Jun 28

Recent Autism Research: A Synopsis

Current Research

Implications for the Asperger Community

A Conference Co-Sponsored by Asperger’s Association of New England (AANE), Northeastern University, and YouthCare

 Held at Northeastern University on March 16, 2012

One Person’s Observations and Reactions

©2012 Michael Forbes Wilcox

 This post is a lightly-edited version of an article that appeared in Issue 10 of the AANE Journal: Spring 2012

NB: the writer has no formal training in neurology, psychology, or any other -ologies that relate to autism. These musings come from someone (with a background in economics, finance, and investments) who self-diagnosed Asperger Syndrome in 2006, at 60 years of age.

Surprising Concordance

I was struck by a couple of common themes that ran through all six of the research presentations given during the day.

  • Science has learned many things about autism in recent years, and these findings often run contrary to the received wisdom. Yet, several important research findings, such as the ones presented at this conference, have not made their way into common knowledge.

  • New scientific understanding of autism is growing by leaps and bounds, which gives us great optimism that we will rapidly gain new appreciation of just what it is that is different about this wonderfully complex neurological state. Still, the more we learn, the more we realize how much we do not understand.

Major Findings

Here are a few points that I distilled out of the day’s proceedings. There are many common misconceptions about autism; one might even call them autism myths. The latest scientific research either finds no evidence to support these beliefs or, in some cases, has proven them to be quite contrary to the evidence. Here are some of the main lessons I took away from the conference:

  • Autism is not a “spectrum” condition. There is a clear dichotomy between being autistic and non-autistic (neurotypical). In fact, autism itself is a word that describes a variety of heterogeneous neurological differences. It might be more accurate to say there are many different kinds of autism. Perhaps a better metaphor might be the “autism constellation.”

  • There is no correspondence between autism and intelligence. The terms “high-functioning” and “low-functioning” have been used to describe autistic people, based entirely or mostly on IQ level. These terms are not at all helpful, since they do not describe pragmatic functional ability.

  • Similarly, commonly used “severity” labels are neither accurate nor useful. There is neither a “mild” nor a “severe” form of autism. These terms may simply describe the difficulty of diagnosing or recognizing any given person as autistic.

  • Autistic people have a very different way of thinking about the world. That different way is just that; a difference, not a deficiency. Autistic brains simply may have a different “default” mode from neurotypical brains. We may prefer to focus on details, for example, but that does not mean we cannot see the big picture.

Brief Synopses of Presentations

There were six presenters; here is a brief look at their topics and a couple of observations about each one. This is not intended to cover the full gamut of each hour-long presentation.

  1. Pharmacotherapy: There are medications that can be effective in addressing some of
    the negative qualities associated with autism, including anxiety, irritability, and hyperactivity. There are no drugs, however, that can treat the core symptoms of autism, which have to do with social interaction and communication.

  2. Multimodal Neuroimaging: Insights gained from combining different brain-imaging techniques tell neurologists that, from a neurological point of view, autism overlaps with bipolar and schizophrenia. It is also evident that what we call autism is quite heterogeneous. That is to say, there are different types of autism, and it is not a quality that one can have more or less of (autism does not exist along a continuum, or a spectrum). Cognitive control is a key subject under investigation, and one thing has become clear: behaviors that appear the same to a casual observer may look very different neurologically. This is worrisome since autism is diagnosed primarily by observing behavior.

  3. Social Engagement at School: On-site observations have called into question the value of the one-on-one aide model, at least as it is currently implemented. Also, there seems to be no empirical support for the notion that autistic children are, on average, more socially isolated than neurotypical kids. One underutilized technique for addressing socialization challenges is to engage children in suggesting solutions, instead of having teaching being guided entirely by adults. The artificial environment in which most social thinking training is done may make it less relevant than it could be.

  4. Different Preferences for Attention: At least a couple of the stereotypes that have grown up around autism seem to have no scientific support. Studies designed to measure central coherence (seeing the big picture) and “sticky attention” (the relative inability to shift focus) have revealed no essential difference between autistic and neurotypical subjects. What is clear is that autistic people have different preferences; and may prefer, for example, to dwell on detail. That doesn’t mean they can’t see the big picture; it’s just not as interesting.

  5. Adaptive Behavior Deficits: It used to be thought that 70% to 80% of autistic people also suffered from intellectual impairment. Recent studies show the number to be the other way around. (As an aside, I’m not aware of any connection between autism and intelligence, so I wonder why the percentage of people who are categorized as intellectually impaired would be any different – 5% – from the general population. One caveat here is that there could be developmental delays associated with autism so that age-adjusted testing could be skewed.) The concept of “high-functioning” as it relates to autism is  generally only related to IQ, and so is not really addressing the ability to function in a pragmatic sense. A study of a large group of autistic people found no correlation between scores on a scale of adaptive skills (the Vineland scale) and a measure of “severity” of autism (the ADOS test). This calls into question the relevance of labels such as “mild” and “severe” since they seem to have no practical significance.

  6. Physiological Features of Anxiety: As with brain imaging, measurement of physiological signs of anxiety (such as higher heart rate and perspiration) found that outward behavior is not necessarily an accurate indication of what is going on inside. This suggests that even careful observation by staff may not give an adequate (or even accurate) warning of when a person is experiencing distress. Better techniques are needed.

Jun 25

Is There An Autistic Personality?

Autism is a different way of being in the world, and that difference arises in the brain. The neuronal networks of an autistic brain are somehow different from those of a typical brain. We know quite a bit about many of these differences, although it is not always clear what is the relationship between differences in brain qualities and the hallmarks of autism (certain behaviors, and the different ways of processing information).

Because there is no definitive “biomarker” (e.g. blood test or DNA test) for autism, diagnosing someone as autistic is currently a subjective process that relies primarily on observed behavior, as well as on performance in tests that are designed to ferret out underlying thinking patterns.

One of the most serious flaws, it seems to me, in most descriptions of autism, as well as in diagnostic regimens (such as the DSM), is that they were developed and written by people who are not autistic. It’s a bit disconcerting to read an explanation of a state of mind that has not been experienced by the author. I imagine it is analogous to reading a travel guide about the beautiful Berkshire Hills of western Massachusetts, where I live, written by someone who has never visited.

This essay is an exploration of the idea that there may be an Autistic Personality Type.

If that is true, it may be that a fairly simple personality test would provide a reliable autism screening tool. Many autistic adults have learned to mask the behavioral markers that would be tell-tale signs of autism in younger people. These adults came of age in an era when autism awareness was low or virtually non-existent, and never received the diagnosis that they might have been given in today’s environment. In my own experience, and in my observation of many other autistic adults, self-awareness is one important key to reducing the anxiety that accompanies being autistic, and to unblocking many of the barriers to self-acceptance and to enjoying life to its fullest.

Neuroscience Confirms What I Have Long Suspected

In prior writings and talks, I have jokingly referred to “The Woody Allen Syndrome” – the character he convincingly plays in his early movies. He is socially awkward to the point of inept; he is convinced that the worst possible outcome is about to occur; he is paranoid, pessimistic, and unfocused. He feels unloved and unappreciated, and when something does go wrong, he retreats into a prolonged period of depression and self-recrimination.

Well, it turns out that there is some scientific support that this description may just fit the typical person who is autistic. Which is not to say that everyone who is autistic can be characterized this way, nor does it mean that everyone who has this “Syndrome” is autistic. But, if there is a high degree of correspondence, this description (or, rather, a more scientific formulation of it) may provide important information about the likelihood of someone being autistic.

Details Another Time – Here Are the Key Concepts

It was once thought that two separate areas of the brain were responsible for our emotional life versus our intellectual one. Control of feelings was believed to be solely centered in the more primitive subcortical limbic system. Thought, on the other hand, logically came from the more highly evolved neocortex. As it happens, things are a lot more complicated than that, with both of these areas of the brain involved in emotional as well as intellectual functioning.

Part of the very good news that arises from this understanding is that we can consciously change the way we react to things. We can adjust our responses and, indeed, our very personality styles. This is a topic for another time, but I wanted to mention it here because it is important to know that, if we are not happy with the emotional traits we now possess, we can work to change them. Read on!

Rate Yourself on the Six Dimensions of Emotional Style

The discussion here follows from the categories presented in The Emotional Life of Your Brain, by Richard Davidson with Sharon Begley, Hudson Street Press, 2012.

Neuroscientists have observed that there are six different and distinct brain patterns that are activated during emotional response. This list is an approximate mapping to those patterns. Over the years, psychologists and neurologists have proposed many classification schemes for personality types and for related concepts. Those schemes were based on careful observation, intuition, and controlled testing. So, they had (and have) a certain validity, but they were not based, as these are, on direct observation of brain functioning. My hunch is that, over time, these approaches will be harmonized, so that the best of both will survive and inform us. In the meantime, have some fun with this new structure.

You can rank yourself on a scale of 1 to 5, or just high or low, or plus or minus, or any way that is useful to you. In any case, you will get the drift.

  1. Resilience: how quickly do you recover from shock or adversity?
  2. Outlook: how long can you sustain a positive emotional state?
  3. Social Intuition: can you pick up on and respond to social signals from those around you?
  4. Self-Awareness: do you act on impulse or out of understanding of your emotional state? Are you hyper-aware of your physical surroundings (sensory overload)?
  5. Sensitivity to Context: can you regulate your actions well enough to behave in ways that are conventionally expected?
  6. Attention: how focused are you on the task at hand?

Now, these are very shorthand descriptions of these emotional styles, but I’m sure you can see that they each cover a unique domain of behavior, and, taken together, they provide a pretty complete description of the components of an overall emotional style.

How Does This Relate to More Traditional Categories of Personality Traits?

One of the more widely used schemes is called “the big five” and often goes by the acronym OCEAN.

  1. Openness (inventive/curious vs. consistent/cautious)
  2. Conscientiousness (efficient/organized vs. easy-going/careless)
  3. Extraversion (outgoing/energetic vs. solitary/reserved)
  4. Agreeableness (friendly/compassionate vs. cold/unkind)
  5. Neuroticism (sensitive/nervous vs. secure/confident)

According to Davidson and Begley, these can be mapped with their new list as follows:

  1. Openness: Socially Intuitive, Self-Aware, and Focused
  2. Conscientiousness: Socially Intuitive, Focused, and Sensitive to Context
  3. Extraversion: Resilient, Positive Outlook
  4. Agreeableness: Sensitive to Context, Resilient, Positive Outlook
  5. Neuroticism: Not Resilient, Negative Outlook, Insensitive to Context, Unfocused

In the last one, substitute High Self-Awareness for “Insensitive to Context” and you have described a personality trait they label as “anxious” – put “neuroticism” and “anxious” together and I think you have the “Woody Allen Syndrome” also known (so say I) as The Autistic Personality. A couple of caveats are in order here: one concerns self-awareness – autistic people are more likely, I believe, to be highly self-aware of their physical surroundings, but less so about their own emotional state. Also, there are areas not explicitly covered in these lists that have to do with motor skills and communication difficulties, both of which can be very reliable clues that a person is autistic.

And, yes, I’m aware that not everyone is the same, and one can be autistic and not share all of these traits. Plus, the “Attention” category is a bit problematic, I think, because (in my experience at least), an autistic person probably lives at both ends of the spectrum – totally focused at one moment to the exclusion of the surrounding world, and then flitting on to the next thing, and the next.

Also, there are attributes that I associate with autism that are not really covered here; such as our obsessive need for perfection. We have high standards, and none higher than for ourselves! There are also outward-oriented characteristics, such as extreme empathy for other people, as well as for non-human animals. And a strong sense of social justice. Then there is the dimension of “Attention” that is longer than “the task at hand” – we have “deep interests” that may occupy us for weeks, months, or even a lifetime.

One striking thing about that last list is that all of the first four traits are made up of nothing but positive emotional styles. The last one is the only one with negative styles, and it has nothing but negatives. Again, this is not to say, by any means, that everyone who is “neurotic” is autistic. But I bet it’s pretty safe to say that anyone who is autistic lives in the world described by this list of negative attributes. Or, at least, that is our natural habitat. I have worked hard to change many of my intuitive responses, and, I think, with some success. Yet, I still feel the pull of those dark forces.

The Autistic Personality is What We Are Born With: We Can Choose to Change!

The good news is that it is possible to change, even though it is, without question, hard work. The high plasticity of the autistic brain makes it very difficult for us to be resilient (the opposite of “plastic” is “elastic” which describes something that snaps back quickly). Yet, that same plasticity enables us to learn quickly and to reshape our brains. It takes self-awareness, willingness, and effort. And, believe me, it is worth it!

I would love to get feedback and thoughts on all of this. Your comments are invited and welcome.

My exploration continues in Part II.

Jun 03

End Abuse and Torture in Massachusetts

On June 2, disability rights advocates rallied in Boston and Canton to protest the continued abusive practices at the Judge Rotenberg Center (JRC).

This is an excellent write-up by my friend Lucy Berrington! I was in attendance at the Democratic State Convention at that time, so could not add my body as a JRC protester, but I was there in spirit. I approached several legislators who were at the Convention to support efforts to close down the JRC. One of them told me he had indeed gone there and received the “Level 1” (mildest) shock in a demo, and he called it “horrible!”

You will be hearing about other efforts that I and others will be undertaking over the coming months to press for action at both the state and federal level to end this barbaric practice once and for all.

Apr 25

You can make a difference! Help stop bullying.

The latest newsletter from MassEquality contains a section about bullying. This is a huge issue for those of us in the disability community. As many of my faithful readers know, I am a member of the Massachusetts Cross-Disability Advocacy Coalition, and this issue will be a major focus for us in the coming months. You will be hearing much more about our activities there.

Meanwhile, please make your voice heard in support of this important piece of legislation:

Next week, on May 3, Massachusetts will mark the second anniversary of the signing of the state’s bullying law. This law requires school districts to create bullying prevention plans and provide training on bullying prevention and intervention for all levels of school personnel. This has made a difference in our schools.

But it hasn’t been enough.

The state law that we currently have doesn’t include language specific to kids who are more vulnerable to bullying, such as kids who are LGBT, kids who are disabled or kids who have other differentiating characteristics. And we know that these young people are often bullying targets. According to a survey by the Gay Lesbian and Straight Education Network (GLSEN), 85% of LGBT students have been verbally harassed because of their sexual orientation, and 18% have been physically assaulted. Massachusetts Advocates for Children revealed in a 2009 survey of 400 parents of children with autism, that 88% of those children had been bullied in schools. This is unacceptable. All of our kids need to feel safer now. MassEquality is trying to fix this by supporting passage of House Bill 3584, which would require schools to list out the categories of those most vulnerable to bullying in their school bullying prevention plans.

Please call your Representative and ask for support of House Bill 3584. We need to continue doing everything we can to protect our youth!                                             

Apr 12

Boredom and Its Antidote: The Importance of Adults

Being autistic is a way of being in the world. Those who are blessed with the special perspective given to us by our autistic neurology are also cursed by the fissure that appears in our interactions with non-autistic (neurotypical) people. It is only natural for all people to assume that others think the same way they do. For neurotypicals, this is the proper assumption 95% or more of the time. For autistics, however, the 95% figure describes the error rate in understanding how another person is thinking and what they mean when they communicate.

Those of us who were children before autism was widely understood or identified had to make our own way in a world that was not made for us and did not understand us. Patterns of behavior that develop in reaction to living in an alien world are recognizable to me. I see them in autistic friends of mine, and in the stories they tell of their past. I do not know for sure that Steve Jobs was autistic, but I find many similarities between the ways he operated as a child and my own life story.

This is the latest in my series of posts inspired by the 2011 book Steve Jobs, by Walter Isaacson.

The earlier ones were:

  1. Autism is a Silver Car
  2. Dilettantes Need Not Apply
  3. Detached and Separate
Chapter One: Childhood

School:  Here we learn about the kind of student Steve Jobs was, and how he started on the trajectory that would define his later skills and interests. On page 12 of the book, Isaacson quotes Jobs on his early school days, “I was kind of bored for the first few years, so I occupied myself by getting into trouble.”

I can relate very strongly with many of the things described in this chapter, and am also reminded of stories I have heard in conversation with autistic friends. Some of the pranks attributed to Jobs are reminiscent of the ones John Robison describes in Look Me in the Eye.

Isaacson adds, “It also soon became clear that Jobs, by both nature and nurture, was not disposed to accept authority.” Oh, my goodness, how many autistic kids (and adults!) does this describe? Perhaps all of us?

I think there are (at least) two or three reasons for this. One is the outcome of the boredom Steve mentions. It seems that our minds are happiest when being challenged. I’m reminded of a friend, Lew Cuyler, with whom I used to ski. He was a much better skier than I (and I’m better than most, being able to do expert runs with ease), and given that our local area was not the most challenging one we’d ever seen, he used telemarking equipment. “It’s how to make a mountain out of a molehill,” he explained to me.

I think autistics who are bright (which is pretty much the effective definition of Asperger Syndrome) enjoy having their brains fully engaged at all times, even if it means taking a simple task and making it complicated just for fun. Schoolwork is often trivially easy, and if we fail to find a way to make it complicated, our brains look for other things to do. Idle brains are the devil’s workshop, you might say. Thus, doing creative things is fun, and if those things happen to be outside the bounds of permitted behavior, well, that’s just one of those things. Staying busy and engaged is paramount.

A second reason for rebellious behavior is probably not unique to autistic youngsters. Part of growing up and becoming a fully independent person is to test one’s abilities and to discover where are the limits (as set by our culture or our own abilities). What distinguishes autistic behavior in this arena, I’m guessing, is that we tend not to see (or care too much about) the social limitations. In fact, even if we are aware of those limits, we may be tempted to see how much we can get away with. It’s a bit of a game.

In high school, a friend of mine and I schemed about how we might be able to get away from school for a bit during the day. I suggested that I might be able to get Miss Williams to give us a “downtown pass” if I told her that we needed to pick up some supplies for our laboratory experiment. “Really?” he looked incredulous. Our newly-minted teacher had come to New England from the deep south, where she had undoubtedly attended segregated schools. She was smart, caring, and eager to please, and I’m embarrassed (now) to say that I took advantage of that.

Armed with our “pass” my friend and I snuck through the woods (we knew the Principal would never buy that one!), and went over to the Wine Cellar on Elm Street, where we each plunked down a dime for an Orange Nehi soda. “You fellows sit on the steps and drink those,” warned Dave Bodner, the owner, “you didn’t give me the 2¢ deposit, and I don’t want you running off with those!”

We repeated this ramble several times, until one day Miss Williams pulled us aside. “I’ve been talking to the other teachers in the Teachers’ Lounge,” she said. “There’s no such thing as a downtown pass, is there?” She looked very hurt. “No,” I admitted, and I felt horrible. I still do, to this day, when I think about what I did. It also makes me laugh, though, I have to admit!

Another example comes from my year in sixth grade. I was completely bored, and tended to skip class whenever I could arrange a violin lesson or any other excuse to get out of the classroom. I also tended not to do my homework. In addition to what I now understand as being a lack of executive function (the ability to organize and plan), and perhaps other factors related to being autistic, I found the homework to be an extreme waste of time. I instantly understood all the material that was presented in class, and having to write about it or do problems seemed to me to be unhelpful and boring. So, I often wouldn’t do the homework assignment, and then mumble something about forgetting it at home.

At one point, I knew that I had reached the limit of Mr. Brown’s patience, and could not fail to do another assignment. Yet, I also felt I could make a point. So, I wrote the paper that was called for, and then carefully put it about two layers down from the top of my very messy desk. When it came time the next day to turn it in, I said I had done the work but had forgotten it at home. As expected, Mr. Brown blew up. “Come with me, young man,” he said, and led me to the Principal’s office, where he asked if I could use the phone to call home.

Yes, of course, said the secretary, and let me into a private office, pointed to the phone, and closed the door. I picked up the phone and gave the operator my home number (246-J). My mother answered. “I forgot my homework,” I explained, “and Mr. Brown wants to know if you can find it.” “Okay,” said my mother, “where is it?” “I don’t know,” I lied, “I think it’s in my room.” Why the drama of lying to my mother? Because I knew full well that Mr. Brown was listening in on the other phone.

She came back to the phone. “Is it a two-page report on the Stockbridge Indians?” she asked? “Yes.” “Well it took me a couple of minutes, but I found it under some other things on your desk.” Trap sprung. As I exited the office, Mr. Brown greeted me with, “Did she find it?” He already knew the answer, and looked a bit annoyed when I said yes. “If she found it on your desk” oops “… or wherever she found it, how come you didn’t bring it to school?” I shrugged. Let him figure it out.

I could go on with countless other ways I got into trouble for thumbing my nose at authority, but you get the idea. I seldom got into serious trouble, because I was a polite boy who excelled as a student, among other reasons. But it was a game I liked to play, and I took it seriously.

Yet another reason for being rebellious is that being naughty may make us feel more like the other kids. I was often the “teacher’s pet” because I was such a model student. I felt sorry for my four younger siblings, who, in our small town, came upon teachers who in prior years had me in their class. I was told there seemed to be a mantra, “Why can’t you be like your brother?”

How alienating for me to be singled out! I already felt different and apart from my classmates, and this was but one more wedge. In response, I think part of my acting out was the hope of gaining the acceptance I felt was lacking.

David Finch, in his new book, The Journal of Best Practices (Scribner 2012), talks (on page 11, for example) about being a clown for that reason: “I get high from making people laugh, from performing. Goofing around with my buddies is still tremendously hard work…” but is a way of “fitting in.” Tim Page, in his memoir Parallel Play (Doubleday 2009), describes his efforts to “fit in” and figure out the social scene as a youngster. In his Chapter Six (pp. 93 ff.) he tells of sex, drugs, and rock-and-roll in the college town where he grew up.

When I was young, I was often the “class clown” because of my sharp, quick wit, and also perhaps because I was clueless as to whether I was offending anyone. If I got a laugh, that made me feel accepted. Some of that laughter undoubtedly was at, not with, me. Still, being laughed at felt better than being ignored. A few years ago, I conducted a workshop on humor at an AANE conference, and got lots of positive feedback. It also generated some commentary from Aspergerians in the audience about how they had trouble understanding jokes. In my experience, this represents a fairly small minority of the autistic population, but I have only anecdotal evidence. I also wonder if the proportion is any different from in the general population. Research for another time…

Back to Steve Jobs. By the time he was in third grade, he “was already starting to show the admixture of sensitivity and insensitivity, bristliness and detachment, that would mark him for the rest of his life.” I can identify strongly with this personality description, and I suspect many (if not most) other autistic people can as well.

In my life, there were many adults who had a huge influence on me, who took the time to care and to guide and support me. This, I know, is a common experience, not at all confined to autistic kids. Still, for someone who is autistic and therefore somewhat clueless relative to other kids, this kind of attention can make the difference between having direction and drifting. For Jobs, the first such adult seems to have been his fourth grade teacher, Imogene Hill, known as “Teddy” [page 13]. She became, Jobs said, “one of the saints of my life” and “I learned more from her than any other teacher, and if it hadn’t been for her I’m sure I would have gone to jail.” As a result of tests ordered by Mrs. Hill, Steve skipped fifth grade. “The transition was wrenching. He was a socially awkward loner who found himself with kids a year older.” In this new setting, “Jobs was often bullied…”

Autistic kids, because of their gentleness, social awkwardness, and the fact that they live inside their heads, are easy targets for bullies, and generally have no idea how to protect themselves.

The narrative then [page 15] moves on to cover Steve’s exposure to religion and a visit to his father’s family farm in Wisconsin. “Reflecting years later on his spiritual feelings, he said that religion was at its best when it emphasized spiritual experiences rather than received dogma.” I grew up in that tradition, in a very Unitarian-oriented Congregational Church. We were encouraged to take our own lessons from the scriptures, and to judge the ethical teachings of Jesus on their merits, not dependent on them having a divine origin. It sounds like Jobs had come to the same conclusion, when he was 13 years old.

One summer … [Steve] saw a calf being born, and he was amazed when the tiny animal struggled up within minutes and began to walk. “It was not something she had learned, but it was instead hardwired into her.

Already he was thinking in software/hardware terms!

He had few friends his own age [in 9th grade] but he got to know some seniors…

Now, that is pretty close to a diagnostic criterion for autism: not being able to make friends among one’s age peers. To add a clinching example of this tendency, the author talks about one of the legendary teachers in Silicon Valley at the time, John McCollum:

McCollum believed in military discipline and respect for authority. Jobs didn’t. … McCollum later said, “He was usually off in a corner doing something on his own and really didn’t want to have much of anything to do with either me or the rest of the class.”

Next: Chapter Two Odd Couple: The Two Steves

Apr 11

Massachusetts Autism Awareness & Acceptance Month Proclamation

At the Massachusetts State House on April 9, 2012, I was given the distinct honor and privilege of making an award to our Governor. During the ceremony, His Excellency Deval Patrick presented a Proclamation to the sponsoring organization, AFAM.

The 2012 Proclamation was the latest version of a document that has evolved over the years, as new data has become available, and as understanding of autism has increased. In keeping with increased awareness and understanding, language has also evolved. As the Proclamation states, nearly two years ago, Massachusetts joined the many states that have recently mandated insurance coverage of autism as a medical condition. Autism is no longer considered a mental health disorder.

We have moved away from the “pity model” of portraying autistic people as helpless and completely disabled. While it is certainly true that there is a segment of the autistic population who need (and deserve) intense interventions and continuous care, it is also true that there are many autistic individuals who are perfectly capable of making their own way in the world; holding down jobs, obtaining academic degrees, marrying, and raising families. And everything in between. Just like the rest of the world.

There is no question that those of us who are autistic face many challenges associated with our disability. Some of us do better than others at overcoming those challenges. It is the role of the Massachusetts Special Commission Relative to Autism (of which I am a member) to identify the services that currently do not exist that would aid autistic people in their quest for full participation in society. The 2012 Proclamation repeated language that had been in the 2011 version, “…to promote an environment of acceptance, respect and inclusion for autistic individuals…” In Commission meetings, we have discussed the need to “presume competence” of autistic people, rather than to assume they are defined by their shortcomings.

In my presentation to Governor Patrick, I made the following remarks:

Your Excellency,

What an absolutely perfect honorific for you!

You have lived a life of service.

With your words and by your example, you have inspired me, as well as many other people in this room and throughout the Commonwealth — and beyond.

Your actions have broadened opportunities for all people, and we are especially grateful for your efforts on behalf of those who have experienced barriers and exclusion for any reason.

Because you have been an outstanding Governor, all citizens of the Commonwealth are better off, and those of us in the disability community in general, and the autism community in particular, are grateful for what you have done.

I am proud to call you a friend.

It is a great personal honor for me to present to you the AFAM Impact and Achievement Award.

Mar 19

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 Wired, The Geek Syndrome. Obviously, 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

Mar 18

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

Mar 17

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

Mar 13

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.