Detached and Separate: For Me, Lifelong Feelings

“When did you first realize you were different?”

I sometimes get asked this question. My answer invariably is, “I have always known.” Even the first time I was asked, I did not hesitate, so sure was I in this knowledge.

Being apart from others is a fate that is thrust upon autistics by our neurology, not something we choose. Sometimes we have no interest in playing those silly neurotypical games, but more often we just don’t understand them. I self-diagnosed Asperger’s syndrome at age 59, and in the years since then I have learned how to mitigate my disability. I have learned the value of small talk, and the joy of connecting with people I might formerly have found too strange for words. I have become more tolerant and calmer. My life is more fulfilling and hopeful. Yet, I also continue to struggle, and I know I will never lose that sense of being detached and separate.

This is the third in a series of posts inspired by the 2011 book Steve Jobs by Walter Isaacson. In the first post, Autism is a Silver Car, I expressed my view that autism is a way of being in the world. In the second post, I began the exploration of Jobs’s childhood, reevaluating some of the opinions expressed in the book through my own lens of experience. Here, I continue my commentary on Chapter 1.

Chapter One: Childhood

Silicon Valley In this section, the author describes the environment in which Jobs grew up, and his relationships with other people in his formative years, especially his father. On page 6 an account is given of a fence his father built: Jobs “recalled a lesson that his father implanted deeply in him.” He told of his father building cabinets and fences so that even their backs were crafted properly. “He even cared about the look of the parts you couldn’t see.” This sort of perfectionism would appeal to an autistic mind, and years later Steve would apply that design principle to his products. I was reminded of my experience in Venice, where the tour guide in Saint Mark’s Basilica in Venice explained that there were works of art that are no longer visible because, even though the artists knew that their mosaics, statues, and other works would be sealed off from view, they felt that God would see them, so that it was important to have them be just as beautiful as the ones in public sight. At the time, I was very impressed by the religious conviction of these long-ago artists; now I realize they were simply autistic.

In the 1950s, in Silicon Valley, “even the ne’er-do-wells tended to be engineers.” [page 8] Note that this was decades before the concentration of autism in the area was noted in that famous 2001 article by Steve Silberman in WiredThe Geek SyndromeObviously, you don’t have to be autistic to be an engineer, but it is one of the professions that is appealing to autistic people, so probably attracts more than its fair share.

During these early years, Jobs says he “realized I was smarter than my parents. I felt tremendous shame for having thought that.” This was a particularly poignant statement for me, since I had experienced the same feeling, with respect to my father. It was not so much that I felt I was “smarter” since my father had many talents that I did not share, such as his musical and literary abilities. My distress came from the realization, as I made plans to attend college (something my father never had the opportunity to do), that I was about to “show up” my father.

In any case, from Steve’s friends came the report that this discovery by Jobs “made him feel apart  – detached and separate  – from both his family and the world.” I’m skeptical. Perhaps that’s what his friends thought; maybe that’s even what Steve thought and reported, but the truth is that being autistic creates that same feeling.

Next: Childhood (continued): School

Dilettantes Need Not Apply: Autistic Behaviors are Complex, but not Psychotic

 

One thing that struck me when I first began to grok what it means to be autistic was how very wrong were many of the “Freudian” explanations and bits of advice I had gotten over the years. I put the word in quotes to indicate I am using it in the vernacular sense of unconscious actions that spring from some repressed trauma. We all know that a Freudian slip is when you say one thing but mean your mother. 🙂

This kind of (false) thinking seems quite pervasive in our culture, to the point that everyone becomes an amateur psychoanalyst, looking for hidden meanings, instead of seeking a simpler explanation.

This is the second of a series of posts, commenting on the meaning of being autistic. My thoughts here have been inspired by reading Steve Jobs, the 2011 biography by Walter Isaacson. In the first of these posts (Autism is a Silver Car), I began to explore the idea that autism is a way of being in the world. I will continue to develop that theme here.

Chapter One: Childhood

The Adoption: Isaacson writes (on page 4)

“Abandoned. Chosen. Special. These concepts became part of who Jobs was and how he regarded himself.”

The author has an overblown idea of the impact on Jobs’s personality of knowing from a young age that he was adopted. Isaacson has done a bit of second-hand psychoanalysis, based on interviewing some of Steve’s friends. “His closest friends think that the knowledge … left some scars.” He quotes Del Yocam, “I think his desire for complete control of whatever he makes derives directly from his personality and the fact that he was abandoned at birth. He wants to control his environment, and he sees the product as an extension of himself.” And Greg Calhoun, “Steve talked to me a lot about being abandoned and the pain that caused. It made him independent. He followed the beat of a different drummer, and that came from being in a different world than he was born into.” And Andy Hertzfeld, “The key question about Steve is why he can’t control himself at times from being so reflexively cruel and harmful to some people. That goes back to being abandoned at birth. The real underlying problem was the theme of abandonment in Steve’s life.”

These, it seems to me, were people grasping at straws, seeking to understand a person whose personality was complex and perplexing. I reject these psychoanalytic speculations, and, as mentioned in Autism is a Silver Car, by invoking Occam’s razor, I see that all of these “quirks” are fully understandable if one simply posits that Steve Jobs was autistic. The deep desire for and attempt to achieve complete control, for example, is a common mode of behavior for autistics. Our need for controlling our environment springs not from any feeling of “abandonment” or even of being different; rather it is an attempt to reduce the anxiety and stress that arises from our fear of change or of the unknown. New or unpredictable situations or outcomes can be terrifying to us (likely attributable to all the extra brainpower that is required to process them). Add in our streak of perfectionism, and you get a strong desire to be able to completely control (and therefore predict) the outcome of a process that is important to us. Granted, these behaviors can, in reality, be self-defeating, as when we alienate the very people we need to enlist to control change.

Similarly, being “independent” and following the “beat of a different drummer”* as well as “being in a different world” are all rather cliché ways of describing autistic people.

As to explaining why Steve Jobs was “reflexively cruel” my guess is that his need for control and perfection was so paramount to him that he did not realize the extent of his insensitivity, and perhaps did not understand why (or that) other people did not share his vision and passion. Doing perspective-taking is hard for autistics, and doing self-perspective-taking (seeing ourselves as other see us) is the hardest of all.

* In the Conclusion to Walden, Thoreau writes,

“If a man loses pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured, or far away.”

Henry David Thoreau was himself likely autistic.

It is telling that, according to Isaacson, “Jobs dismissed this.” He called all of the attribution of his behavior to “abandonment” to be “nonsense” and “ridiculous.” So, shall we believe the amateur psychologists, or shall we believe the person who experienced his life?

Next: Childhood in Silicon Valley

Autism is a Silver Car: The Story of Steve Jobs

Maybe, for me, learning that I am autistic was like buying a new car. A few years ago, I acquired a silver car. Suddenly, silver cars were everywhere! I never realized there were so many on the road until I tried to find mine in a parking lot.

I have come to think of autism as not just a diagnosis, but as a way of being in the world. Now that I understand the essence of being autistic, I see autistic people everywhere. People who are, or have been, in my life. Public figures. Historical figures.

When Steve Jobs died, there was, as you know, a great deal of press, most of it quite favorable. As I followed the tributes and the recounting of his life and accomplishments, I began to identify strongly with many of his attributes and experiences. Not that I had lived a life like his in terms of interests and accomplishments, but what struck me was the way he lived his life. I felt his challenges deep within my soul, and I saw that the way he dealt with them was the same way I might have, had I been in his shoes.

This post is a follow-up on my earlier one about Steve Jobs. In that post, I asked the question, “Was Steve Jobs Autistic?” — in this one, I provide the beginning of my assessment that the answer is: “Yes!”

I am reading the new (2011) eponymous biography of Steve Jobs by Walter Isaacson, published by Simon & Schuster. I have just started this 576-page book, and so far, I have found it to be engaging and well-written. As I read more, I will write additional posts, and when I am finished with the book, I will circle back and write a summary. So, for now, this series is a reader’s journal, with observations about passages that I encounter and thoughts that I have along the way. As always, your comments are welcome and invited.

This is the first of a series, some of which I have already written, and many more (I suspect) that will be inspired by later sections of the book that I have not yet read. If you have the time and patience to follow along, I think you will enjoy my exploration.

Introduction

This is a book about the roller-coaster life and searingly intense personality of a creative entrepreneur whose passion for perfection and ferocious drive revolutionized six industries…

So writes Isaacson toward the end of his introduction. I know that leading a “roller-coaster life” is not a diagnostic criterion for autism. I am also fully aware that one need not be autistic to have had such a life. And, although this phrase certainly describes my own life experience, I do not presume to speak for all autistic people when I attribute that phenomenon to my autism. Despite all of these caveats, my belief is that when nearly every defining aspect of a person’s behavior and personality seems to match my own understanding and intuition about the essence of what it means to be autistic, Occam’s razor can most assuredly be invoked to say that the simplest explanation for all of these varied qualities is that the person is autistic. Such a person, I believe, is identified in the life story of Steve Jobs.

Caveat City: I comment on this from my perspective as an autistic adult, as I will do on many passages that appear later in the book. I have no formal training in neurology, psychology, or any of the other ologies that bear on becoming a good diagnostician. (My background is in investments and economics.) What I do have is a lifetime of experience as an autistic person. In the past several years, I have read widely, attended countless conferences, and talked extensively with many people who are trained in this field, and have also come to know and befriend many people who are, like me, autistic.

Again, I am aware that having a “searingly intense personality” will not appear on any of the checklists that clinicians use to diagnose autism. Nor will the phrases appear that include the likes of “creative” or “passion for perfection” or “ferocious drive” – yet these words have (accurately, I believe) been used to describe me. Now, granted, I did not create the world’s most valuable company, but I have had successes of many kinds. As have many of my autistic friends. My good friend John Robison, for example, wrote a book that haunted me as I read it, because his life story is eerily similar to mine. His career focused on electronics and things mechanical, whereas I worked in the realm of financial theory and investment strategies and products, but our experiences were strikingly similar.

A few more quotations from the book’s introduction, then on to Chapter One. I offer these without further comment, other than to say that all of the qualities mentioned here are, to me, part and parcel of the autistic personality. Not that every autistic person has all of these traits (and, of course, many a non-autistic person has some or even all of these). Still, if it walks like a duck… I will have more to say about these individual qualities in future posts, I’m sure.

This is also, I hope, a book about innovation.

Jobs stands as the ultimate icon of inventiveness, imagination, and sustained innovation. … He and his colleagues at Apple were able to think differently…

Driven by demons, he could drive those around him to fury and despair.

Shakespeare’s Henry V … begins with the exhortation “O for a Muse of fire, that would ascend / The brightest heaven of invention.”

Next: Chapter One: Childood

Article on Perspective Taking in the Workplace

Michelle Garcia Winner and Pamela Crooke have written an excellent book called Social Thinking At Work.

In this article on the North River Press website, they explain in summary form the essential elements of perspective taking. Although they never use the word “autism” it is well-known that autistic people have difficulty learning perspective-taking. For me, the hardest aspect of this is self-perspective-taking (seeing myself as others see me).

As the authors acknowledge, “… a concept in theory is not the same as a concept in practice.” Their book has many pragmatic suggestions that will help people who need practice.

Autism is often labeled a “developmental delay” and it is especially in the area of social communication that the delay can be noticed. But delayed development is not arrested development, and these skills can be learned.

The autistic brain develops more slowly and retains more plasticity than the neurotypical brain. The results of this markedly different development are varied, and include a tendency to experience sensory overload. In fact, it seems to me that the autistic brain is usually quite busy doing all the extra processing of inputs that is its hallmark, resulting in such things as slow processing time, impaired motor neuron functioning (because of everything else going on, not because the mirror neurons are malfunctioning or absent), and a fixation on routines already learned.

Those of us who are autistic find comfort in routine because it helps reduce the amount of brainpower we need to devote to figuring out something new, and helps reduce stress levels. Routines are soothing. The downside, of course, is that getting stuck in a routine can prevent one from learning essential new skills. The prefrontal cortex of the brain, which is responsible for such things as emotional regulation and executive function, is the last part of the brain to develop fully. In neurotypicals, this process is thought to be done at around age 30. For autistics, it undoubtedly takes longer. As a result, by the time we are expected to be fully-functioning social creatures, we may be stuck in behaviors that are less than optimal, and it takes conscious effort to relearn or learn what we need to know to be more successful socially. The good news is that the plasticity of our brains allows us to learn rapidly and also late in life; to acquire new skills takes a recognition that we need to change and the will to do so.

All of this analysis has been done by an amateur neurologist, by the way. I have no formal training in this area; I’m just fascinated by it and have done lots of reading and thinking. The speculations contained in this post are entirely my own, and if they are incorrect, I have no one to blame for leading me astray; I went there voluntarily.

Vaccine Scandal is in the News Again

According to a report on MedPage Today, the High Court of Justice in London has cleared the name of one of the authors of the fraudulent vaccine-autism-link paper published in 1998 by Lancet (and formally retracted by that journal only recently).

One of the other authors, Andrew Wakefield, remains under a cloud. It is amazing how much damage one person has done.

Update March 13: There is an article on an Austin website about the libel suit filed by Wakefield against the reporters who outed him. This might be funny (if pathetic) if it were not for the real harm that has been done in the world.

And, much, much more here in an article on the website of The Thinking Person’s Guide to Autism.

The Aspergerian (aka Clueless) Dating Game

Atypical white matter possible precursor to autism

Wow! This is “science”? Notice any bias in a statement like this?

According to researchers, children with ASD had higher fractional anisotropy “followed by slower change over time relative to infants without ASDs.” Radial and axial diffusivity also seemed to be associated with ASD. These results appear to indicate that infants with aberrant white matter development go on to develop ASD.

I have no problem with the title of the article linked above. But in the body of the article, the words “atypical” and “autism” disappear and are replaced with “aberrant” and “ASD.” Use your own favorite dictionary, but one I found defines “aberrant” as “straying from the right or normal way.” That’s very judgmental, as opposed to “atypical” which is much less value-laden. And, of course, the “D”  in “ASD” stands for “disorder” — which is also a very judgmental word. Autism, in my view, is not a “dis”order but a “different” order. Neither better nor worse, but certainly different. It is, however, clearly a disability in a world that demands conformity with the way the other 97% of the population thinks and acts.

When you strip away all of the loaded language, what this study confirmed is that the autistic brain has more white matter and develops more slowly than the (neuro)typical brain. This is hardly news, but has been known for years. But I guess if you accept a research grant, you have to publish something if you’re to have any hope of getting more grants, and the more incendiary you can make the language, the more you are making the case that more research needs to be done to get at the “cause” of this serious disorder.

What malarkey! How about some research into the implications this has for the way that autistic people think and learn? Perhaps that way we could develop training programs to help neurotypicals think like autistics.

Crime and Punishment in America

This letter in the February 27 New Yorker caught my eye. The author’s affiliations are not stated, though given The New Yorker’s reputation for vigorous fact-checking, I’m sure her credentials were vetted.

She says that in her “work with incarcerated women” she encounters a large segment of inmates who are serving time simply to pay off minor fines. So, if true, it seems that in 21st-Century America, we still have debtor’s prison, and money does buy better justice. How shameful!

A couple of fascinating timelines

I’ve enjoyed poking around two websites that have timelines of events relating to disabilities.

One is from the Lives Worth Living website (the name of a PBS documentary which has received high praise in the disability community).

Some of their material is taken (with attribution) from another, more detailed timeline found on the National Consortium on Leadership and Disability for Youth (NCLD/Y) website.

Both of these are extremely interesting to me, since I’m relatively new to the world of disabilities and have not been aware of much of the history that is told here. It’s encouraging to see how much progress has been made, but it’s also clear we have a long way to go!

This caught my eye, on the (NCLD/Y) website:

“1800: First Medical Classification of Mental Disorders

Phillipe Pinel writes Treatise on Insanity in which he develops a four-part medical classification for the major mental illnesses: melancholy, dementia, mania without delirium, and mania with delirium.”

In light of the recent controversy over the DSM (the Diagnostic and Statistical Manual of Mental Disorders), it interests me to learn of the development of the concept of “mental illness” (a term no longer in use). [See also this excellent statement.]

Not satisfied with the simple description of Pinel’s work, I of course did a web search that led me to, among other things, a rather lengthy academic paper, reproduced on the NIH website. I guess I could make a full-time job of studying this history, but I’m afraid I’ll have to do it a little at a time. Perhaps I can circle back at a later date and report on what I’ve learned.

UPDATE: in doing further research, I discovered another timeline, and some of the dates here are not quite the same as in the others.

Bill Moyers Essay: Are Immunization Exemptions Fair to All?

This is an excellent commentary by Bill Moyers.

With clips from a movie, excellent graphics, and his usual dispassionate appeals to reason, he makes his case a convincing one. It’s only 5 minutes long, and well worth a watch!

If you’re interested in learning more, you could do no better than to read Seth Mnookin‘s book on the subject, and to follow his blog posts.