29 Apr 2007 #0717.html

Autism

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Dear Family and Friends,

Welcome to this week's "Thoughtlet."

These words are my personal diary and a weekly review of ideas, beliefs, thoughts, or words that will hopefully be of some benefit to you: my children, my family, and my friends.

"This week's theme comes from an e-mail I sent Andrea on Friday, the 20^th of April:

Sometimes it is easier for us and others to accept our weaknesses if we put a label on them. I recall the first time I heard the word autism used relative to me was in the conversation I referenced above by my friend Albert Boulanger. Albert and I were having a dinner and discussing things when he said, "Roice, I think you and I have something in common. I think we might both be slightly autistic." Albert is very smart, and so since that discussion I've always seen it as probable. Once I took Paul with me to visit my friend Bob Ehrlich. Paul had only been with the two of us for a short while, when he said, "You are like my Dad's twin." I'm not sure what Paul saw, and I still remember correlating that comment with Albert's comment, and wondering if there is something about autism some others are able to see. I know there have been several times (three that I can recall right) when I have introduced or met a Down's Syndrome child and immediately classified them as having the same issues Jeff Pack's teenage child had in Ipswich Ward when I was on my mission. A lot of friends and co-workers I've had the closest connection with over the years have had a similar characteristic, something I can't quite put my finger on, which might be related to what Paul saw in Bob Ehrlich. In thinking about this for a few minutes, these folks include Bill Bavinger, Wulf Massell, David Devor, Roger Anderson, Albert Boulanger, Bowen Loftin, Steve Joseph, Bill Bossler, Sam LeRoy, Bob Ehrlich, Doug Harless, Jeff Hume, Carolina Cruez-Niera, Don Vossler, Christian Singfield, Luis Viertel, and others. Of course, when it comes right down to it, the thing these folks have in common is we are geeks and nerds, and the connection most likely has absolutely nothing to do with autism.

Anyway, after George said this to me on the way to work, I went on-line and read the above referenced article (http://en.wikipedia.org/wiki/Autism) and sent the e-mail to Andrea. I was struck with how many characteristics described for autism I can correlate with my behaviors. I list them below and look forward to feedback and comments:

• A developmental disability that results from a disorder of the human central nervous system. (I think of the two times I was thrown from a horse and landed on my head.)
• It is diagnosed using specific criteria for impairments to social interaction, communication, interests, imagination and activities. (My introverted nature, issues with social interaction, problems with telephone communication, overly active imagination, etc. seem to fit.)
• They are diagnosed on the basis of a triad, or group of three behavioral impairments or dysfunctions: 1. impaired social interaction, 2. impaired communication and 3. restricted and repetitive interests and activities. (Andrea has pointed out how I can sit for hours and hours working on a Book of Mormon spread-sheet, or a geophysical problem, or writing thoughtlets, and yet I can not properly interact socially nor communicate well, especially telling you kids how much I love you.)
• Dr. Leo Kanner's first reports of autism emphasizing "autistic aloneness" and "insistence on sameness." (I am very happy with myself and being alone. It drove Marti crazy, and sometimes does the same to Andrea. I'm paranoid about what others think of me, and insist on being seen and playing a "safe" role of sameness.)
• The United States Centers for Disease Control (CDC) estimate the prevalence of autism spectrum disorders to be about one in every 150 children. (There is no question I was different from the other 162 kids in my High School Class [I went upstairs and counted from my Junior Yearbook].)
• Proposed factors include genetic influence, anatomical variations (e.g. head circumference), abnormal blood vessel function, oxidative stress, and vaccinations. (Again, remember the horse wrecks and my hat size.)
• In 1943 when psychiatrist Dr. Leo Kanner of the Johns Hopkins Hospital in Baltimore . . . suggested the term "autism" to describe the fact that the children seemed to lack interest in other people. (I am interested in other people, and yet I don't notice if left alone.)
• On the surface, individuals who have autism are physically indistinguishable from those without. (I seem to fit into society.)
• Individuals diagnosed with autism can vary greatly in skills and behaviors, and their response to sensory input shows marked differences in a number of ways from that of other people. Certain stimulations, such as sounds, lights, and touch, will often affect someone with autism differently than someone without. (There is no question about the fact I am visually dominant in everything I do.)
• (Selected) noted behaviors in children (which I see as relevant, even at age 57):
  • Stares into open areas, doesn't focus on anything specific. (I recall my calculus teacher freshman year at the University of Utah,Dr. Scott, pulling me aside once and saying something like, "Roice, sometimes I am very worried about you. You can perform better than anyone, and then at times, you seem to go into a world all of your own, staring off into space, and you are not at all involved with the class or what I'm presenting.")
  • Cannot explain what he/she wants.
  • Doesn't follow directions.
  • Throws intense or violent tantrums.
  • Likes being in a place well known.
  • Is overly active, uncooperative, or resistant.
  • Doesn't smile when smiled at.
  • Has poor eye contact.
  • Gets "stuck" doing the same things over and over and can't move on to other things.
  • Seems to prefer to play alone.
  • Gets things for him/herself only.
  • Is very independent for his/her age.
  • Does things "early" compared to other children.
  • Seems to be in his/her "own world."
  • Seems to tune people out.
  • Shows unusual attachments to toys, objects, or schedules (e.g., always holding a string or having to put socks on before pants).
  • Spends a lot of time stacking objects, lining things up or putting things in a certain order.
  • Unconcerned about - or completely oblivious to - dangers around him/her (e.g., standing in the middle of the street without worrying about getting hit by a car).
• Many autistic children have bonded with their parents - and anecdotal evidence certainly supports this notion. However, this bond may be difficult for others to recognize because an autistic child's particular ways of expressing this attachment may differ from the patterns of expression used by their typical peers. (My relationship with my parents was different, though I largely attribute this to their issues, which I avoided by leaving.)
• An autistic individual may lack . . . interpretation skills, leaving them unable to predict or understand other people's actions or intentions. (I've always struggled with understanding others feelings and intentions.)
• Perhaps because their social surroundings simply do not "fit" them, many report inventing imaginary friends, worlds, or scenarios. (There is no question that I live in my mind and my projects and they are real to me and to no one else.)
• It is common for autistics to have difficulty regulating their behavior, resulting in crying, verbal outbursts, or self-injurious behaviors that seem inappropriate or without cause. (I certainly made a lot of mistakes raising my six kids. I have done better since Andrea has been with me.)
• Those who have autism may benefit from consistent routines and environments, and they may react negatively to changes in their surroundings. (True beyond coincidence.)
• It is not uncommon for these individuals to exhibit poorly modulated behaviors, increased levels of self-stimulatory behavior, self-injury, or extensive withdrawal in overwhelming situations. (Absolutely true.)
• Indicators of autism include . . . physical clumsiness or carelessness; poor body awareness; a tendency to be easily distracted; impulsive physical or verbal behavior; an activity level that is unusually high or low; not unwinding or calming oneself; difficulty learning new movements; difficulty in making transitions from one situation to another; social and/or emotional problems . . . (Wow! I still recall failing at Little League Baseball, being kicked off of the football team, and other failures which directly relate to these words.)
• Autistic individuals may sometimes also develop obsessions or routines around foods, restricting what is eaten to certain colors, textures or types of food. (True.)
• Some people with autism demonstrate advanced cognitive ability, but lack communicative skills or are not inclined to interact with others socially. (Does anyone else see a pattern here?)
• The child might be obsessed with learning all about computers, television programs, lighthouses or virtually any other topic. (I've almost copied the entire article up to this point.)
• Many "high-functioning" autistic persons, and autistic people with a relatively high IQ, are under diagnosed. (My IQ is 133, exactly the same as my sister's according to Mom.)
• Studies have found much higher prevalence in males at the high-functioning end of the spectrum. (I'm male.)
• Communication and social problems often cause difficulties in many areas of the autistic's life. (Yup.)
• It is often said that the Internet, since it is almost devoid of the non-verbal cues that autistics find so hard to interact with, has given some autistic individuals an environment in which they can, and do, communicate and form online communities. (Maybe this is why I continue to use the Thoughtlets as my primary means of communication with those I love the most, even though most of those I love never look at the Thoughtlets.)
• There are several places the article mentions things like genetic predisposition, and that those with autism to have more problems with complex tasks, such as tying their shoelaces or writing, which suggests that many areas of the brain are involved. (I think of Rob not being able to tie his shoes, and my never even knowing it, and wondering if this is one of the unintended consequences of carrying my genes?)

The May 15^th, 2006 Time magazine had a photo of a boy that looks like Ethan on the cover and the title "New Insights Into The Hidden World of Autism." Turns out I was catching up on tearing articles out of Time Magazine this week, and this was one of the magazines that came up. I reread the article, and made the following notes:

• Autism is increasingly seen as a pervasive problem with the way the brain is wired. The distribution of white matter, the nerve fibers that link diverse parts of the brain, is abnormal.
• Other classic symptoms - a lack of emotion, an inability to love - can now be largely dismissed as artifacts of impaired communication
• Autism is generally a lifelong struggle.
• About 1 in 166 American children born today will fall somewhere on the autistic spectrum.
• There is no question that the brains of young children with autism have unusual features. To begin with, they tend to be too big.
• More recent studies by Amaral and others have found that the amygdala, an area associated with social behavior, is also oversized, a finding Amaral believes is related to the high levels of anxiety seen in as many as 80% of people with autism.
• The brain's right and left hemispheres are also poorly connected. . . . What remains unclear is whether the interconnectivity problem is the result of autism or its cause.
• By and large, people with ASD have difficulty bringing different cognitive functions together in an integrated way. There is a tendency to hyperfocus on detail and miss the big picture. Coordinating volition with movement and sensation can be difficult for some.
• Striking up conversations with strangers . . . is an autistic person's version of extreme sports.
• A lot of autistic kids will eat only a few select foods, and many have difficulty sleeping through the night.

So, if any of this helps you put a label on our interactions, maybe it will be of some benefit. Like much of what I end up writing in these Thoughtlets, the words end up being for me, as much or more as they are for any of you. So maybe the label will help me understand myself better and hopefully will help me improve my interactions with others. Especially with the 10 of you and your spouses.

Back in the real world, and in too many ways, my job seems to becoming a joke. This pre-stack depth migration role does not fit me. It is hurry up and wait, and mostly it has been wait, since I moved into the group in November. While waiting for data to be resampled or reloaded, waiting for migrations to run, or waiting on the client. I don't like feeling like I'm not earning my salary. Of course, there is the fact the company has used about $100,000. worth of my Landmark license time, told me they are going to enter into an agreement to pay me for this, and this week offered me $2,500. after my split with II&T. I keep hoping things will turn around, or the right next opportunity will turn up, and it certainly hasn't yet. Oh well. I have spent some time working on "An Open Mind" while waiting, and I've been very open with my bosses about what I'm doing and why. Nothing seems to change, and so I have kept doing this more than I feel comfortable doing. Oh well!

Wednesday I pushed Nena Madonia for an answer, and Thursday evening there were two Fed-X packages waiting for me in the office when I got home. They were the manuscript, the large chart, "The Gods of Mankind," which I had sent to Jan Miller, and a very nice rejection letter. Needless to say I was very disappointed. I immediately sat down and wrote an e-mail to Roice Krueger, typing out the rejection letter for his review. The e-mail I sent said:

Andrea had a Relief Society meeting Thursday evening. So since I was home alone, I drove up to Arctic Circle and bought some fried chicken nuggets, fried onion rings, and a large heath blizzard. Is this an autistic reaction to disappointment, or what? I also sent a note about the rejection to Melanie, Rick Hawthorne, and Merril Littlewood. Melanie wrote back:

I exchanged a couple of e-mails with Rick Hawthorne. The first e-mail from Rick was about An Open Mind:

Interesting perspective. I'm probably too technical in what I've been writing, and maybe this was why Jan said it is for a niche market. The second e-mail from Rick regarded problems with honey bees, which is being traced to cell phone towers. Pretty significant stuff:

Mike Schoemann, my supervisor in the Pre-stack Depth Migration Group, and the third person in my car pool with George Schultz, had told me about the issue a few weeks ago. Rick's note got my autistic mind focused on the issue. Within a few days I came to the conclusion bee keepers need to build a new kind of hive, a hive covered with a metal geodesic mesh. The mesh would act as a barrier to the cell phone microwaves, and would still allow honey bees to go in and out of their hives and to the fields. It is worth a test, and I'm not sure who to even send a suggestion to. Oh well!

Saturday morning was mow the lawn time, once again. Seems to happen each week this time of the year. At 10:00 the Primary had B.O.O.T. Camp. B.O.O.T. stands for "Build Our Own Testimony." A lot of the primary kids did not come. Sad, especially because it was an extremely well thought out and worthwhile activity. I was one of the drill sergeants. My instructions were:

My kids were the only ones that messed up twice on where we were suppose to go next. I did not understand the simple instructions which had what the activity was across the top and what room to go to down the side, and our "Delta Company" was highlighted in blue as to which room to be in during which of the four periods. I went to the first column first, instead of to the room for the first rotation. I felt so dumb. Autistic, if you will. Relooking at the instructions, they were perfectly clear. Oh well! The kids had a good time, and I put photos I took of the activity at http://www.walden3d.com/photos/NottinghamCountryWard/07_CTR-8/070428_Primary_BOOT_Camp.

Since I had already had a shower, and since I had been working all week on the next section of An Open Mind, I stayed inside and finished converting to html and printing all of these pages. I finished printing up through page 167 with all of the associated references about 4:30 and took it over to Kinko's for pick-up at 8:00 PM after the two receptions we were going to Saturday evening. I got home from Kinko's just in time to get dressed up and leave.

The first reception was Susan Keller's reception and it was at the Student Ward on West Road. On the way, Andrea put on Joshua's friend's CD: "Songs of Praise" by Paul Cardall. Joshua did the graphics, a stunning outline of the tree of life with a single red apple and light coming from the tree, did the photography, co wrote "Worth of Souls," and wrote "Prodigal." I've listened to the CD numerous times since then, while commuting and whenever I'm in the Prius, and as I told Joshua, I consider this next to the Amy Grant Christmas albums with the song 'Emanuel" on it, in terms of music like this I like. For those that want good music to play I encourage you to get this album – or maybe not, maybe we will give everyone a copy this Christmas.

It was so good to see Susan Keller so happy. She always had a crush on Ben, and a couple of years ago she told me she was afraid she was never going to get married. I tried to set her up with Andy Schultz, and it never went anywhere. It has been a long time since I met Todd Staheli at the Manti Temple to go to her sister Heather Keller's wedding (../9921.html). I think this was the first time since that wedding I've seen Heather. This was when I gave Todd a copy of my songs, which Alan Peterson helped me record. I had not seen Eric for quite a while, and forgot he was married. I must have been on a trip when they had his reception. Eric made a comment that got me thinking, and so just before we left the reception I went over to him and said, Eric, talk into the video camera and tell my kids some of the things you remember about me. This is what he said:

The original video is at http://www.walden3d.com/photos/Recollections, although in the case of Eric, the room was dark, and so the video is black, and all there really is on the video is the sound of him saying the above words. The other photos I took at the two receptions are at http://www.walden3d.com/photos/NottinghamCountryWard/070427_Susan_Keller_Tyler_Camp_receptions. I liked this insight, to capture what the kids I have worked with recall about my efforts, a lot. So next we went to Tyler Camp's wedding reception. He married Steve Richardson's sisters daughter. What a small world. Steve Richardson was the Elder's Quorum President in Maplewood II Ward before I was. He was kind of stand offish when I said hi. However, his father-in-law, Leon Potter, grandfather of the bride, who grew up causing trouble in St. George with my Uncle Glenn and who has been on the High Council in our Stake, and I had a good conversation. Just before we left the reception I cornered Tyler and got his recollections. Tyler said:

Maybe it is autism, and maybe it is simply insecurity, but it certainly felt good to capture the comments of these two former scouts and to feel, at least for a moment, like I have contributed to someone else's life. I expect this will now become standard operating procedure at receptions and the like. We left this reception, which was at the Burgerner's Community Center, just in time to pick up the copies before Kinko's closed at 9:00 PM. When I picked up the copies I asked to see the manager, and he is only there until 5:00 weekdays, so I will go back Monday to talk to him about self publishing An Open Mind (see 0718.html).

Neither Andrea nor I were that tired, and Andrea did not want to sew and I had finished what I wanted to do on the computer, and so we decided to go see Nicholas Cage in "Next." Good action movie. I enjoyed the theme, and the struggle with time and space and premonitions and remembering the future. When we got home I was still wired, and ended up staying up and watching a new "Robin Hood" on BBC. This is becoming my favorite TV show. You know who is good and who is bad, and they have adjusted the stories to have relevance today.

I'll write about Sunday in the next Thoughtlet (0718.html), except for the following e-mail received from Ethan on Sunday:

I responded with:

I close with this e-mail specifically because there is certainly nothing in this wonderful e-mail from our oldest grandson, nor in any communications nor interactions with any of the other grandchildren, to show they inherited any form of autism. So probably this whole topic is all in my mind, the label is simply an excuse for my quirks and weaknesses as a person, and I really do not have some form of autism."

Since the 38th week of 1996 I have written a weekly "Thoughtlet" (little statements of big thoughts which mean a lot to me). Until the 43rd week of 2004 I sent these out as an e-mail. They were intended to be big thoughts which mean a lot to me. Over time the process evolved into a personal diary. These notes were shared with my family because I know how important the written word can be. Concerned about how easy it is to drift and forget our roots and our potential among all of distractions of daily life, I thought this was a good way to reach those I love. It no longer feels right to send out an e-mail and "force" my kids and my family to be aware of my life and struggles.

Everyone has their own life to lead, and their own struggles to work through. I will continue this effort, and will continue to make my notes publicly accessible (unless I learn of misuse by someone who finds out about them, and then will aggressively pursue a legal remedy to copyright infringement and I will put the Thoughtlets behind a password).

The index to download any of these Thoughtlets is at http://www.walden3d.com/thoughtlets, or you can e-mail me with questions or requests at rnelson@walden3d.com (note if you are not on my e-mail "whitelist" you must send 2 e-mails within 24 hours of each other in order for your e-mail to not be trashed).

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Copyright © 2007 H. Roice Nelson, Jr.