portion of the assessment. He presented as a very cautious individual, avoiding problematic situations and distancing himself from difficult interactions. Generally, he is skeptical of relationships and minimizes his social discomforts. For the most part, he is quite preoccupied with his own inner thoughts and feelings. Life experiences appear to have taught him to rarely depend on others. In order to organize his life and gather information, S. turns inward, drawing inspiration and stimulation primarily from within himself. He prefers to keep his thoughts private and in factual and realistic ways. Thus, he is pragmatic, systematic, logical, liking the unambiguous. 
Occasionally I will sit and watch people, trying to comprehend human relations a little better. I spent a fair amount of time eating alone throughout the years, giving me many opportunities to witness how mean people can be to each other. Even polite exchanges seem to have dozens of imperceptible intentions, all interacting. I’ve mistaken the motives of acquaintances and strangers often enough to know it is better to watch people from a distance than to risk being mocked, teased, or used in a more devious way. 
I don’t tend to make up stories in my mind about what people are saying or doing. I never understood such exercises. If I don’t know what people are saying, what events have preceded an event, or other relevant information, it does not seem right to make up stories. People are more than the moments we witness. I know I’m more than the impression left on most people who meet me. 
He has a strong affinity for immediate, well-documented, and clear-cut disciplines and works at imposing structure on work, as well as personal family life. S. puts duty before leisure. In fact, he tends to react negatively if tasks appear too enjoyable. Becoming lost in minor details and exhibiting rigidity about established procedures and regulations is apparent. S. can lose sight of alternatives of potentially greater value (failing to see the forest for the trees). Usually, he is controlled and narrowly focused. 
Fun is a difficult concept for me. It isn’t that I don’t find some things pleasant or even exciting, but I don’t seem to have a list of things that make me “happy” on a regular basis. I know I like being with my wife, my cats, and interesting books. I have an affinity for water rides at amusement parks, which is hard to explain. I like cool water much more than I like the bumps and drops. Fun is important to me, but I do feel guilty when I take too many breaks.
I always seem to have a long to-do list. I wish I could complete many of the stories, plays, computer programs, and website ideas I have. It often feels like I have never accomplished anything. Maybe I haven’t accomplished much in life. I’m not sure how to measure such an abstract concept as “accomplishment” other than by counting words, pages, or dollars earned. I tell myself the concept of accomplishment is too vague to worry about, yet I feel compelled to do something with my life. This need for quantifiable success frustrates my wife.
Generally, his personality pattern is notable for noncompetitiveness, self-sacrifice, and social inhibitions. S. deflects attention away from himself, underestimating his contributions and achievements. Therefore, he will focus on his worst personal attributes, feeling that he has failed to live up to others' expectations. 
I’ll be the first to contradict the assessment and admit that I am competitive in my own way. I don’t like to fail, and I measure that by social standards and by the accomplishments of those with whom I am familiar. It’s hard to have a lot of self-esteem when you’ve had a series of failures. When I do look at what I have accomplished, it doesn’t seem like those things were particularly difficult or worthy of praise. Even as I consider commenting on the evaluators’ words, I think they are mistaken — I don’t have any achievements and I’m not clear on what my contributions to society are.
There is definitely a duality to my personality when it comes to achievement. I know that standardized test scores, IQ tests, and grades measure something and indicate a level of competence; at the same time I wonder what that competence does for society. The moment I start to think of myself positively, I critique the things giving me an implied value.

Sunday, July 10, 2011

Bad Memories, Strong Emotions

Working on my autobiographical book this weekend, I reread emails and notes from my four years as a doctoral student at the University of Minnesota. It was a horrible time and the challenge of writing about those experiences might be too much for me to tackle on some days. Sometimes events and people manage to leave deep scars.

I loathe the University of Minnesota. Despise isn't a strong enough word.

My department closed after we moved here. I was mocked by peers. I was bullied by faculty. If it were not for the efforts of a handful of individuals, I would not have graduated. Yes, there were good people within a lousy setting. It amazes me that some people can fight the system year after year and not surrender.

I will write the text, though it will be emotionally draining to relive those years. They are recent, and they haunt me some nights.

More text on my 2006 evaluation is coming this week. By the end of August, I might also post on the 2008 assessment nightmare. Yes, I had assessments while at the University of Minnesota. The story of the second is almost too absurd to be believable.

And yet, I guess I'm one of the people unwilling to surrender. For that, I thank my wife, P.W. in the Office of Diversity at "the U," and Lisa K. Without those three women supporting my efforts, I would have failed.

Saturday, July 9, 2011

A Note on Autism Assessments: Time and Money

In a previous post, I started to share the written report that followed my most recent assessment. I want to clarify some things based on private emails and the public comment posted.

Read the previous post at: Autism Assessment, Part 1.

First, and most importantly, even though my 2006 assessment was mere a "confirmation" for the University of Minnesota, it was neither a short nor an inexpensive process. The interviews of my wife, notes and comments from my parents, the interview with me, and the review of neurological exams required some time before the testing was performed. Reviewing records and interviews is expensive and time-consuming.

We even tried to locate a copy of the 1976 assessment. The confirmation for the U. of Minn. was required to either support or challenge previous assessments and diagnoses. The diagnostic criteria for various conditions and the evaluation instruments have been revised repeatedly during my 40+ years of life.

The actual exams are administered by three different individuals, not including the neurological scans and tests. You can see why this can be an expensive process with technicians, physicians, psychologists, and at least one psychiatrist (M.D. / Ph.D.) in mix.

The exams take days, and were not consecutively administered (thankfully). There were at least a dozen related appointments during the late fall months of 2006 before the written assessment was issued on December 4, 2006. Those tests are not cheap and insurance did not pay for everything.

By comparison, the local school district paid for any evaluations done in 1976. I wish that were available to all parents, but at the time I was listed as "birth trauma" and "brain trauma" in the student records. A brain injury, which is considered a physical handicap, qualified me for free evaluation. My parents probably remember far more about that than I do, since I was only eight.

I'm not sure what parents are supposed to do when a school or public service requires an updated or new evaluation. I'm sorry to report that I don't have any great suggestions. My advice would be to contact local universities with autism specialists. Maybe they know of free or subsidized assessment services.

Remember, a "school psychologist" is not the same as a clinician. The evaluation I received in 1976 would not and does not meet most university standards. I've mentioned this before: the educational standards and licensing are different for school support personnel when compared to practicing independent clinicians. That doesn't mean some psychologists are not employed by schools; you might be in a district with a licensed clinician.

I'll be posting more of the written notes from the neuropsychologist this week, but I cannot (since I wasn't there) write anything about the interview my wife had with the team or what other family members might or might not have reported to evaluators during previous assessments.

Friday, July 8, 2011

Book Excerpt: The Autism Assessment, Part 1

If you have wondered what a formal evaluation for autism is like, now you can read one. From my current book project, this my reflection on the formal assessment I received in 2006. The assessment is eleven pages, so there will be several posts including my comments.

A reminder that my overview of social connections and the autistic experience, A Spectrum of Relationships, is available on Amazon's Kindle store and the BN.com Nook store. What follows below is from my next project.

On Monday, December 4, 2006, my wife and I returned to the psychologists’ offices for the results of my assessment. My wife was already certain of the assessment results, while I was unsure of what to hope for. If something was “wrong” with me, would it be something horrible? If nothing was “wrong” then did that imply a different issue? It would be as disconcerting to have nothing diagnosed as to have something diagnosed. 
We were led into the lead psychologist’s office. Near her desk, relaxing in a small carrier, was a little white dog. I wanted to free the dog, but didn’t say anything. My wife and I sat down and the psychologist opened a folder with two copies of my assessment. The psychologist handed me one of the reports and then jotted some notes on a pad. She told us she was going to explain some concerns the evaluation raised, particularly issues related to my studies at the university. 
Whenever we’re in a bookstore, I’ll inevitably catch my wife reading the last few pages of a novel. I can’t stand the thought of reading the ending before the beginning of a story. A neuropsychiatric assessment is different, though. Of course I turned to the last page to read the conclusion. My wife was right and the results were exactly as she expected:
With respect to high-functioning autism, S. displays a number of salient characteristics.
The cynical me suspected it wasn’t a surprise that the neuropsychologists recommended by the university determined I am a high-functioning autistic adult. Part of me suspects mental health and medical experts have to find something to diagnose; the slightly less cynical me has to consider the likelihood that there is probably some truth in the diagnosis. 
There is something strange about reading a psychological assessment of yourself. It must be something like an out-of-body experience, though I’ve never had one of those. Part of you wants to deny it all, while you can’t help but occasionally say, “Wow, that’s just like me!” I feel the same way when I read a fortune cookie — sometimes silly sayings inside cookies can be right. I held the report in my hands, looking at it while the psychologist spoke. I wanted to play with the cute little dog and ignore the words being spoken. Of course, ignoring words is a special gift I possess. The dog was adorable. 
The report, which my wife has since filed in a safe place, is labeled “COGNITIVE NEUROPSYCHOLOGICAL ASSESSMENT” in all capital, bold type. Beneath the title are my name and the dates November 6 and 13, 2006. There are eleven pages in the folder, written in less than captivating prose. Business contracts are more compelling. At the bottom of the first page I read a single-sentence summary of what other psychologists and psychiatrists had included in my health records:
Various diagnoses have been offered throughout time, including bipolar disorder, obsessive compulsive disorder, Attention-Deficit/Hyperactivity Disorder, mental retardation, high-functioning autism, and Asperger’s syndrome.
Obviously these previous diagnoses were not in chronological order or “mental retardation” would have appeared first. Though I knew the story of my birth, seeing the word “retardation” in a report was a tad disturbing. Some of the comments I had not actually read or heard before, despite providing copies of some previous assessment notes from my own filing cabinet. Sure enough, a psychologist had written “OCD” on the back of a form. How could I be OCD if I didn’t read these notes when they were handed to me the first time? Wouldn’t a compulsive person have read every report at least once?
The last two items were why I endured the testing process. My research had taught me that Asperger’s Syndrome was an autism spectrum disorder. Some clinicians delineate AS from HFA and some do not. I didn’t like the sound of either. Wasn’t autism only slightly better than retardation? At the time, I would have rather been diagnosed with ADHD or even OCD than labeled autistic. I admitted in the introduction that my biases were from media depictions of rocking children, pounding their heads against walls. I couldn’t be like that. Worse, I had read that autism wasn’t something treated easily with a pill and a color-coded day planner. Autism is a scary word, like cancer or cauliflower. 
I experienced hope and dread simultaneously. If I was bipolar, it might explain my bursts of creativity. Was that better than autism? What sort of label was going to follow me through the remainder of life? Should it even matter to me? I thought about not reading any further. 
“Autism,” was mentioned by one of the women, either my wife or the psychologist, and I tried to tune in a bit more. I looked and the psychologist and then at the report. My wife was paying significantly more attention to the words being spoken. I was too anxious to think clearly, much less listen well. 
I read the report several times that night. I also made a copy and highlighted sections of the assessment for the Disability Services representative at the University of Minnesota. I did a poor job highlighting sentences, reminding me that a straight line is difficult to freehand. I decided it would be easier to make dots and lines in the margins to indicate what was important. I must have wasted 20 minutes or more developing a marking strategy. “Not OCD,” the doctor had noted. Was the doctor certain of this? I couldn’t highlight a page without frustration.
Personally, S. has always encountered intense anxiety. He has difficulty functioning in groups, as well as understanding social subtlety and nuance. A sense of rigidity is evident, and he tends to be very self-deprecating, internalizing anger. 
Intense anxiety? Check. My anxiety increased while reading the report. As a response to the stress, the teacher and writer in me wanted to edit the paragraphs so the content would flow better. The author, I assume the junior psychologist or the receptionist, jumped from topic to topic, which why this exploration of the assessment also flows poorly. Some genres, including most academic writing, aren’t as readable as they should be. Yes, I spent a fair amount of time critiquing the document. 
This paragraph as a list of traits meant to support the diagnosis. Ignoring the writing style, the analysis was reasonably accurate about group settings. I do not like working in groups and do not like social settings. But self-deprecating? Me? I always assumed I was being honest about my failings, which are many. Thankfully, people interpret frankness as a dry wit. I don’t mind being considered witty. 
By the middle of the second page I realized traditional “paragraphs” were not part of the assessment genre. I had an epiphany when I realized this document was similar to group projects my students submitted in class. The assessment report was two stream of consciousness works, dictated by the two psychologists and sloppily merged. I needed to let go of my editing impulse and read the document in chunks of sentences. This was nothing like reading a student essay; it was like reading a badly written corporate manual. I thought about cutting and pasting the document in a word processor, forcing the document into a more coherent order. Why not put everything academic in one section, for example? But, this was the document I had to decipher. 
Now that you know my internal thought process as I read the document, I am going to step through the assessment’s contents. Don’t blame me for the seemingly random order of the psychologists’ observations. After all, the psychologists recognized my need for order and routines. 
Transitions are problematic for him, and he does best with routine. 
Moving from California to Minnesota was more difficult than I had expected. Bad experiences at the university made the transition more challenging. I tried to tell myself that the move had been fine during the summer, but my wife reminded me that it wasn’t. I missed my routines, from specific radio programs to television shows airing at the “right” time, not the odd Central Time hour early broadcasters used. I missed familiar landmarks, too. Change was not easy. Having lived in Minnesota for five years, I can attest that I did not acclimate to life in the Twin Cities.  
He can be somewhat obsessive, especially with computer-based tasks, displaying some perseveration. 
In psychology, perseveration is continuing to respond to a situation or external stimuli long after the trigger event has ended. I’m assuming computer “situations” are the all-too-common hardware and software glitches we experience. I describe my approach to such situations as persistence. Isn’t that a good thing? I hate to give up, especially when my computer has a problem. I’ll spend all night trying to fix something on the computer, be it a hardware or software issue. The computer gremlin has to be defeated! Since switching to Macs, I don’t have as many opportunities to deal with software problems… but I did have to deal with a dead hard drive shortly after starting classes at Minnesota. Not much of a mystery or challenge. Replace the drive and you’re done, especially if you keep as many backups as my wife and I do. 
Stress leads to more than perseveration; it leads to migraines and memory lapses. 
Apparently, seizures affect short- and long-term memory skills. Of course, stress exacerbates symptomatology. 
I’ll be the first to admit that my memory has gaping holes. Under stress, I can’t recall my birth date. That’s not an exaggeration. I’ve been stumped by requests for basic information that for other people is deeply ingrained and immediately retrievable. Try being fixated on solving something, without remembering what started the chain of events or what the original problem to be solved is. I’ll be doing something diligently on the computer, and suddenly pause to remember why I’m performing the task.
Expending a lot of energy on a potentially pointless task is something I do too frequently. I don’t believe it is because I have the energy, so much as I lack the energy and discipline to stop doing something. Stopping takes more energy than continuing a task via mental inertia. 
S. attests to an extremely high level of mental energy. 
It’s either a high level of energy or insomnia. Is there a difference? When I cannot sleep, I might as well be working. Sometimes, I do sit and watch bad movies at 2 a.m., but more often I find myself writing, reading, or planning some grand project. My websites and blogs are products of many late night hours. Skipping ahead in the written assessment, the psychologists reference those long restless nights when I am most likely to experience the compulsion to write. 
At times, S. displays burst of creativity, writing books and completing plays and novels in his head. He frequently overanalyzes and worries. Further, he reports persistent “white noise,” as well as “blank periods.”
Because I can visualize complete stories in my mind, you might assume it would be easy for me to write them onto paper or disk. Words are not pictures, though, and sorting through a visual version to write a good story requires effort. Sometimes, I’ve managed to do that with minimal effort. I have sat down at my desk overnight and composed a complete play. But most of the time I think of the story and do nothing with it. I could tell the complete story to someone at the moment I see it, but I usually let it go away.
When I see a story, it is exactly like a movie. Initially, I don’t hear any dialogue, I only see the action. The result is that I can write descriptions of the scenes before I can write the dialogue. When I do hear words, it’s as if the characters are real, but on camera. Some writers hear the inner thoughts of characters — I have to add those later and always feel like I’m “making up” the thoughts, since you can never be certain what someone is thinking. I’ve visualized myself sitting at a coffee shop interviewing a character.
I never know what I am going to write. I see it, hear it, write it. The stories seem as real to me as any other memories. Because I keep the stories around me, often with multiple copies each in a different location, they probably outlast genuine memories. 
With increasing apprehension, he has learned self-calming techniques. Logical thinking skills are highly valued by S., and he is rational and at times very literal. For the most part, he does best with order and patterns. Mood swings can be severe. For the most part, he prefers being alone, doing well in confined spaces. 
The way I usually cope with stress is to run and hide. I’m not sure that’s the best technique in the world, but it does help me. When people aren’t being logical, that’s when I’m most anxious. I’ll abruptly leave a situation I perceive as illogical or disorganized. My primary goal is to avoid a complete mental meltdown or an angry outburst. I have no tolerance for ignorance or incompetence. It is best for me to walk away and listen to some quiet music with my head buried under anything that blocks the light. I can’t explain why I need darkness and calming music, but those things seem to help me cope with anxiety.  
The opposite of my creative periods are periods of nothing. I don’t get writer’s block, since I can always produce on deadline. I get the sense that I did something but can’t remember what. I’ll spend hours wondering what I was last doing and why. Try as I might to focus on homework, I get bored. Unfortunately, I also get bored in class. The psychologists wrote:
With many academic pursuits, S. is easily bored, frequently working ahead. He has problems with fine motor pursuits and directionality. Timed testing became problematic for him secondary to boredom, and behaviors ranged from impulsivity to obsessive answer checking. For the most part, S. has had low tolerance for the illogic and unscientific.
Boredom is definitely a problem. I was assigned “independent study” in elementary school, high school, and during my master’s degree, and once during my doctorate seminars because teachers didn’t know what to do with me. I have no idea why this trait would be grouped with my lack of fine motor skills in the diagnostic assessment. Maybe the connection is with timed tests, especially the sort with little “bubbles” to fill-in with a number two pencil. After all, I don’t simply check the answers — I check the neatness of the bubbles. 
Again the psychologists emphasize my lack of tolerance for the illogical and unscientific. I’m not one for myths, subjective opinion in grading, or superstitions. How can I teach English? I admit grading poses a problem for me, so I do emphasize grammar and mechanics. Grading student poetry would be difficult, since such grading is inherently subjective. One subject I have taught several times is academic composition: organization, logical reasoning, factual research, and so forth. No teacher can avoid bias, but we can do our best. As a student, I know what it is like to be evaluated on stylistic choices instead of content.