Asperger’s syndrome is a formerly used diagnostic category that ceased to be a distinct diagnosis when the DSM-5 (2013) and ICD-11 (2022) merged it into autism spectrum disorder. ASD level 1 (requiring little or no support) is a cumbersome replacement name. This change reflected a shift toward a unified understanding of autism-related conditions. The change was controversial. Self-identification using the Asperger label became much rarer (going from 51 percent in 2018 to 19 percent in 2022) following the publication of the 2018 Edith Sheffer book “Asperger’s Children”, which implied Hans Asperger was complicit with the Nazis. This is also controversial and ignores the tremendous additions Asperger and Lorna Wing (who first used the term Asperger’s) made to understanding autism.
Despite its removal from contemporary medical classification systems, I have continued to identify with the term “Asperger’s” because of its long-standing use, personal relevance, and the way it has shaped my diagnostic history and community identity.
Using the “high-functioning” label may hurt someone’s feelings or even offend them. Instead, many autistic people use the terms “low support needs” and “high support needs” to describe where they fall on the spectrum. I use the term “high-functioning Asperger’s” for those at the far end of the spectrum, the most successful of Autism Spectrum Disorder Level 1. They have low support needs and need little assistance with day-to-day tasks. But more importantly, they maximize their potential to become success stories.
That success is best understood using the Terman Longitudinal Study. Lewis Terman was a professor of psychology at Stanford who created the Stanford-Binet, the standard IQ test taken by millions worldwide. In 1921, in one of history’s most famous psychological studies, Terman began looking for geniuses. He used intelligence tests in California’s elementary schools to test 250,000 students. 1,470 had very high IQs and became the “Termites”. For the rest of his life, Terman tracked, measured, tested and analyzed the educational level, marriages, illnesses, and psychological health of 730 individuals.
The top 20% were the true success stories – lawyers, doctors, engineers and academics. 90% graduated from college, and there were 98 graduate degrees. The middle 60% were doing satisfactorily. The bottom 150 had done the least with their superior mental ability. They were the postal workers, bookkeepers, or men lying on their couches at home without any jobs. 1/3 were college dropouts; 25% only had a high school diploma. And all 150 in this group had been dubbed a genius at some point. Only 8 had graduate degrees. The majority had careers considered ordinary, and a surprising number were failures. Two students who became Nobel Laureates were missed – their IQs were not high enough. The meaning of genius was changed forever. Intellect and achievement are far from perfectly correlated.
In the end, family background was the main factor. The As overwhelmingly came from the middle and upper classes. Their homes were filled with books. Half the fathers had a college degree. The Cs were from the other side of the tracks: a third had a parent who had dropped out of school before the 8th grade. Perhaps many of the middle and bottom achievers were autistic, resulting in their social challenges.
Today, many of Terman’s ideas remain central to our thinking about success. Schools have programmes for the “gifted.” Elite universities require intelligence tests, and high-tech companies measure cognitive abilities. They are all convinced that those at the highest IQ scale have the most significant potential. Geniuses are the ultimate outliers. This has produced an era of meritocracy, populated by people without the necessary social skills to be the best at their jobs.
The relationship between success and IQ works only up to a point. Once 120 is reached, additional IQ points don’t translate into any measurable real-world advantage. IQ thresholds are less critical for success than are personality and character. A mature scientist with an adult IQ of 130 is as likely to win a Nobel prize as one whose IQ is 180.
The Asperger’s brain is uniquely suited to developing genius. One could even go so far as to accept the corollary—genius is only possible in an Asperger’s brain. Isaac Newton, Albert Einstein, Charles Darwin, Steve Jobs, Bill Gates, and Elon Musk were/are geniuses, and all have Asperger’s syndrome. Asperger’s ancestors have left behind an enlightened and improved society and world.
A distinctive cluster of aptitudes, skills, attitudes, and abilities is part of autistic intelligence. The absence of a functioning anterior cingulate gyrus locks the autistic brain in focus, eliminating the clutter of social behaviour. This may be the one overriding characteristic of all people with autism, whatever their level of function. Not only does it facilitate concentration, logic, common sense, and special interests, but it also causes the notorious social dysfunction autistics are so well known for.
They can see things and events around them from a new point of view. This ability can lead to exceptional achievements which others may never attain. They have specialist knowledge in a particular area, good visual and spatial memory, are methodical and organized, can understand abstract concepts, and have problem-solving/logical reasoning. Some people with Asperger’s are visual thinkers; others are math/pattern, verbal/linguistic, or music thinkers, but all think in specifics. The Asperger’s mind wants to figure out how things work and enjoys and focuses on details, while the normal mind is more skilled at assembling whole concepts from more information.
People with autism and other cognitive differences make contributions to society that so-called normal people are incapable of making. Rather than being considered a normal child trapped within an “autistic shell,” waiting to be rescued, Asperger’s is “a way of being” that colours every experience, sensation, perception, thought, emotion, and encounter, every aspect of existence.
ASD is a developmental brain condition that affects how you communicate and learn. The causes are entirely hereditary. Autism spectrum disorder is diagnosed in males more often than females. The explosion of autistic diagnoses is mostly accounted for by females who are typically diagnosed at a later age. Females mask their social dysfunction much more effectively than males. People with Asperger’s at this end of the spectrum may not be diagnosed until late in life. Assessment tests for autism usually miss this end of the spectrum.
There is no single treatment, and “treatment” of any form of autism should not be a goal, since autism is not a disease that can be removed or cured. Management of high-functioning Asperger’s provides education, training, and social support/care required to improve the person’s ability to function in the everyday world. Interventions may include social skills training, cognitive behavioural therapy, physical therapy, speech therapy, parent training, and medications for associated problems, such as mood or anxiety. Autistic characteristics tend to become less obvious in adulthood, but social and communication difficulties usually persist.
THE ADVENTURE OF DISCOVERING MY BRAIN
Most people don’t like me. However, I like people like me, knowledgeable people who use common sense and logic. Despite being highly successful at virtually anything I put my mind to, I have been a social disaster. As I write this at age 69, this may be hard to believe, but until recently, I never understood why. I didn’t realize that my countenance was stern-looking, that I didn’t have a ready smile. It didn’t occur to me that I was saying things in a generally unacceptable way in most societies. Being a relatively intelligent medical doctor, one might think I would have had more insight. Maybe my Asperger’s was involved in this “mental block”?
I can be guilty of some of the following. Many people with Asperger’s syndrome consider a conversation to be primarily an opportunity to exchange information, to learn or to inform, and if there is no information to exchange, why waste time talking? I may be notorious for being verbose when interested in a topic. Still, when the subject matter is of little personal interest or has been introduced by someone else, I may be reluctant to participate in a conversation at all.
Sometimes, I can be criticized for being tactless or socially naive during a conversation, perhaps saying something true that would hurt someone’s feelings or is inappropriate for the context. From early childhood, typical children adjust the topic of discussion according to whom they are talking to. Such modifications are based on understanding social hierarchies and conventions and the need to inhibit specific comments when considering the other person’s thoughts and feelings. In AS people, due to impaired or delayed Theory of Mind abilities, the conversation can be a social ‘minefield’ with the tendency for the conversational partner to be offended by the comments, criticisms, and value judgments of the person with AS.
However, being offensive is not usually the intention of the person with AS, who tends to speak their mind and, unfortunately, has greater allegiance to facts and the truth than to someone’s feelings.
Sometimes, the problem is not what I said but how I said it. This can give the impression that I am overly critical, grudging with compliments, abrasive, argumentative, and impolite. Other people will know when to think rather than say something and how to avoid or subtly modify comments that could be perceived as offensive. It is essential to recognize that there is no malicious intent.
Being factual and honest seemed the only natural way to be. I accept virtually nothing on faith. I desire evidence-based facts. And when there is no clear evidence, I use my knowledge base to formulate a common-sense, logical answer to problems. But most people don’t want to hear the cold, intricate details. They want empathy, sympathy, consideration of their feelings, and kindness.
When I have a social decision to make, I intellectualize it using my left brain and bypass the emotional side. It takes me about 24 hours to access that side of my brain and finally make the right “social” decision.
Both these make Aspies not very good in social situations. Our brains are wired differently—we see things from a different point of view.
I get easily annoyed with “neurotypical” thinking and behaviour. If things are being done in ways that don’t use intelligence, make common sense, or are not logical, I can get irritated and display my displeasure.
I have never understood why everyone doesn’t think like me. I have lots of great, logical ideas. There is always a better way to do things. But most people are content with how things are and aren’t looking for a better way – they find it easier to go with the flow and don’t sweat the small stuff. My difficulties with expressive language prevent me from effectively expressing ideas.
THE JOURNEY
I didn’t understand why, but when I was about 60, I read the book Neurotribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman.
Everything written on autism includes Asperger’s syndrome as part of the autistic spectrum. I could relate to some of the high-functioning Aspies.
If I were to be evaluated by a clinical expert on autism, I doubt that I would be diagnosed with Asperger’s. This is similar to many of the famous people with high-functioning Asperger’s – most seem pretty normal but describe preferring to be alone and often have social issues. My revelation came after reading one sentence: “Do you get easily annoyed with people?”. That turned on the light bulb. That’s me. I don’t suffer fools gladly. I get annoyed easily and often express it with facial expressions or, worse, verbally.
I am not very tolerant and even less tolerant of myself. I get much more annoyed with myself than with others. I don’t tolerate my mistakes well.
I put Neurotribes down and didn’t finish reading it until about 4 years later. It now forms the backbone of the post on the History of Asperger’s. Starting with the biographies of Henry Cavendish and Paul Dirac (I added Sir Isaac Newton), Steven Silberman chronicles how autism was first described in the early 1940s by Leo Kanner and Hans Asperger and proceeds through the evolution of the spectrum to the present day.
Kanner’s thinking was that autism was rare and most required institutionalization. Mothers of children with autism were described as “refrigerator” mothers, creating decades of enormous guilt.
The search for the cause and cure, rather than providing the services autistic people require, has set back the lives of autistic people for decades. The “vaccination wars” delayed understanding again for years. Asperger’s syndrome was not well appreciated until the 1990s, as people who could be highly functioning.
In 2020, with lots of time on my hands during the COVID pandemic, I Googled books on Asperger’s and bought four of them. I would get some answers.
I read The Journal of Best Practices: A Memoir of Marriage, Asperger Syndrome, and One Man’s Quest to Be a Better Husband by David Finch (2012), about a man with Asperger’s and his social dysfunction and how it affected his marriage. However, many of his qualities were specific to him, and I had difficulty relating. I still didn’t understand how our brains are “wired” to behave in particular ways. I still didn’t know what I said to people that turned them off.
I arrived at one story when he and his wife shared an apartment with another couple. I knew what was coming. Feeling uncomfortable, I put the book down for a few months before finally finishing it. But I still could not relate to him. We are all different. Asperger’s has its spectrum, determined by nature (DNA and genes) and by nurture (how our parents and interactions with others raise us).
The next book I started to read was Asperger’s in Love: Couple Relationships and Family Affairs by Maxine Aston, Christopher Slater-Walker, et al. (2003). Written by a marriage counsellor who worked primarily with couples with one or both having Asperger’s, I increased my knowledge base. A major revelation was the discussion of brain wiring that bypasses the part of the brain that deals with empathy, communication skills, and social functioning. But after reading only about half, I have yet to finish it.
I also bought Asperger’s on the Inside by Michelle Vines (2016), a woman with Asperger’s. I didn’t have time to start reading it, but one day, I opened it up to one page. She related the story about a woman who had had a spontaneous miscarriage and the responses from friends on Facebook. Everybody made empathetic responses, but she gave the Aspie way of looking at spontaneous abortions – that mistakes are made in the formation of the embryo and that most SAs reflect those mistakes and can be viewed positively – as a way to deal with something that was “not meant to be”. She was criticized for her response. I now finally understood what I was doing, giving the truth, and it was often not appreciated.
I then read The Complete Guide to Asperger’s Syndrome by Tony Attwood. This is easily the most comprehensive discussion of high-functioning Asperger’s syndrome. He draws on his extensive clinical experience to explain many of the nuances of the syndrome.
Even though I have lots to learn, I now understand some of my issues in social behaviour. Each book added information that I found to be the most freeing moments of my life. Now, whenever I say things in an aspie way, I recognize it. With my friends, I would now open up a statement I recognized as an aspie way of expressing myself with “I’m going to aspie you”. I thought that by doing that, the statement would be OK, and I could get away with saying socially inappropriate things. Maybe they would even appreciate my particular way of expressing myself. I am unsure if it works very well.
This started “Ron’s adventure of discovering his brain”. It has been one of the most exciting times of my life.
Not long after, I decided to write this book. I couldn’t relate to the common belief that people with Asperger’s don’t feel empathy, can’t read other people’s feelings, constantly change the conversation back to themselves, have no sense of humour, or can’t fall in love.
I had to read all the literature to understand how high-functioning Asperger’s people thought and expressed themselves. Virtually all the literature dealt with poorly functioning autistics or low-functioning Aspies, to whom I could not relate. Hopefully, this book will answer those who are highly functional but have many social problems. Even though it was my personal story, particular to me, I hoped that others with Asperger’s could relate and also “find themselves.” It is a very freeing feeling.
Asperger’s gives me many talents. I am intensely curious about the world, have an enormous drive to excel at everything I have developed a passion for, and am always looking for a better way to do something. I am intensely passionate about anything that interests me.
I express myself much better by writing them down. My mind will ruminate over ideas until I can put them on paper to “free up my thinking.” As you can see from my writing style, I express things in terse, factual ways. I have a great passion for reorganizing what other people write in a logically organized way. I often take multiple sources and combine them to formulate one coherent text. I leave out the non-factual material that may not have much bearing on the final message.
Language is one aspect of autism I have struggled to understand. It significantly affects how others view me. Although individuals with Asperger syndrome acquire language skills without significant general delay and their speech typically lacks significant abnormalities, language acquisition and use is often atypical. Abnormalities include verbosity, abrupt transitions, literal interpretations and miscomprehension of nuance, use of metaphor meaningful only to the speaker, auditory perception deficits; unusually pedantic, formal, or idiosyncratic speech; and oddities in loudness, pitch, intonation, prosody, and rhythm. Echolalia has also been observed in individuals with AS.
Three aspects of communication patterns are of clinical interest: poor prosody, tangential and circumstantial speech, and marked verbosity. Although inflection and intonation may be less rigid or monotonic than in classic autism, people with AS often have a limited range of intonation: speech may be unusually fast, jerky, or loud. Speech may convey a sense of incoherence; the conversational style often includes monologues about topics that bore the listener, fails to provide context for comments, or fails to suppress internal thoughts. Individuals with AS may fail to detect whether the listener is interested or engaged in the conversation. The speaker’s conclusion or point may never be made, and attempts by the listener to elaborate on the speech’s content or logic, or to shift to related topics, are often unsuccessful.
Rather than viewing Asperger’s as a pathological abnormality, I now think of myself as neuro-atypical, a person who is part of human “neurologic diversity”, as are people with ADHD or dyslexia. Viewed as possibly dysfunctional and a social misfit by the rest of society, I love what Asperger’s has allowed me to achieve. We skip the emotional stuff and get to the facts. We don’t just talk the talk; we walk the talk. I believe almost anything is possible when I direct my tremendous energy and drive to achieve something.
