The Autistic Me

The lumbar radiculopathy, which sounds too much like "ridiculously" for me, hasn't faded completely. My left leg still cramps, tingles, and hurts with sharp pains. My mind remains cloudy, too, even as I stop taking painkillers for the back pain and a recent surgery. Efforts to reboot and get back on track intellectually, physically, and emotionally are off to a slow, grinding start. It reminds me of an old 80286 PC, the infamously confused Intel CPU that wasn't sure what it was meant to be. And this was before the "SX" fiascos, which wedded 32-bit CPU cores with 16-bit connections. The 80286 was supposed to be able to multitask, but design flaws resulted in a first-generation that was useless to operating system vendors. My back, my knees, my ankles are each making noises like those old computers. If I haven't already lost you as a reader, the basic problem is that my mind cannot focus on one task for long without exhaustion and multitasking see...

Trying to reboot as 2017 begins, I attempted physical therapy for my pinched spinal nerve. The therapy appointment lasted only 30 minutes as I discovered the horror that is electrical stimulation and heat on an inflamed spinal cord. Diagnosed with radiculopathy, a pinched and inflamed nerve root in my lumbar column, the treatment is physical therapy, anti-inflammatory medications, and time. My therapy schedule was to be every other day for six weeks. The first session began with the therapist measuring range of motion and asking the basic questions. How long have I been in pain? Since birth. No, how long has it been bad? Since birth. Doctors can dismiss it and people assume I'm okay because I walk about and work, but I am always in severe pain. My lower back, shoulder, neck, hips… they all ache. The brachial-plexus injury at birth, the years in a back brace, and somehow doctors still don't believe what isn't in an x-ray or MRI. I hurt. A lot. The therapist pl...

I've been working at my computer the last few days, while my limbs are in palsy mode and words take too much effort. When I am tired, it is difficult to control my body. Many autistics I've met tell me the same thing. This is also true for people I know with other physical challenges. I have a history of mild seizures, migraines, palsy, and other annoying physical challenges. And because I'm exhausted, these issues are starting to overwhelm my ability to focus. Worse, my heart sometimes races and "bounces" with an irregular beat under stress. The tingling sensations are unnerving, at best, and keep me on guard. The doctor tells me the tingling is from anemia, for which I've had to receive blood transfusions in the past. My body is often the biggest obstacle to following through with my ideas. Autism seems to come with more than one or two challenges. But, those challenges can be addressed. We can learn to navigate around our bodies, with some help and ef...

I'm in a lot of pain lately. Extreme pain, causing a noticeable limp, slouch, and squint. I've already been to a doctor and know what the issues are. I have two bone spurs in my left foot (sole and ankle) as well as a "wrinkle" in my right eye (again). The eye is out of focus, even with my glasses, and hurts. The result is headaches and migraines, which cause lights to seem yellow and other strange tricks on my mind. The foot is like having nails shoved to the bone. Obviously, it is hard to be "fun" and people friendly in such discomfort. To be blunt, I don't want to deal with anyone right now. I want the pain to go away. It isn't easy to teach, standing for 90 minutes, while wanting to scream in agony. Walking from my Jeep to my classroom and office is a miserable journey. I'm taking painkillers, but they wear off about mid-class. Maybe things will be better in a few months. I need to get into the doctors and address these issues over the s...

My goal with the new year was to be a bit more entertaining as a writer. It is hard to think about being entertaining when I'm sitting on a "gel pad" cushion with one foot elevated and typing with one eye closed. Any humor at that point is unintentional. I'm not doing well this week. Something is wrong with my left foot, so I'm limping again. I used the cane last night. My right eye isn't working either. With headaches, back and shoulder pain, blood loss, and more, I need a break. Pain won Tuesday night. I crashed and didn't crawl out of bed until 11 am on Wednesday. It is frustrating when my body fails me because the pain starts to interfere with thinking clearly. I tolerate the physical limits until my body interferes with my mind. Thinking trumps walking or seeing perfectly. I can deal with a limp. I cannot stand to sense my mind is clouded and unable to focus. I never like it when medications make my mind feel slow, and I really dislike it when p...

Driving is okay when there is little traffic and I know the route by memory. I do not like driving on busy streets or highways and I hate driving on narrow roads or in cluttered urban settings. I also hate, truly despise, highways or freeways without sufficient exits and places to turn around when necessary. I hate driving in Pittsburgh, enough so that I shake and get a headache after passing through the Fort Pitt Tunnel. I hate narrow, enclosed, claustrophobic tunnels. Two lanes, horns sounding, and tailgating. Horrible. Today, we drove to Cranberry. I hated the last trip there and needed two days to recover. I hate the fact beautiful hills are being covered with townhouses. Narrow two-lane roads are trying to accommodate a flood of new arrivals. Yes, the economy in Butler County is doing well, but the roads and spaces were never meant to handle so many people. We planned the trip ahead, knowing I hate the toll booths and most of the Turnpike, which is in a constant state of repa...

Tonight my wife told me that she has been experiencing stress, worrying about my health from afar. I have been having some minor health issues for the last month or so. Experience has taught us that I am not good at recognizing how serious an issue is or is not. I did go to a "minute clinic" after a week of coughing, and was diagnosed with bronchitis. However, other health problems have continued and I am set to see a doctor next week. One of the serious issues facing families of adults with autism is how to help an autistic person recognize and deal with health related issues. Because I am always in physical pain and discomfort is a constant in my life, it is challenging for me to recognize when a pain is something important. I have severe back pain and was even in a back brace as a teenager. I also have other injuries dating back to birth which cause shoulder and hip pain. For as long as I can remember, I have had headaches and migraines. With my complicated physical si...

This week's lesson is that pain is bad. I keep failing to learn that pain means something is wrong. Since I am always in some pain, I never seem to know when the pain is severe enough to take action. Today I went to the medical clinic because the pain in my left leg, and the corresponding limp, had become too much to bear. I was near tears several times over the last week. I've been hesitating to put any weight on the heel of the left foot due to shooting pains, but this has caused me to put too much weight on the front of my foot, leading to a pinched nerve. I've used a cane for many years. In 2008, an MRI found a little arthritis and the damage from a spiral fracture I suffered as a youth, but nothing to explain my limp. Today, the physician's assistant asked a simple question: "In 2008, did anyone look at the left foot?" No, they had not. The doctors assumed the limp was related to my previous injuries, my palsy, and scoliosis. Nobody paid much attention to...

When I am anxious, there are a few things that sometimes help decompress. These things do not work always, but most of the time they do. Because I don't like street noises, which are particularly painful, I seek out isolated park-like areas when I am not home. In Dallas earlier this year, I found several amazing park-like settings, include an enclosed mall with a duck pond and sculpture garden. Parks, arboretums, and gardens are followed closely by museums and galleries. The worst places for me are urban downtown areas. Even the park areas are often too close to the buildings and streets. If I am at home, I turn to cartoons and family entertainment, from Disney to Warner Brothers. I love films with a family pulling together in the end. How can you feel bad after a Pixar movie? Friends and family always win the day in a good movie. I do seal the windows, close the curtains, and drink herbal teas when I am at home and anxious. I do not want to think about where we live, which is much...

After so many stories about autism and genetics in the news media, a parent asked me "that question" yet again: Would I want to be cured? What if my "autistic traits" could have been prevented? I have answered this multiple times, on this site and elsewhere. First, my life is better than that of the vast majority of humans currently living or at most points of known history. Plentiful food, good shelter, and a relatively easy existence within the American middle-class. Any complaints are the result of not considering my good fortune to be born at this time, within this culture. What parents are really asking is if their children are in some way unhappy, displeased, bitter, et cetera, for as a result of existing with autism or any other disability. I have no idea how someone else feels about being alive. None. People I can't imagine have any problems take their own lives. People I would imagine are miserable keep fighting for each extra day. Physically, who doesn...

On LinkedIn, in addition to scam therapies and nutcase "cures" for autism, parents keep asking for ways to "help" their children "become normal." Some of this is a desire for a better life for the child, but there is also a selfish desire to interact with the child in a comfortable way. People don't like atypical minds -- we're uncomfortable. "Repairing" or "recovering" a child seems cruel to me. Let minds evolve at their own paces. And embrace differences, don't try to "fix" people who experience the world and process data in a different way. There are days when I have no desire, no energy, to speak. The effort to organize and prepare speech is draining, a conscious effort to assemble thoughts in a way others will accept and respond to -- like having to translate from English to Chinese. I have to mentally, often slowly, convert idioms and metaphors I hear into the visual "language" of my mind. Then, I h...

I hate the night. The insomnia I suffer slowly crushes the soul. It is an affliction that separates its victim from the normal members of society, a reversal of existence that leads to wandering at night alone and sleeping during the day when others are interacting. I read today that nearly a third of people in the United States are awake between midnight and sunrise. These are the men and women protecting us from harm, delivering the goods we buy, preparing morning foods, and so on. They are the swing and graveyard shift workers, the people who keep things ready for the sunrise. But I have no such excuse. I am not employed to work at night… though you could argue that no one cares when a writer writes or a scholar reads. I sometimes fear falling asleep. I always have, even before I began to have trouble with my eyes in the morning. It is illogical, I'm sure, but I have always worried that I might not wake. Or, if I do wake, that I will somehow have lost the ability to function. Th...

A few weeks ago, I pulled a muscle and the pain has been severe. Vicodin several times a day. Upset stomach. Lots of bed rest because moving was miserable. I'm finally starting to get back to moving about, with only minor pain in my right hip area, and my eyes decide to start having problems again! The base membrane dystrophy leads to minor tears and "erosions" of the surface epithelial layer. The pain is so bad, I have come close to fainting. To go from one horrendous pain to another is too much for my system. Feeling lousy leaves me impatient, annoyed, and in no mood for people. I need quiet, calm, relaxing surroundings. It's also important that the room be slightly dim since my eyes hurt so much. I'm normally light sensitive, but in pain I am so sensitive that any light hurts. I have the brightness on my computer down to "one click" above black. I have the volume of audio down to cat's whisper (though our cats are not quiet). Driving during the da...

Monday I have yet another (not so exciting) medical procedure. Yet, it isn't the medical procedure I am about to have that annoys me. No, what is annoying me are my eyes. While I'm about to have some internal issues checked and verified, it is the pain of my eyes that distracts me each morning. I have strange, curling eyelashes over my left eye which keep getting lodged under the eyelids. I then have to flush the eye with sterile cleaner. My right eye just hurts. A lot. it is the familiar pain of the "erosions" I have had for the last year or so. The eye tears, as in rips, not drips, causing excruciating pain and sensitivity to light. I'm already "hypersensitive" to the world around me. Having my eyes hurt like they have been makes sunlight unbearable. Even though internal issues can be serious, there are few things that hurt as much as a scraping sensation in your eyes. In general, I see doctors too often. As a result, I'm not exactly read...

I have been very sore and sensitive for the last few weeks. My back, legs, and hands ache. Unfortunately, this drains me of any ability to deal with things I dislike. Trying to start a cultivator, also known as a tiller, I yanked too hard just as the starting cable seized. This pulled my shoulder, ripped skin from my middle finger, and caused a shooting back spasm. I was already tense and unhappy with progress on the house, so this left me even more tense, more anxious, about the yard and house. I don't like where we live. I hate being semi-urban, living within Minneapolis. The disorder of urban life is hard on my senses, as it is. The fact our yard is yet one more thing that's disgustingly incomplete annoys me. We've already made plans to have the garage painted. The crew will prep it, let us repair some of the wood, and then it will be painted white. I am at least glad it is one less thing we will need to do. I hate seeing the peeling paint, rotted wood, split...

I have been fighting the side-effects of the cold weather this winter. After being hospitalized with a low blood count, a week of nosebleeds from the dry air is the last thing I needed. Yesterday, I was late to my classroom because I had a 30-minute (seriously) nosebleed. The blood loss left me dizzy and exhausted. Then, I had several incidents today. I ended up asleep on top of the bed for nearly three hours. My body simply gave out after so much misery. My left knee and left shoulder are very sore, too. I can't explain the knee issue, beyond slipping (but not falling) a few times on the ice. I catch myself, but it hurts. The shoulder pain is horrible. It's swollen, with a lump right near my neck. I have been told I also have a bursitis issue, which flares up in the cold weather. My skin dries out so badly that I have tried to use more lotion and oils. The problem is that I hate the sensation of the oily skin treatments. Plus, I end up with acne. My pores apparentl...

Today, December 15, 2008, I went to yet another neurological exam. Actually, it was a psychological exam, supposedly screening for seizure disorders (complex partial seizures). However, it was simply another bad experience with that vague semi-science we call psychology. I think about 20 to 30 percent of psychology / psychiatry is valid and useful. Certainly I don't doubt the existence of clinical depression, mental retardation, or even sociopathy. The brain is incredibly complex, though, and I think a dozen psychologists would offer a dozen "evaluations" of a given individual. (Honestly, I would prune the DSM -- not expand it. Too may things are now considered medical or mental health "conditions" needing treatment.) Today's exam relied heavily on the speed and accuracy with which I could use my right hand. The pain was excruciating during the exam, eventually becoming too unbearable to continue testing. As I mentioned before the testing, my rig...

My wife is probably the nicest person I know. Though she isn't outwardly emotional, she is kind, caring, and definitely patient with the world. It takes a lot of energy to put up with what is becoming a tiring few months. I wish I could give her a nice, long, vacation to relax -- but any vacation would be spent working on projects around the house. She's tolerated my complaints about eye surgery, my trip to the ER, my MRI and upcoming EEG exams, and all the testing yet to come in the next two months. While dealing with my medical (mis-)adventures, she's working full-time and taking three graduate courses. Personally, I'd be a walking zombie from exhaustion with her schedule. I'm tired of the medical exams -- no question about it. I'm tired of my eyes hurting, that's for certain. I've whined a lot about the pain, though I guess I've done okay considering the doctor literally scraped a layer (or layers) of skin from my eye. Honestly, it doe...

I had eye surgery October 1 and am still recovering. It is also likely that I will have another surgery, but hopefully that will wait until after I take my Ph.D exams. When the surgeon said the surgery and recovery would be "extremely painful" at least he told the truth. The eye hurts more than anything I can recall. How bad is it? I passed out from the pain during my first follow-up exam. I mean gone, as in no clear memory of the moments before I slid to the floor. I'll write a lot more about this, probably in my personal notes. A simple exam turned into an all-day medical misadventure. Plus, they cut one of my favorite polo shirts on the way to the emergency room. I liked it because it was a cream-beige shirt that worked well with black and blue jeans. My vision has been giving me headaches for a year, now. The surgery was to repair something called a "dot dystrophy" possibly caused by arthritis or a similar condition. So, now I need to plan visits...

This weekend hasn't gone well, from mid-Friday or so onward. Maybe earlier. My left eye is definitely out of focus, possibly causing my headaches and worse. I have made an emergency appointment to see the optometrist or whatever the "O.D." is at the university health clinic on Monday afternoon. I cannot keep fighting my eyesight, especially if that is the cause of my migraines. I was invited to interview for an after school science program in St. Paul. I was excited, but the weekend stresses and the general hassles of my upcoming schedule may require that I decline the interview. The university is unsure where my office will even be this year. Annoying. I thought part of my problem was a lack of social contact and mental stimulation. Being home alone day after day is taking a toll on me, but I also don't do well outside of the house in this relatively urban setting. I admit it — I want to be near malls and strip centers. I miss huge bookstores with ca...