This is another blog on neurodiversity by one of our readers. I am hoping that this first person account, as well as others to follow, will promote more understanding among members of our autism community.
«The test of a first-rate intelligence is the ability to hold two opposed ideas in mind at the same time and still retain the ability to function.» – F. Scott Fitzgerald
For many years, I was a major neurodiversity advocate. I believed the old myths that Albert Einstein and Bill Gates were very similar to me, and that I would become one of them in the future. This was because I never got along well with people and wanted badly to make up for my social deficiencies.
However, as my life changed, it seemed that I was actually lacking many characteristics that they had. Contrary to popular belief, they actually did very well in school, but took alternative routes of their own willingness. Additionally, Einstein was active not in just physics, but in politics, social circles, and loved to play the violin. He had a strong work ethic and attention span up to his death, once saying, «Do not worry about your difficulties in Mathematics. I can assure you mine are still greater.» Bill Gates was very excellent in marketing Microsoft to the masses. Eventually, my own life fell downwards to the point where I decided to search for treatment. This essay is divided into three parts: my life, my experience with neurodiversity, and my search for treatment. Finally, I would say that in some aspects, my condition isn’t that bad at all, and that I have it much better than many. I can certifiably attest though that I am profoundly impaired in attentiveness, organization, and socializing.
Some Background on Myself
I am 22 years old, and was born on September 16, 1992. My dad is a math professor at a large state university, and my mom is a nurse practitioner. I learned to read earlier than most people, but was also a late talker. Because of this, I had supplementary speech therapy and social skills training. Back in elementary school, the work was low-effort and very repetitive, so I did well without much worry. I spent enough time on it only because I wanted to compensate for not fitting in. I wasn’t interested in sports, because I would get tired frequently. I really enjoyed basic arithmetic and basic algebra, along with world geography. What I liked about geography was that I always imagined visiting exotic, calm landscapes and observing historical architecture in distant lands. In fact, I loved studying about the world so much I once got ninth place in a state geography bee!! I only had a couple friends in my childhood, and we would usually be interested in video games and technology.
However, things changed in high school. Everyone was more concerned about popularity and social reputation, even other “outcasts”. I still stuck out like a sore thumb. It should also be mentioned that I had really bad coordination which I neglected to fix out of stubbornness and laziness, which made me look even more off-key. Additionally, I had to master as much as six different kinds of subjects that now had multiple dimensions of complexity. As a result, my grades slipped, I didn’t turn in countless homework assignments, and my parents would often accuse me of being willfully lazy for not keeping up, thinking that I had “outgrown” my past.
Sometime around my senior year, I read a tract by the philosopher Noam Chomsky where he said that he considered advanced trade work such as that of the auto mechanic to be intellectually challenging. When I told my parents about this possibility of going to trade school, telling them that I could make good money after 5 years of training and that there was an undersupply of people, they likened it to working at McDonald’s. After that, I learned about engineering careers, so I tried asking my parents instead if I could do electrical engineering and they let me.
College wasn’t that bad for the first 1.5 years. However, that’s because I found out that the courses that I took were “weed-out” courses, which had no real-world value. They were very effortless, with some classes having an average GPA of 3.5. I put in the effort into those classes to boost my self-esteem because I still had trouble socializing. As of now, however, I had never had an internship or job offer because social networking is the most important aspect, and I had no idea how to balance my life to include extracurricular activities and talk with recruiters properly. After the “weed-out” courses were finished, my grades started slipping again, and I would feel overwhelmed each time.
It was at this point where I realized that I needed to do some research on myself.
My Experience with the Neurodiversity Movement
I first learned that I had Asperger’s at the age of 15 during the summer of 2008. I discovered it on the internet, but I don’t remember how. I then bought the book «The Complete Guide to Asperger’s Syndrome» by Tony Attwood, an Australian psychologist. He speculated (key word, speculated) that Einstein had mild autism. This made me pretty obsessed with neurodiversity. I also discovered the WrongPlanet forum, a pro-neurodiversity forum, which just added even more fuel to the fire.
For a good part of the next year, I would often obsessively brag about how “special” I was to others. The problem was, I had nothing to show for it. As mentioned before, I wasn’t at the top anymore, and sometimes far from it, in STEM subjects. Basically, I annoyed a lot of people. Worse, I tried to get to know other autistic people, and they weren’t excited about like I was, namely because a bunch of them had worse academic struggles than me.
In college, there were two online classes that really excited me, which were basic physics classes. The problems that I had to do were “plug-and-chug” problems where I just plugged some numbers into a formula. I did well in those classes, but they required only a short attention span. This is in contrast to the real world, where I have to work with a variety of situations in every job, no matter the subject material. After that though, when I tackled the more multidimensional classes, some were effortless in terms of assigned homework but the really important ones weighed me down, even more than most other people.
Two things made me question neurodiversity: The first one was that when looking for an internship, which is strongly recommended for finding a full-time job, I needed to prove to the recruiters through submitting my resume and trying to schedule an interview that I had enough knowledge and experience. The “experience” part is the really important part, since that is what most employers are looking for. Even though I was good at doing arithmetic fast and “plugging-and-chugging”, it just wasn’t good enough. The experiences that employers are looking for require multiple areas of strength, far from just those which are academic. These include working with others and staying organized, both of which I’m horrible at.
The second one was that various neurotypicals (NTs) were easily doing better than me in various areas of study. I only realized it in the spring of 2012 because a teacher once said I was “breathing heavily” during an office hour. That could have been a really interesting point but he basically ruined it by saying that I should change my major entirely, because I was coming to his office hours too much. Now that was a really horrible thing to say, especially considering that I was doing slightly above average in the class. However, it made me consciously realize the first fact that I stated, that somehow I wasn’t doing as well as I should for all the hours I put in, not to mention that I sacrificed social networking for all this, which is harder for me and more important in the end. Additionally, I saw that the people that were doing really well weren’t socially inept at all.
I just would like to reiterate at this point that my situation is far milder than many. However, even if I were to switch to an easier major, I would still have the problems with time management, organization, and social skills, which are highly needed in life.
Nonetheless, I didn’t think that it was worth sacrificing. I took that summer off entirely and took only two engineering classes in the fall of 2012. However, that was a disaster because the teachers made the classes really hard. These classes, at least in the way that they taught them, were really abstract. As mentioned before, I like everything to be really concrete and practical. Additionally, the workload increased, which I couldn’t keep up with because I needed a long attention span. I pretty much broke down in both of them, leading up to the point where I just stopped going to one, and didn’t even tell my parents about. In that class, the teacher lied a lot, but the fact that I just couldn’t survive there anymore forced me to re-evaluate my position on neurodiversity.
Looking for a Treatment
The first thing that I did was to try to look for clear evidence that Albert Einstein and Bill Gates, two of neurodiversity’s great heroes, actually did have Asperger’s. I couldn’t find much evidence on the matter, but I did find the essay Undiagnosing Einstein, Jefferson, and Gates by Jonathan Mitchell. He actually made excellent points, contrasting them to his own life’s situation. While they had many autistic traits, they also had many nonautistic traits. I decided at this point to start searching for a treatment.
Thankfully, the next semester, I was in senior-level classes, most of which were “low effort” as students would generally take Senior Design, which is an intensive capstone course, and/or try to find a full-time job. I had discovered a book called Shyness and Love by Brian Gilmartin, a professor of psychology in 2011. I was looking for information for people that had significant trouble finding love. I also remembered that the unemployment rate for the people that he studied was five times the national average, despite the fact that most of them surveyed had a bachelor’s degree.
I hadn’t touched it in a while, but I remember one day that semester my mom mentioned something about how I had a stuffy nose. I consciously realized that I had this problem all my life. I remembered that Chapter 15 contained the physical symptoms of Love-Shyness, the name of the condition that he described. “Problems of the Nose” was the section of the chapter that said that improper breathing was the single best predictor of love-shyness. I was really excited, and made an appointment with my doctor. He confirmed that my nose was unusually stuffed, and gave me some sort of nasal steroid to treat it. The effect was only temporary, however. I found out that by pressing an ice pack to my nose would help reduce the inflammation.
During that time, I noticed that I had a peculiar dent at the top of my nose which I noticed that very few people had. I had seen a website during my research featuring people with more severe autism, and noticed that a significant proportion of them had unusual facial features (which I barely saw on the front page of WrongPlanet). I decided to do some quick googling and found a study correlating different facial features with autism from the University of Missouri. My face looked similar to theirs, but by that time, I had forgotten about pushing for treatment, as I was in my last semester of college and I was taking the intensive Senior Design course.
I only remembered this again in the Fall of 2014 because I was starting my master’s, and only realized again that I still had trouble being organized and paying attention. I basically didn’t do much in the Spring of 2014, so I didn’t feel affected as much. I went to a plastic surgeon in December and he confirmed that the renix, or bridge, of my nose was putting too much pressure on me and that it should be straightened for maximum comfort. I think that this is the next step I will take.
I suppose that some good and some bad came out of my different way of thinking. While it’s interesting being highly skilled in very narrow fields, in the end, I need to be organized, highly attentive, and verbally coherent to succeed in life. And indeed, it is highly possible and very common to be both. Quite the opposite, cases like mine are the exception, contrary to popular myth, if at all.
What I’ve noticed is that many neurodiversity advocates are far milder on the spectrum than me. Many have a close circle of friends, intimate relationships, and can pass for normal in public. However, I believe that this will soon change. Famous ND advocate John Robison for instance recently got TMS Therapy and really liked it. All throughout WrongPlanet, many people are subconsciously demanding change, wondering if neurodiversity is really worth it. Only time will tell what will happen in the end to autistics as a whole, neurodiversity, and myself.
*Content note: The following is my personal experience, and may not necessarily work for other people with Autism or Asperger’s, as there are many different causes and variations. This idea is based on several theoretical assumptions of mine. Make sure to follow all medical directions if taking nonprescription supplements, and consult with your doctor if necessary.
One study that I mentioned was published in the journal Molecular Autism which found differences in facial features between certain Autistic and non-Autistic boys (http://www.cbsnews.com/news/children-with-autism-have-distinct-facial-features-study/). One of those differences was a flatter and wider nose, which I personally have going towards the top.
My personal theory is that the flatter and wider nose makes it hard to breathe properly through the nose due to the pressure of the shape. The pressure is similar to what one faces when he/she is exercising. As a result, the body attempts to constantly relieve itself by sweating, which releases water and electrolytes. While there have been no formal studies on this, many autistics I know get frequently dehydrated.
I made this discovery by accident on the Fourth of July, 2015, when it was really hot where I currently live. As a result, I felt compelled to buy a large Powerade, which contains electrolyte supplements, and drank far more than I usually would. I noticed that compared to regular water, I became hydrated much faster. This came along with some other interesting changes.
Normally, my muscles are twitchy, but I suddenly felt that my muscle motions were smooth. It was far easier for me to sleep properly that night, and I felt like I was in a state of “peace and harmony”. I also felt like I was more internally organized. Before, my thinking would stall at certain points, and I would lose track of my thoughts. This still happens, but at a far less frequent rate. Also, I would have difficulty planning out my day, but now feel like I am more confident about the future and as a result, can plan ahead better.
I decided to expand on this discovery by purchasing electrolyte powder, and taking 1-2 packages a day, mixed in with water. To this day, I still feel far more organized and calm. The most externally noticeable change was a positive change in my diet. The body oftentimes mistakes hunger for thirst, so I would eat a lot of unnecessary snacks filled with sugar and refined carbohydrates as far back as I remember. I also tended to eat fast, as my mind tends to skip the “in-between” stages of a task, seeing something as all or none. Now, I only eat light foods, I don’t feel the need to eat snacks, and I eat much slower.
While the previous experiences have been anecdotal, I think that this is an idea worth studying and funding as scientific research. The face discovery was made only a few years ago, and in many cases, dehydration is often trivialized, as it is assumed that thirst is a reliable signal (http://www.diagnose-me.com/symptoms-of/dehydration.html).
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Yuval,you might be interested in some of the research about histamines in autism.There has been quite a bit of research done,Take a look at these blog posts.
You might want to try Claratin and Zrtec,and see if you get any benefit from them.Two readily available OTC drugs,that would be a mild intervention.
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