The Importance of Voting on November 6

The importance of voting on November 6 

[A downloadable pdf version of this post is available here.]

Much is at stake for the disability community

by Michael Forbes Wilcox

 

Never Underestimate the Power of Your Vote

Many elections are decided by only a few votes. Recently, in one contest for the Massachusetts House, the election ended in a tie! Any seasoned observer of the political scene will agree that we should never take any election for granted. Enthusiasm can win an election, just as apathy can lose it.

Never Underestimate the Power of Community

According to the most recent data available from the US Census Bureau, nearly 20% of the country’s population self-reports being disabled. Almost 30% of all households have at least one member who is disabled. Add in other relatives, friends, and support networks, and it’s pretty clear that people who care about disability issues are a huge percentage of the voting population.

Educate Yourself on the Issues and the Candidates

Knowledge is power! There are many issues, critical to the disability community, being debated in this election cycle. At the national level (including the Presidential election as well as the race for US Senator in Massachusetts), policies and programs around such things as Medicare, Medicaid (MassHealth), and Social Security are all very important to people with disabilities. Find out what positions each candidate has on these key issues. There are many other issues as well, including full funding for the IDEA (special education act) and the recently enacted Affordable Care Act (healthcare reform).

Of concern to many in the disability community is the Congressional House Ways and Means Committee’s proposal that would have a dramatic impact on long-term care for individuals with disabilities. Regardless of where you stand on the political spectrum, you need to be aware of the implications of this proposal for people with disabilities. According to The Arc (US), key elements would be:

* An $810 billion cut in Medicaid over 10 years (a 33% cut);

* Medicaid would be converted to a block grant to the states;

* The elderly and individuals with disabilities represent 25% of Medicaid beneficiaries, but represent 2/3 of Medicaid spending. A 33% cut to the Medicaid budget would disproportionately affect individuals with disabilities.”

There are also many local races, like those for Massachusetts Senator and Representative seats, that will elect people who will have a say in how the Bay State budget looks in the coming years.

In addition, there are three ballot initiatives (questions) to vote on this year, including one on assisted suicide, which some disability groups oppose.

Know How You’re Going to Vote Before You Get to the Polling Place

You should have your mind made up before you cast your ballot, whether it is at a voting (polling) place, or by absentee ballot. This will reduce the stress of the process and ensure that your vote is used to best advantage.

Resources

Most disability groups have positions on issues that are important to them. By law, however, they cannot support candidates directly, so you will need to get that information from other sources.

If you have access to the internet, there are plenty of websites that have information on the voting process, the issues, and the candidates. A list is provided for some of these at the end of this article. A simple web search will find many more.

Also, the Disability Law Center (DLC) of Massachusetts (dlc-ma.org) has a Voter Hotline. Call 1-800-872-9992 anytime to get information on the mechanics of voting, and on election day, you can call if you have any problems with getting to your polling place (they can arrange a ride) or if you encounter any barriers to voting, such as accessibility, or language, or anything else.

Here is a short selection of the many topics covered on the DLC website:

  • You must be registered to vote. Call the DLC or your town or city clerk for more information. Braille forms are available from the DLC. You can also get detailed information on the state website at http://www.sec.state.ma.us/ele/eleifv/howreg.htm or phone 1-800-392-6090

  • The deadline for registering is October 17. You can register in person or you can request a form by mail.

  • You can vote by absentee ballot if you expect that on Election Day (November 6) you will not be able to get to your polling place in person.

  • All voting (polling) places must be fully accessible, including the voting booth.

  • You have the right to be assisted, and to be free of intimidation or discrimination.

  • Voters under guardianship still have the right to vote unless the guardianship was set up to expressly take away this right (that is rare).

Website (Internet) Links

Secretary of the Commonwealth, Elections Division has lots of information, including where you vote, how to vote by absentee ballot, and the ballot questions: http://www.sec.state.ma.us/ele/

Disability Law Center http://www.dlc-ma.org/ then click on “Information” and then “Voting”

The Arc of the US- has a page with links to many issues that affect people with disabilities:

http://www.thearc.org/page.aspx?pid=2669

The National Disability Rights Network has a page on their website with links to 15 different areas of concern: http://www.napas.org/en/issues.html

The Boston Globe offers a voter’s guide that will list which candidates are on the ballot at your polling place, and gives information on their backgrounds and positions, with links to campaign websites, when available. http://c3.thevoterguide.org/v/boston12/

Finally, feel free to call on me. If I can’t answer your question, I will find someone who can. My email is mfw {at} mfw(.)us and on Twitter I’m @mfwilcox.

 

Editor’s Note: Michael Forbes Wilcox, a resident of western Massachusetts, is a member of the Massachusetts Special Commission Relative to Autism, the Board of Directors of the Asperger’s Association of New England (AANE), and the Executive Committee of Advocates for Autism of Massachusetts (AFAM)

 

This article was written for the Fall 2012 issue of Advocate, the quarterly newsletter of The Arc of Massachusetts.

More on the Mystery of Executive Function

Those of us who are neuroexceptional are known to have difficulty with many of the cognitive processes that fall under the general rubric of “executive functions.” Why is that? If I knew that answer to that, there would probably be a Nobel Prize waiting for me. Still, I have given this a lot of thought. My interest is a pragmatic one. Through intense self-analysis, I have gained control over some of the important executive functions (such as impulse control and emotional regulation), but I still am frustrated by other aspects (such as task planning and initiation).

In an earlier post, I recorded an (uncharacteristic) triumph over my bank statements. That victory was short-lived, and I am now back in that limbo of not knowing exactly where all my finances stand. This is not to say that I don’t pay bills as they come due, but I certainly don’t do it in an organized and optimal way; I have only a vague sense of anticipation and planning.

Why is this kind of planning so difficult for me? I sometimes use my poor sense of personal finance as an example of how autistic brains struggle with this thing neuroscientists call “executive function.” It is for me an ironic shortcoming because I made my living as a financial analyst. I could invent new investment products and strategies for clients to help them meet their goals. I could use my computer-modelling prowess to scan the world’s markets and tell which countries’ bond markets offered the best risk-adjusted value, where foreign currency exchange rates were most likely headed, which stocks in the S&P 500 index were cheap by historical standards, and so on. Yet, I could not keep my checkbook in balance.

Often as not, when I offered this example, people would look at me, puzzled, and say, “But lots of people have trouble balancing their checkbooks. What is so autistic about that?” And, they have a point. There has to be more to it than that.

As should be clear by now, I identify as being autistic. I began this post with the more general term “neuroexceptional” because I realize that there are many people with different diagnoses who share a similar neural structure, and one that is very different from those who are “neurotypical.” I will have more to say in another post about the neural similarities of autism, schizophrenia, bipolar, and some forms of dyslexia. Clearly, these are very different from each other in terms of behavioral outcomes as well as being very heterogeneous from the point of view of neuroscience, yet they all stand apart from the neurotypical brain structure, and may share some common characteristics, such as difficulty with executive functioning.

The mystery of executive function is multidimensional. I’ve recently read a couple of things that may shed light on this mystery, but before I comment on those, let me take a moment to better define what is meant by and what is covered by the term.

“Executive functions” is an umbrella term for functions such as planning, working memory, inhibition, mental flexibility, as well as the initiation and monitoring of action. [Chan et al]

The study of executive functions falls under a field known as cognitive neuroscience. A related field (about which more in a moment) is computational neuroscience. To oversimplify, executive functions arise from the prefrontal cortex, which is the last part of the brain to have evolved in humans. Right below that part of the brain lies the anterior cingulate cortex, which seems to be implicated in brain imaging studies as the source of some of the different behaviors associated with autism.

It is thought that the development of these parts of the brain is what has given homo sapiens the right to its name (“wise”). Humans are able, perhaps better than any other species, to use these newer parts of the brain to override signals that arise in earlier parts of the brain. Which is not to say, by the way, that older parts of the brain have not evolved. At one time, scientists speculated that emotions arose in the older parts of the brain (collectively known as the limbic system), and that intellectual functioning was centered in the cortex (the outer layer and newest part of the brain). This is now known to be an oversimplification, since these regions of the brain interact with each other in complex ways. Still, for purposes of this post, it may be helpful to accept this distinction.

The purpose of executive functions, then, is to evaluate (and potentially override) the impulses that first arise in other parts of the brain. As an example, it is clear that xenophobia was programmed into the human psyche eons ago. It is a subset of those reactions (“fight or flight”) we experience when we encounter something that is “off” – I see this behavior in my horse when I go for a ride. If we are riding along a familiar trail, but something has changed, he will shy away from it. I’m amazed at his visual memory, but of course it arises from a keen survival instinct. Similarly, it may be that when we encounter a person for the first time who does not look like us (different skin color, different clothing style, different behavior), we may shy away from that person. Does this mean we are prejudiced? No, it means that our limbic system is doing its job of alerting us to a potential danger. We can consciously choose to override that reaction if our cognition tells us that the person is not dangerous, but just different. If we end up treating the person as a danger or as an “other” (inferior) without just cause, then we are acting in a prejudicial way. Prejudice, then, is a cognitive decision, though of course it might be operative at a subconscious level.

Many other examples could be given, but suffice it to say that “the optimal deployment of executive functions is invariably context-dependent.” This means that every decision we make will be influenced by our experience, our values, and our reasoning power. This might be a good place to slip in a discussion of “wisdom” (which may grow as we age and acquire a larger storehouse of experiences), but I will use my executive functioning to override that impulse, and save that discussion for a later post! 🙂

Notice, however, that I did slip in the word “values” and this is where computational neuroscience comes in. A full discussion will have to wait for another time, because I want to focus on the subject at hand. The thoughts that follow were inspired by the book Why Choose This Book? by Read Montague.

In his Introduction, Montague states that our minds “are quite literally valuation machines.” He says that computational neuroscience “stands on the shoulders of evolutionary biology.” And, since that’s another of my interests, it all fits very nicely for me. He goes on to “propose a new guiding idea – efficient computation.” Essentially, the rest of his book is full of examples and explanations of how efficiency in the brain is both a physical property (using, for example, as little energy as possible) and a goal- (value-) oriented activity.

The point of this essay (yes, there is one) is that Montague’s book led me to think in a different way about why executive functions might be so difficult for the autistic brain. I say “different” because I already had done plenty of speculating about this subject.

My autism diagnosis came to me late in life (at age 61, just 5 years ago), and started me on a journey to redefine in my own mind who I am and where I came from, both psychologically and in terms of my inheritance. Many of the quirks that had annoyed and puzzled me all my life came suddenly into sharp focus, and I began a journey of self-awareness, self-understanding, and self-acceptance. All of this brought a sense of peace that I had never before experienced.

Despite my new cognizance, my problems and challenges did not disappear. The brain is plastic (it can be changed, or rewired), especially so the autistic brain. Yet, change does not come easily. I spent long hours of introspection, set goals for myself, and purposefully changed my attitudes and actions. I also had the aid of two different therapists and a partner who was willing to do mirroring with me to help me become a better listener, and to acquire an awareness that I did not have a monopoly on reality.

I attended conferences and seminars, I read books, blogs, and academic papers. I spoke to many different audiences, participated in panels, and helped teach a graduate-level course; learning as much from the questions and comments I received as I did from my own preparation.

When all was said and done, I felt I had a good understanding of how I had overcome my shortcomings in many areas of executive functioning, such as impulse control and emotional regulation. Yet, more remained to be done, and I was mystified as to why I was not able to make more headway.

Somewhere in Montague’s discussion of how the brain functions (not physically, but when thought of as a computing machine), a light went on for me. I’ll have a post with quotations from his book and more about what I learned from it, but for now let me just focus on one aspect. Without getting into an extended discussion of it (see pages 60-62 and 279 of the book), let me just highlight his observations that “the prefrontal cortex plays a role in working memory, task or context switching, and executive control related to both.” He combines this with the concept of a “virtual machine” (which traces its roots back to the autistic genius Alan Turing), a concept that “blurs the the distinction between a device and an algorithm.”

…the prefrontal cortex is capable of cycling through entire virtual machines for solving particular problems; each machine would use its own working memory contrived for a task, would have some kind of executive control, and would be able to task-switch … This is of course just a speculation on my part…

In my words: our brains cycle through a series of “what if?” scenarios, tries to predict the outcome of each, based on our experience and knowledge, and evaluates each one based on how close it would bring us to our goals. We are then poised to take the action that makes the most sense under the circumstances.

Unless, that is, you are autistic, and cycling is not an easy thing to do. If the brain gets stuck on one scenario and analyzes it to death, the cycling, for all practical purposes, comes to a halt, and indecision is the result. We have clearly entered the realm of speculation piled upon speculation, so the mystery of poor executive function remains just that. Yet, I feel that I have found fertile ground for further cogitation, and will report back when I have had some time to stew on it.

 

On Beyond Brain Plasticity

What is the Basis of Our Emotional Style?

Is it a birthright, based on our genetic inheritance, or is it something we develop as we age? The answer, perhaps not surprisingly, is “both.”

In recent years, the old debate over nature versus nurture has taken a new twist.

It was once thought (not that long ago) that one was born with all the brain cells one would ever have, and that one’s genetic inheritance was pretty much the last word on the person an infant was to become.

Not so, in either case, it turns out. Our brains develop and change as we age and learn. Neural connections can become stronger or weaker; and new cells can appear, to replace damaged ones or to expand an area of the brain that is being heavily used. Even more dramatically, it has been clearly demonstrated in a wide variety of studies that even the genetic component of our brains can change over time. Our DNA itself doesn’t change, of course, that is our inheritance, but its expression can be enhanced or suppressed by life experience, including intentional experience (i.e training).

Here is an ancient (2004) talk on brain plasticity, given by Michael Merzenich, a neuroscientist who “studies neuroplasticity – the brain’s powerful ability to change itself and adapt” (NB someone who wasn’t with it created a URL with the word “elastic” in it – which is, amusingly, the opposite of “plastic”!).

This is my third in a series of posts based on “Emotional Styles” described in the book The Emotional Life of Your Brain, by Richard Davidson with Sharon Begley, Hudson Street Press, 2012. The first and second of this series addressed my speculation that there is a distinct autistic personality style, but my takeaway from this book is that it cannot be identified as simply as by ranking a person on the emotional styles described by Davidson.

What, Then, is the Connection With Autism?

Even my casual readers will know that the amateur neuroscientist in me springs not from a random late-life academic pursuit, but is born of my deep interest in understanding my own origins and how I fit into the world. I am reading books, watching videos, attending conferences, and questioning experts because I want to know what makes me tick, what it is about being autistic that has made my life better or worse, and why. And, even more importantly, how I can use that knowledge to bring deeper meaning and fulfillment to my life, both directly and through the satisfaction of helping others.

Beyond that, I’m having fun! It is very exciting to have new worlds to explore, new myths to fathom, new horizons to reach for. There is something pleasurable about stretching my mind, and every “aha” is rewarding. I’ll probably develop more insight into why that is so, too!

I love it when patterns begin to emerge. It’s almost as exciting as anticipating the next symmetry event on my odometer. While reading the book that is the basis for these essays, I am regaling in the examples of brain function, which compliment and extend what I have already learned from other sources.

The Important Role of the Prefrontal Cortex

One such observation is the confirmation that the prefrontal cortex plays a huge role in many neural differences that I have come to associate with autism. Early in life (almost certainly in the prenatal period) the autistic brain takes an atypical developmental pathway. Brain size (and perhaps body size) seems to be somewhat larger for autistic people. There is a delay in myelination in the autistic brain, which may explain many of the features of autism.

It’s still hard for me to grok how much the behaviors we associate with autism come from delayed development versus how much comes from the secondary effects of such delay. By this I mean that delays in the appearance of certain abilities (as compared with neurotypical [NT] people) might create feedback conditions that influence development (usually in negative ways). I will have much more to say about this at a later time, but don’t want to get sidetracked here.

Suffice it to give one example from the book [page 68]: “… the prefrontal cortex, site of such executive functions as planning and judgment, controls how emotionally resilient people are.”

It is well known that this part of the brain is the last to fully develop. Even in NTs, significant changes and development go on well into the late 20s or even early 30s. Not that many generations ago, life expectancy wasn’t too much longer than that, which may be why so many cultures revere and respect elders; they were the rare ones whose cranial capabilities had reached the level of integration and understanding that is known as “wisdom.”

Here’s where it becomes hard to distinguish the cause or source of certain behaviors. I am, for example, swift to indignation. I am even quicker to blame – it’s almost as if I really believe I’m perfect, and therefore anything that goes wrong in my life must, by definition, be someone else’s fault, or the fault of the world at large. I mention these foibles not just because I experience them; I know from talking to many autistic people that these are shared tendencies.

Now, is my defensiveness (one might even say paranoia) a result of my autistic wiring, or it is a result of my life experiences? And, by extension, would the same be true of my fellow autistics? It could be some of each, of course, but I’m inclined to think it’s a deadly combination of being easily confused by the strange world in which we find ourselves and the fact that we have been told (probably every day of our lives) that we are doing something wrong. It’s not too hard to see how that could produce a defensive reaction, and create an underlying rage at a world that is not only unfathomable but unfair. When you feel unjustly accused of wrongdoing with incredible frequency and consistency, it’s hard not to start from a place of anticipatory aggression.

Obviously, this is all material for another essay. Let me just mention, before moving on, that one of my most difficult (and most rewarding) learnings has been to engage in a conversation –  after I think (know!) I have been wronged –  with a friendly, polite, and open mind.

Left Brain, Right Brain – More Complex Than Pop Science Would Have You Believe

Of perhaps even more interest than the role of delayed development to me is the hemispheric differentiation that may give even more clues to what is different about the autistic brain.

I will continue that discussion in the next post of this series. Here is a preview:

I’m coming to the suspicion that there is asymmetric delay in the development of the autistic brain. That there is delay has long been known. The left side of the prefrontal cortex seems to develop more slowly in autistic brains. This is associated with higher shyness, depression, and discontent. It is also associated with lower communication and social skills, though that is more likely to be centered in Broca’s area, also a left-side part of the brain (which is also thought to be rich in motor neurons).

Much, much more to come. Stay tuned!

Never far from my mind is one of my favorite quotations: “Ce que nous connaissons est peu de chose, ce que nous ignorons est immense.” (That which we know is tiny; that of which we are ignorant is vast.)

Is There An Autistic Personality? Part II

In which I continue my unscientific search for common features of the autistic personality.

In Part I of this series, I noted several discordances between autistic characteristics, as I see them, and standard personality types. I believe these will prove to be the keys to understanding (hey, wait, don’t keys “unlock”? – add that to the list – literalmindedness!) how an autistic person (especially an adult) might be identified in a reliable fashion.

As so often happens with speculations such as the one I recently made, “Is There An Autistic Personality?” I have discovered that things are not as simple as I had hoped. I do believe I am on the right track, and I will keep pondering this question.

What I have determined, however, is that if there is, as I believe, a personality style that is a tell-tale sign that a person is autistic, it will not be based on the “Emotional Style” described in the fascinating book The Emotional Life of Your Brain, by Richard Davidson with Sharon Begley, Hudson Street Press, 2012.

I will tell you why, and I will tell you more about this book, which offers much insight into how the human brain creates and processes emotions.

As I delved into the details of the book’s description of the six dimensions of emotional style, I ranked myself with some fun questionnaires provided by the author. As I did so, I thought about other people I know, both autistic and not, and how they might fall along the continua that were presented.

My conclusion is that, as with many other characteristics, autistic people probably have just as much variability as do neurotypicals. The quizzes were designed to produce a number between 1 and 10, and here is how I rated myself (I am fully aware the results might have been influenced by how I want to be, but I did do my best to be objective!).

  • Resilience: 6 – slightly slow to recover
  • Outlook: 8 – mostly positive
  • Social Intuition: 10 – extremely intuitive
  • Self-Awareness: 9 – highly self-aware
  • Sensitivity to Context: 9 – highly tuned-in
  • Attention: 4 – slightly unfocused

I believe these rankings are fairly accurate (I would be interested in the reaction of people who know me well!). Yet, there is nothing here that screams “This is an autisitic person!” In part, this may be because I have worked hard over the years to change some of these dimensions, and probably I have succeeded. As one of the commentators on my previous post, Lucy MB, pointed out, one could get very different rankings by transporting oneself back in time.

The author of this system is quick to point out that none of these characteristics is good or bad in and of itself. “Only if your Emotional Style interferes with your daily life and constrains your happiness, only if it prevents you from reaching your goals or causes you distress, should you consider making an effort to change it.” [page 12] He also adds that “Civilization couldn’t flourish without different emotional types, including the extremes – we need all types.” [page 11]

And, one of the major points of the book is that we can change our brains. The author cites [page 10] a study conducted by Alvaro Pascual-Leone of Harvard University, to support his contention that “the amazing fact is that through mental activity alone we can change our own brains.” [page 11] This is fun for me because I know Alvaro, and have spent many hours in his TMS Lab in Boston, as a subject for studies done by his research associates.

To circle back to the connection with autism (if any), the author states [pp. 54-55] that “Self-Awareness … can be beneficial in several ways. It appears to play a crucial role in empathy…” and “High Self-Awareness can also extract a cost, however. Someone … who observes the pain of another will feel that person’s anxiety or sadness in both mind and body…

I know that I am a highly empathic person, and most autistic people whom I have asked about empathy feel that they share that characteristic. Speaking for myself, and supported by others who agree with me, I believe that the myth that autistic people are not empathic arises from the observations of others who see us responding with little or no outward emotion. What in fact happens is that when we see another person, or a non-human animal, in distress, we are so overwhelmed by emotion that we shut down emotionally so as not to experience the pain.

I oversimplify, of course, because there are other aspects of the dynamic, including our own experience of what happens if we express our emotional distress. More likely than not, we were told that what we did was wrong. So, we may choose, if only intuitively, to avoid any reaction so as not to be scolded or punished for it.

Empathy: a topic for another day!

Part III: On Beyond Brain Plasticity

Fledging From Free Food to Freedom

Yesterday was fledging day at my house. For several weeks, as I awoke at first light, I was greeted by the chirping of what was clearly a large crop of nestlings, as their parents brought them their breakfast. Finally, the day had come for them to leave the nest and fend for themselves.

What is it that makes creatures realize that the moment has arrived? A couple of years ago, while on vacation in North Carolina, I was treated to the sight of a sea turtle nest undergoing what is called a “boil” – the frenetic activity of hatchlings rising through the sand to the surface and heading down the beach toward the ocean. A single nest can contain dozens of eggs, and they sit there doing their thing for several weeks. Then, of a sudden, all of the wee ones know that the time is upon them – they break through their shells and claw their way to the surface. How is it that they all do this within minutes of each other?

Similarly, what was the signal that told the little birds above my bedroom that it was their time to fly? Instead of their usual gentle chirping, there was a clamorous scramble for the exit. Their nest is situated behind the gable above the windows of my bedroom. There are ventilation slits, and between these and the attic is a screen to keep critters out, but there is just enough space there to construct a nest that is well-protected from the elements.

Judging from the noise, the space must have been fully occupied. As they all scrambled to escape the small confines of the nesting area, there was much squawking and jostling. Then, one by one, a missile would drop past my window and find its way to the nearby maple tree. They all gathered together on the tree, hopping from one branch to another. Then, as if by signal, they all launched themselves into space and tried out their new aeronautic abilities.

Most seemed to do quite well immediately, but two or three were a bit disoriented. A couple of them flew back toward the nest, and mistook the lights of my windows to be open air. Fortunately, they had not built up much speed in the few feet from the tree to the house, so their discovery of the hardness of glass did not seem to harm them at all. My house is oriented to true north (built by a Freemason, no doubt!), and my bedroom is at the south end. I also have a window on the west side of the house, and despite the fact that the blinds were drawn, I could see the shadow of one of the birds as he fluttered against the glass, trying to get in. After a few vain attempts, he gave up and joined his nestmates on the tree.

I’m not certain what species my temporary tenants were, though they could be phoebes or some similar bird. I was reminded, by their evident joy, of a similar incident I witnessed in my youth. As a teenager, I had a job working at the Garden Center in Stockbridge (now known as the Berkshire Botanical Garden), and one day, as I was mowing the lawn, I paused to watch some young swallows who had obviously just fledged. They flew high into the air and then plunged straight down, only to swoop back up just before they reached the ground. They flew in circles and then repeated the whole performance, weaving among and between each other in a glorious celebration of being alive.

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.

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.

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.

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!                                             

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