The inner life of a person with Asperger’s syndrome is all but impossible for someone who doesn’t have the condition to understand. The following essay by Alec Brownie (MA ’12, BA ’09)—adapted from a piece he wrote in 2011 for an anthology celebrating the 20th anniversary of the Americans with Disabilities Act, while Alec was a master’s student at UB—brings us non-aspies as close to comprehending his world as we could ever hope to be.
Y NAME IS Alexander George Brownie (Alec), and I have Asperger’s syndrome, a high-functioning form of autism. Asperger’s syndrome is a social disability; as is typical of Asperger’s syndrome people, aka aspies, I am introverted, shy and have difficulty making connections with other people, and I have certain interests about which I can be encyclopedic.
Autistic spectrum disorders exist on a continuum. Autistic people are often labeled “high-functioning” and “low-functioning,” but these definitions are not concrete. Some autistic people have severe difficulties speaking, understanding what other people are trying to communicate to them, or even noticing that people are communicating, and are all but unable to grasp another person’s perspective or think metaphorically. They can become mentally disabled for all intents and purposes if someone cannot get through to them during early childhood.
Even with more “high-functioning” people such as myself, there is some barrier to picking up nonverbal social cues and knowing what is expected behavior. I also have some of the classic autistic problems with understanding or predicting the emotional states and perspectives of other people. For example, I remember an instance when I was extremely young and I hit Dad hard with my special blanket, thinking that he’d be pleased. In contrast, I find it very easy to imagine and analyze what television characters are thinking and feeling, to understand action and reaction, perhaps because acting and story progression are meant to lay it out. I am not restricted to only using or understanding literal language, but sometimes people, including my Dad, think I am being funny when I am being perfectly serious.
Overall, my parents are very understanding and supportive. Mom in particular is a bastion of support as well as love. She is the person I am closest to and has been my best friend over my lifetime. She is the one I talk to most regularly; the kind of talking that’s called “small talk” and “life stuff.”
Being a student is an important part of my personal identity. I have been a student at one school or another throughout all my life that I can remember. My family lived in Erie County while I was in kindergarten; then we moved to the city of Dundee in Scotland after my Dad, who is Scottish, retired from his position as a biochemistry professor at UB. I spent what would have been American elementary school years at Dundee High School. After four years, we decided to return to Buffalo. I began at Heim Middle School in 1997, progressed to Williamsville North High School in 2001 and then to UB in 2005.
We—that is, my family—were aware for some time that I was not a typical child. In Dundee High School, a professional evaluated me for Attention Deficit Disorder, given my “stimming” behaviors (rocking, humming) and the fact that my attention could wander to things completely unrelated to my environment; I would be distracted from what the teacher was saying by a thought that my brain was having, usually about either my favorite series of books or whatever my family and friends were planning. After a thorough evaluation, he decided I did not have ADD, but nonetheless gave us some Ritalin. I took it twice, but its only effect was to give me a facial tic for a few days.
When we moved back to America, there were difficulties in class. Heim was different from Dundee, where students took all their subjects from one teacher throughout the year. I did not feel comfortable at Heim, and I would periodically get up and step out of the room to walk in circles in the hallway to relieve the tension. Needless to say, this was unusual and disruptive behavior for a classroom, and I was temporarily home-schooled by tutors until I could sit in class without stimming.
Around Christmas, we met with Heim’s school psychologist, who hunted for a diagnosis for me and found that I had Asperger’s syndrome. This diagnosis was obviously correct; it fit me like a glove, and it was a relief to my parents to have an explanation and sources of actual knowledge available. I have to praise the local school system for being “with it” in this way despite their having no prior experience with Asperger’s. We were lucky, as just a few decades ago autism was all but unknown outside of certain professional discourse.
Asperger’s syndrome is considered the most ‘high-functioning’ form of autism, but that is far from saying I have not had a hard time. When I went to Dundee and Heim Middle, I was frequently bullied. I never seriously considered doing myself harm, but there were times when I was completely miserable.
I soon started work with a speech therapist to help me converse better, along with two other special education children. One was autistic, but more severely; he could only make incoherent noises, and they believed he had intellectual problems and didn’t remember things. I took it upon myself to disprove this part privately by asking him questions, to which I got correct responses (not in spoken words). The other boy was not autistic, instead severely mentally disabled. His behavior was sometimes annoying, but I understood it wasn’t his fault. Mainly, I felt sorry for him and glad I was not in his shoes, that I could think about and understand things, as uncomfortable as that is to say.
I had aides in most of my classes at Heim Middle. They took notes during my classes, because that was a big difficulty for me—I could take precise notes, but not quickly enough to keep up with the teacher. Generally, it was the precision getting in the way. Summarizing important points instead of exactly copying everything the teacher said did not come easily to me, and when I started trying the normal way of taking notes, not having a copy of every word made me feel angry and frustrated in a way that is hard for someone who is not autistic to understand.
Asperger’s syndrome is considered the most “high-functioning” form of autism, but that is far from saying I have not had a hard time. When I went to Dundee and Heim Middle, I was frequently bullied. I never seriously considered doing myself harm, but there were times when I was completely miserable. It continued into Williamsville North, initially unabated. However, it diminished during later years of high school until, by graduation, it was rare.
As predicted by people I spoke to, the bullying did not continue into college. Not having to expect daily attacks on my self-esteem has certainly improved my confidence; I am now used to this reality and it seems bizarre that it was once otherwise. Thinking of the bullies now, I hope they did not realize all the harm they were doing and have grown up to be nicer people. I always get a special pleasant feeling when a villain is redeemed, but it seems to happen more in stories than in real life.
ESPITE THE condition becoming more well-known over the years, many aspies go undiagnosed or misdiagnosed. In my senior year of high school I was in chess club and fantasy book club with another boy who demonstrated many characteristics of Asperger’s syndrome, and I told him so, but he had not been diagnosed. We’ve found it hard to locate support groups for autistic children locally. One, during middle school, was more for severely autistic children who were absorbed in their own play and had violent stimming episodes.
Nowadays, my social disability most commonly manifests itself as awkwardness in conversation, except around my parents. At home, I find conversation easy. With others, I am prone to saying “um” and “uh,” to pausing, and to second-guessing or qualifying what I say. I often do not come across as confident or decisive, which I would like to do.
Maintaining eye contact can also be a problem, although I do not have the strong aversion to it that some other autistics have. Making eye contact with a group is intimidating. Combined, these factors make class presentations a challenge. However, I learned to overcome the challenge for a field project in my senior high school English class. I rehearsed my presentation over and over at home with notecards, and thus gained confidence in the words. Best of all, I did not merely repeat mechanically during my real presentation, but improvised word choice and projected to my audience. I caught their attention and spoke to them rather than at them.
However, it is still not easy to achieve this state of confidence. I recently presented in class but completely forgot how helpful it had been before to rehearse. When presenting, it is often necessary to skip over less important things. The trick is to do this briskly, rather than going, “And um, uh … nevermind, now here ….” There were more pauses in this recent presentation, and I gravitated toward the teacher rather than keeping up eye contact with the group.
One form of conversation I have always been excellent at is telling another person about something I have been reading. As a preteen and teenager, I would eagerly and animatedly get caught up in telling people all the facts and details I knew about Greek mythology and the science of genetics, those being my two greatest interests. I made a big family tree poster of the Greek gods for the wall of my homeroom in Heim Middle. I also would tell people all about my parents’ occupations, our countries of origin and movement between them. I even go over detailed explanations of current events or scientific facts to myself internally.
This is probably something neurotypical people do, but it’s exaggerated in my case. It’s hard for me to know, and it’s also hard to describe the pleasure I get from explaining things, similar to that I get from interesting someone else in my own interests. I not infrequently use long words or terms when I speak, in fact I just now referred to BC as a “calendric acronym” on a wiki site, but I do so because it’s what I thought of to say, not to be snooty or impressive.
I should describe the discomforting sensation I usually get when people initiate unexpected communication with me, especially by asking questions. I want to say it’s like an assault, except that sounds misleading because it’s not in any way painful. It’s more like when you’re in bed in the morning, only just qualifying as awake, and someone shouts your name. My instinct is to withdraw, but I don’t truly want to be a social recluse, so I maintain the social contact, or “un-withdraw,” once I have had a second to think about it.
I have a good sense of humor, but it’s mostly my parents who get exposed to it. I find it more natural to say funny things around them than around others. Still, even my parents don’t hear the majority of jokes or hilarious dialogue and situations that enter my head. I have a very vivid imagination for pictures and sounds. I have been known to laugh aloud, long and hard, at something I was merely thinking about.
My difficulties in connecting are bilateral—sometimes I am approached and withdraw, but other times people don’t approach me or seem quicker to interrupt me than they would others. I think the autistic problems with “invisible” social cues work both ways; there is something I am not putting out despite wanting to, and so I can fail to register in some way and can be glossed over.
On the physical side of autism, my stimming behaviors include pacing, running around and jumping, as well as straightening out my fingers, bringing them together and shaking them. People would ask me what this last one means, but it’s just my reflex. I sometimes wonder why other people don’t run, jump and walk in circles; how, for any human being, it could not be a natural urge. Not because it’s so great, but because it’s so natural.
I tend to hum loudly while doing these things and to go into my thoughts. I hum in correspondence with the sounds in my thoughts. It annoys my parents, especially Mom, when I run around and jump on the floor, and historically it has irritated me to be interrupted if I was thinking of something wonderful or exciting. I have uncharitably thought they were not being accommodating, and I have insisted that the floor is not weakened and has always creaked, but recently I have set aside my stubbornness and admitted to myself that they would not complain unless my behaviors were genuinely annoying, and they would not be mistaken about the floor. I’ve been accommodating them since then by doing it only in the basement or outdoors, though it’s a difficult thing to “schedule,” so to speak.
I sometimes wonder why other people don’t run, jump and walk in circles; how, for any human being, it could not be a natural urge. Not because it’s so great, but because it’s so natural.
I have read that fine and precise motor control is common among autistics. Unfortunately, I am not so coordinated—if you look at my arms closely you will notice a light yet consistent tremor, and I frequently misjudge the distance between objects. I have a tendency to put things down too hard because the surface of the table is closer than it seemed, I often bump into things I thought I could just walk past, and although I am very good at making tea and coffee, a lot of spilling goes on. Occasionally, my hand flings out to the right or lets go of its grip and drops an object without my telling it to.
But, like other Asperger’s syndrome people, I have a deep need to feel in control of my environment. When I was younger, I resented someone else having the TV remote—when I cared about what we were watching. As you might imagine, the combination of feeling a need for control with collisions and a shaky grip can make me intensely frustrated. A worse frustration comes when machines don’t behave the way I want them to—sometimes I lose my calm and scream at them, repeating, “I hate you so much!”
While I like things organized and can spend hours sorting out a list, this applies only to things that really interest me and stick in my mind. I tend to make my lists over and over again, and play interesting TV scenes or bits of music with this same repetitiveness. Actually, my repetition of TV scenes stopped about a year ago, and of music greatly decreased several months ago; I have been making an effort and may have outgrown them. The urge to list when I have pencil and paper is waning, but still strong. On the positive side, when I am really invested in something I can keep at it until it is done, like writing a paper or pounding away on the treadmill. Dad used to call me a “trouper” when I was doing math problems into the night.
Although I can be comfortable with my own company, especially if I am keeping myself busy, I do not like the feeling of loneliness and do not think I would do well living alone. I don’t completely understand it, but I often imagine how a person I know of or a fictional character would react emotionally to something I see, hear or say, as though it’s not enough that it’s real life and it’s happening to me.
I have recently come to realize that I have obsessive-compulsive tendencies, which is why I have intrusive anxiety-provoking thoughts and the compulsion to address them by performing certain actions or obsessively figuring out exactly why they are unlikely. Relatedly, I get the feeling something is off if I don’t step on certain spots or look at things a certain number of times or from a certain angle. For a long time, I was clueless about this aspect of my life, and it caused me a great deal of stress. I recently did a Google search about unwanted thoughts and found Wikipedia’s “Intrusive thoughts” article. This article told me that the treatment method of choice is exposure/response prevention. The “exposure” part is to actively do things that trigger you. There is less opportunity for me to seek that, but I try to do the “response prevention” part, desisting from rituals, because they only reinforce the false idea that there is a real danger. The idea is to let the thoughts come and go without feeding them. Sometimes I falter, but I recognize that this is human.
One of the most freeing realizations in the world: There are many other people who go through the same thing. This fact makes it so clear that the perceived dangers from intrusive thoughts are not real but instead the result of an understood glitch—serotonin is not getting through to give the message that a train of thought is over. It literally feels like something is stuck in there.
Intrusive thoughts and intense nostalgia are more of a problem for me during periods when I feel low. I just came off such a period, perhaps influenced by the winter climate and my place of work being below ground (I am a student Web editor at UBIT). Making and worrying about decisions, thinking about all the conceivable factors that could make them right or wrong, can still be painful for me. Happily, for all its challenges, it is Asperger’s syndrome that is my main feature. I am not a true obsessive-compulsive and can only imagine how terrible it is for them.
AKING NEW friends is hard for me. I did have small groups of friends in all my schools before college. In both Scotland and America, my small group of friends was mostly girls. They were more likely to be friendly. Despite the many plusses of the university environment, it’s been harder to make friends in college and graduate school than it was in middle or high school. Before, I could count on lunchtime, Resource Room, Heim Time (a study period at Heim) or homeroom for seeing the same group of people on a daily basis.
I have always found it easy to make friends with teachers, and still do, perhaps because they are the central figure of the class, and perhaps because I ask many questions in class and many teachers like that. In Introduction to Anthropology, at one point I asked so many questions that other students expressed their annoyance. The teacher understood me and let me give a small presentation about Asperger’s syndrome that greatly helped my standing with the class.
I still have a childlike expectation that adults will be indulgent with me, and they tend to do just that, perhaps picking up on cues from the way I present myself. I say “adults,” even though I am nearly 24. I still think of myself as a teenager and it is hard for me to imagine myself as an adult. I have been told I look younger than I am as well.
I live at home, because our house is so close to UB that there seemed little point in taking up campus living. We do have some apprehension about the prospect of my living independently, but I am sure I could adjust if it was necessary. The main new responsibilities I would have are cooking (I do make toasties, tea and coffee), laundry (I do carry it) and cleaning. I figure most people transitioning to independent living have to learn these things. More intimidating is the matter of managing my own finances. If I were to take a step out of the nest while remaining in contact with home, I would prefer an apartment with a handful of friendly and reliable neighbors.
The urge to list when I have pencil and paper is waning, but still strong. On the positive side, when I am really invested in something I can keep at it until it’s done, like writing a paper or pounding away on the treadmill. Dad used to call me a ‘trouper’ when I was doing math problems into the night.
The prospect of apartment life is made less intimidating by recalling past times when I found picking up new skills to be surprisingly easy. We hadn’t learned how to write in my American kindergarten, so I was behind in that respect when I started at Dundee High. But I very quickly picked writing up. For several years, I found it difficult to type quickly on the keyboard, but I took a summer class during high school and now know instinctively where all the keys are. I have, for a long time, been too afraid of potential traffic accidents to learn how to drive myself, but I now think I should take lessons. My primary skills are in reading, organizing (of some types) and writing. I always get my academic papers done on time and get good marks, but more importantly I enjoy writing.
I find it hard to narrow down a focus in academia because I find so many things interesting. To illustrate, my major when I graduated UB was anthropology and my minor was philosophy, and as a graduate student I am in the English MA program. Biology, history and astronomy also fascinate me. The one thing I’m sure of for my future job is that I want to write. I’ve considered the possibility of writing informative articles or opinion pieces for a publication or an online blog. Dad sometimes suggests a teaching job to me, and that could also be interesting. I have many idea fragments floating around in my head for creative writing, but they have yet to coalesce into a cohesive story.
Over the years, I have taken an active interest in Asperger’s syndrome matters. For a recent course in the English program, Field Methodology, I chose for my research project topic the use of storytelling in education. I surveyed teachers from Heim Middle, Williamsville North and an elementary school where a neighbor works, and observed the orientation program for new faculty at Summit, the local center for children with developmental disabilities of many types. With the Field course over, I have observed Summit classes for my personal interest and enrichment. I spoke to the head of Disability Services at UB about forming a group for UB’s Asperger’s syndrome students that would meet semi-regularly. He agreed this was a good idea. I haven’t actually met any of the others, and I look forward to seeing a group of people with whom I have something in common on a regular basis.
In the coming semester, I am taking a course taught by a new professor in the English department (Joe Valente) called “Personal Narrative: Autistry.” We will be reading texts by autistic people and parents or professionals who work with autistic people. Temple Grandin is one famous Asperger’s syndrome person who is an autobiographical author. I expect heartbreaking stories of struggle from the parents and caseworkers, punctuated by encouraging if incomplete progress. In many cases, the challenges of autism cannot be overcome. In others, they can, and the course asks the question of whether it can still be considered a defect then, or becomes merely a difference. I don’t know yet if autistic studies could, beyond being interesting to me on a personal level, be a part of my future job, but the idea is certainly intriguing, and there is surely a wealth of options open to me in the future.
Since writing this essay, Alec and his parents have moved out of their old house and now reside in neighboring apartments—he with two tuxedo cats named Asterix and Rumball. Alec is currently a freelance editor and proofreader whose clients have included various UB-affiliated individuals and entities. He is also enrolled in UB’s new Certificate in Innovative Writing program, where he is studying short story and novel writing.
This article moved me greatly, thank you for publishing it. I also shared the essay with my wife, who has a degree in psychology and previously worked in autism research at Western Psych in Pittsburgh; she similarly commends AtBuffalo and Alec for an extraordinary piece of writing. We as a society are becoming more understanding about Asperger's, but we still have a long way to go. The direct (and exquisitely communicated) experiences of an "Aspie" are inspirational, educational, and heart-wrenching. My family congratulates Alec on everything he has accomplished so far, and wish him all the best in what is clearly going to be a tremendous future.