Feb 04

Quantitative Support Claimed for the Intense World Theory

The Intense World Theory of Autism is an appealing one to me, because it describes my experience, and resonates with much that I have heard described by other autistic people.

It was pleasing, therefore, to learn of new research that seems to offer some empirical support to this idea, and perhaps a partial explanation about what is different about the autistic brain that could explain the intense experience.

Still, I find myself being more than a little skeptical about the claims and explanations being made. Some of the statements made about this research appear to me to be self-contradictory, although that may be coming from the reporting of the studies rather than in the research itself.

And, like too much research these days, it leaves me with the impression of a sales pitch for the next grant, with sweeping claims being made based on small samples.

All that said, I want to believe the claims and explanations given, so it’s worth commenting on them, even though it is clear to me that we have only just begun a long journey on the way to understanding what it going on inside the autistic brain.

In a post on the Medical Express website about a year ago, headlined as “Detecting autism from brain activity,” it was announced that “Neuroscientists from Case Western Reserve University School of Medicine and the University of Toronto have developed an efficient and reliable method of analyzing brain activity to detect autism in children.Red Flag #1. Why children? Or, why just children? I don’t know if there has ever been a literature study to determine what percentage of autism research has been devoted to children. My guess is that it is a very high number. Yet, autistic children grow up to be autistic adults, and what is true of children may or may not be true of adults. Some work I’ve seen by the Nancy Kanwisher Lab suggests to me that many earlier studies of children may have missed the boat in (at least) one important aspect.

In many, if not most, of the studies of children I’ve seen, the autistic kids being studied are compared with a “control group” of neurotypical (NT) children, which is carefully matched for such things as IQ, gender, and age. Problem: one of Kanwisher’s studies that measured a certain skill discovered, as expected, that autistic children did not perform as well as their NT counterparts. Yet, when the data were plotted on an age graph, it was clear that both groups improved over time. Even more striking, the scores and rate of improvement were almost identical if one shifted the age scale by 12 to 18 months for the autistic group. In other words, the autistic kids were every bit as talented, but it took them a year or two longer than their NT counterparts to develop the skills.

By the time they are adults, my guess is that there is no discernible difference. This reminds me of the debate that was raging a few short years ago as to whether there was a meaningful difference between what was called “high-functioning autism” and Asperger Syndrome. I asked a psychiatrist friend of mine if he had an opinion, and he responded that technically, the difference was the age of language acquisition, but by the time people reached adolescence there was no detectable difference, so it really wasn’t a very meaningful distinction in pragmatic terms.

Back to the brain activity test: Red Flag #2. The study claimed to be able to detect autism with “with 94 percent accuracy.” What does this claim really mean? I suspect it is tied to Red Flag #3, which is that they studied only 19 children. If they were “wrong” about only one of these children, that would mean they correctly identified about 95% of the group. Of course, that assumes the kids were labeled correctly in the first place, which is a potential source of error that was not mentioned in the short write-up.

I’m not a neuroscientist, nor am I a statistician by trade, although I did have a long and storied career as a financial economist, and statistical analysis was an essential tool in my bag of tricks. In order to make meaningful statistical inferences, one needs a confidence interval and some measure of potential error (called a confidence level). A single number is meaningless. In fact, “It is crucial to know the confidence level associated with a confidence interval: The interval by itself is meaningless” according to a text on statistics from Berkeley. Ceteris paribus, the smaller the sample size, the higher the error term. A sample of 19 is pretty tiny.

Sorry for the statistical digression, but I wanted to be clear why I am waving the warning flag of skepticism. It may very well be that subsequent studies will confirm these results, but I would want to see larger samples and also independent verification from other laboratories.

More to the point of relevance to the Intense World Theory, the write-up contains this statement:

Their approach also allows them to measure background noise, or the spontaneous input driving the brain’s activity while at rest. A spatial map of these inputs demonstrated there was more complexity and structure in the control group than the [autism] group, which had less variety and intricacy.

Let’s contrast that to what the same group of researchers said in a more recent study:

…this study is a follow-up to the authors’ prior finding that brain connections are different in autistic children. [The earlier] paper determined that the differences account for the increased complexity within their brains.

Now I’m confused. It may be, as I said, that these summary write-ups mischaracterized what the original papers said, so I will have to obtain some clarification on that. These statements seem to be directly contradictory.

According to the write-up of the second study,

They showed that autistic children’s brains at rest generate more information than non-autistic children. This may explain their lack of interest in external stimuli, including interactions with other people.

This may be a bit of speculative over-interpretation. I’m not sure that their observation (assuming it can be verified with larger samples, and, importantly, with adults) actually “explains” anything, especially a “lack of interest.” This interpretation strikes me as an all-too-common lack of theory of mind by the researchers. They are attributing their own state of mind to an autistic child because of externally observed behaviors. What is going on inside the autistic mind may not be predictable by such a simple analogy.

This certainly is an interesting line of research that deserves to be pursued. It seems to me, though, that it is way too early to be making some of the dramatic claims that I read in these descriptions.

I also wonder about possible comparisons with similar research being done at the University of Pittsburgh (and perhaps elsewhere) using somewhat different technology. My friends Temple Grandin and John Elder Robison have participated in that study, and John urged me to sign up (which I did, and am on their waiting list). Temple was in Boston a few months ago and showed some slides of her brain as part of her talk. The pictures suggested to me that it may be more accurate to describe the autistic brain not as “more” or “less” active or connected, but as “differently” wired.

Brain imaging and other techniques are producing information perhaps faster than we can interpret it, but I suppose that’s a good problem to have. I look forward to learning more in the coming months.

Dec 17

My Thoughts on Markram’s “Intense World Theory”

I’m delighted to see that autism is being portrayed in a positive light. Maybe more people will pay attention now that a team of neuroscientists is saying what autistic people have been describing for years. I’m totally supportive of what has been described as the “Intense World Theory” and wish to praise the Markrams for having the courage to advance this idea in the midst of skepticism and even scorn.

My interest in the Intense World Theory was piqued by a recent article by Maia Szalavitz, a science writer whose work I’m familiar with and have always found interesting, particularly when she writes about autism. She obviously writes from a deep understanding of the issues, in a clear expository fashion that is at the same time sympathetic, sensitive and understanding. She is a past master at seeking out and quoting experts on all sides of controversial items, such as this one.

All that said, I have found some of the language and statements in this piece to be objectionable. My criticisms of these things I wish to direct not to the author, because I know that there are editors involved, and also that she is often simply reporting on what authoritative people are telling her. Instead, my comments are directed to the world at large, so that my thoughts may be considered alongside what others have had to say on the matter.

I might as well start with my objection to the lede.

SOMETHING WAS WRONG with Kai Markram.

I sense the heavy hand of an editor here, honoring the sensationalism that journalism seems to ache for: “If it bleeds, it leads” is the expression. My problem with this statement is that the article is about autism, and even though most of the article is upbeat and positive, starting with this negative statement sets the tone, and is out of keeping with the entire piece.

George Lakoff has been preaching for years (in what I have seen him refer to as Linguistic Neuroscience) that the way we speak of issues evokes a whole “frame” of emotional content. To link “wrong” with “autism” in talking about a boy, for example, brings up images of dysfunctional children who are to be pitied. This is totally contrary to the message of the entire article, which is that autism is “different” and not “wrong.”

This, Markram and his wife, Kamila, argue, is what it’s like to be autistic.

The behavior that results is not due to cognitive deficits—the prevailing view in autism research circles today—but the opposite, they say. Rather than being oblivious, autistic people take in too much and learn too fast. While they may appear bereft of emotion, the Markrams insist they are actually overwhelmed not only by their own emotions, but by the emotions of others.

It’s unfortunate that “we” autistic people are spoken about as if we are not here. It would be nice to have autistic people describe what it’s like to be autistic. And it wouldn’t be hard to find such descriptions. As one example, I wrote about empathy earlier this year. And the autistic blogosphere is full of such references to how we experience the world.

The developmental disorder now believed to affect around 1 percent of the population is not characterized by lack of empathy, the Markrams claim.

Yes, that was one of the main points of my post, just referenced. So, bravo for that recognition. Autistic people have been saying that for a good number of years now. One might think that it shouldn’t take a debate among neuroscientists to recognize that. And, again, I, and many other autistics, object to the (common, if not nearly universal) use of the word “disorder” to describe autism. It is a developmental difference.

The 1% estimate is a conservative one, and is on the low end of the estimates I’ve seen lately. This year’s CDC number is “1 in 88″ children (and presumably adults) is in that range (about 1.1%), but a recent study in Korea put the number at 2.6%. The CDC also published the results this year of a self-reported parent survey that found a 1-in-50 rate (2%).

There is another important discussion, in my opinion, that goes beyond the inquiry into the prevalence of autism. Without going into detail here (I’ve commented on this before, and will do so again, I’m sure), let me just point out that there are many other conditions that are (to me, certainly, and to many scientists as well) vaguely similar to autism. I like to use the term “neuroexceptional” to refer to this group of similar profiles. People who are dyslexic, schizophrenic, bipolar, and so on are not exactly autistic (though perhaps someday all of these and more will be recognized as variations on a general class), but they are certainly not neurotypical either. My point is that the number of people who experience the world in a different and intense way may be something more like 10% (or even 15% or some other percentage) of the population.

AT FIRST, MARKRAM THOUGHT Kai had attention deficit/ hyperactivity disorder (ADHD)

Like I said. There are some who think that ADHD has been vastly overdiagnosed, but maybe it is autism that is under-identified. Speaking of autism, the article goes on to say:

… while experts now agree that the condition is neurological, its causes remain unknown.

The most prominent theory suggests that autism results from problems with the brain’s social regions, which results in a deficit of empathy. This “theory of mind” concept was developed by Uta Frith, Alan Leslie, and Simon Baron-Cohen in the 1980s. They found that autistic children are late to develop the ability to distinguish between what they know themselves and what others know—something that other children learn early on.

Here we have further usage of the “medical model” terminology; autism is a disorder that is “caused” by some unknown defect. In my view (and I am not alone here), autism is simply a different way of being in the world. So far as I know, the neuroscience community is not looking for the “cause” of left-handedness, yet being left-handed is a disability for those who have to figure out how to get by in a world that was mostly created by and for right-handed people. Leonardo da Vinci is one of the most famous left-handers (though he may not have been one congenitally) who developed his “mirror writing” (it is thought) to avoid smudging the ink as he wrote.

The quotation just given mentions a couple of the myths that have grown up around autism, [1] the imagined deficit of empathy and [2] the so-called “theory of mind” concept. While these may be two aspects of the same put-down, I like to distinguish between empathy, with its highly emotional content, and perspective-taking, which has more of a cognitive element.

Add to those two myths [3] the idea that autistic people are not adept at central cohesion and [4] that autism may be characterized by a dysfunctional mirror neuron system, and you have a nice catalog of some of the silliest things that have been said about autism. Or, they would be silly if they didn’t cause so much harm by introducing and reinforcing stigma, disrespect, and misunderstanding.

As to [1] empathy, I’ve already referenced a post of mine that disagrees with the deficit notion. It is said in the quote just given that [2] “autistic children are late to develop,” but delayed development is not the same as arrested development. Professor Nancy Kanwisher’s lab at MIT has done some very creative research documenting no difference in performance on tasks by autistic and non-autistic children when adjusted for age (autistic kids need a bit longer to develop proficiency). And, autistic subjects are able to perform identically on tasks relevant to [3] central cohesion under certain conditions. I can’t supply citations because as far as I know the work hasn’t yet been published, but I’ve seen presentations on it and read preliminary copies of the papers. Look for that to appear soon.

I’ve also written about [4] mirror neurons and my understanding of why they might appear impaired. Long before I had heard of the Intense World Theory, I wrote “…mirror neuron functioning might be impaired much in the same way many other brain functions are hindered. Sensory overload.”

There is much more in the article; it’s pretty dense with topics like the ones I’ve just commented on. I highly recommend it, and plan to study related documents and have more to say later on. I’ve touched briefly on some of the things that appear in the second half of the article, and if I were to drone on here I would begin repeating myself.

This is a healthy discussion to have, and I look forward to more engagement between the autistic community and the neuroscience community.

 

 

 

Dec 06

Ted Williams: Another Candidate for my Autism Hall of Fame?

I recently heard an interview on Fresh Air of author Ben Bradlee Jr. in which he talked about Ted Williams.

When I was young, Ted Williams and Mickey Mantle were the living legends of baseball. I played Little League ball and every young boy who was interested in baseball dreamed of being a hitter like one of those two.

As I listened to Bradlee talk about “The Kid” I began to pick up on things that I had not been aware of when I was young. Namely, traits that I now associate with my autism.

For example, the words “perfectionist” and “driven” could be used to describe many (if not most) of the autistic people I know. Similarly, the phrases “single-minded” and “in a zone” are often used to describe the intense focus that an autistic person can have when preoccupied with one or another deep interest.

Here’s is some of what Bradlee said to describe Williams:

I think sometimes to excel you have to be single-minded in your determination to succeed, and other things suffer along the way. He was that. He put family life aside and he was absolutely determined to become the greatest hitter that ever lived. He was driven to excel …

Anything he undertook he wanted to do right. He was a perfectionist and he had no tolerance for those who did things in what he felt [was] a shoddy manner. He was in a zone, really, his entire life. When you’re in a zone like that you can break a lot of china along the way.

Now, being driven and being a perfectionist doesn’t identify someone as being autistic, I think it is fair to say. But when you add in some of the other dimensions of his personality that Bradlee mentioned, it begins to complete the profile for me. That last statement about breaking china refers back to statements he made earlier in the interview about Williams being cold (to the point of being callous and even abusive) in his personal and family relationships.

And, again, I don’t mean to imply that all autistic people are cold and abusive, but it is well known that autism is associated with difficulty in navigating the neurotypical social order.

Another thing that struck me was that Williams was evidently insulted by people saying that he had “natural talent” — he felt that such was a dismissal of all the hard work he had done to become the hitter he was. Autistic people are not known for our fine motor skills. I have worked really hard in my life to become good at certain things, such as skiing. I don’t know if anyone is born with “natural talent” but I think there are some who find things they can excel at because of who they are — the way they were built. I can relate, however, to The Kid saying that he had to work hard to be good at what he wanted to do.

All of these clues are just that; they don’t prove that Ted Williams was autistic, but there is enough there that it warrants further thought. Perhaps I will have to read the book and learn more about him in order to see whether I should nominate him to my Autism Hall of Fame.

Nov 06

The Healing Power of Depression

Depression is a common experience. The word itself conjures up negativity, and has many definitions, none of which is particularly cheerful. Depression has been the subject of many wise and unwise words over the ages.

 

Henry Wadsworth Longfellow

“Every man has his secret sorrows which the world knows not; and often times we call a man cold when he is only sad.”
― Henry Wadsworth Longfellow

I cannot remember a time when depression was not my companion. Over the years, I have made peace with my companion, and depression has changed from an antagonist to a friend.

 

T.H. White

“The best thing for being sad,” replied Merlin, beginning to puff and blow, “is to learn something. That’s the only thing that never fails. You may grow old and trembling in your anatomies, you may lie awake at night listening to the disorder of your veins, you may miss your only love, you may see the world about you devastated by evil lunatics, or know your honour trampled in the sewers of baser minds. There is only one thing for it then — to learn. Learn why the world wags and what wags it. That is the only thing which the mind can never exhaust, never alienate, never be tortured by, never fear or distrust, and never dream of regretting. Learning is the only thing for you. Look what a lot of things there are to learn.”
― T.H. WhiteThe Once and Future King
Perhaps I have learned something about learning in my long years. I have never lost my love for learning. I would have made an excellent perpetual student, but somehow the need to earn a living drew me in other directions. I had many jobs I truly loved, but the best ones were the ones that challenged my intellect and required me to absorb, and even create, new knowledge. I spent many years as a quantitative financial analyst, which, in one guise or another, occupied my life from the time I was about 30 until I retired.

Over the years, I experienced many bouts of depression, some of them quite debilitating, but I was usually able to rally when it came time to go to work or school.

 

John Keats

“Do you not see how necessary a world of pains and troubles is to school an intelligence and make it a soul?”

I don’t know if I would have prescribed depression to myself as a way to form a soul, but now, having been through the fires of hell, I can see how it helped forge my character into one of steel, for better or for worse. Part of the steel that was forged in those fires makes up the ball that I pull around myself when the world is too much with me. I described this to a good friend recently. She remembered our time together many years ago and said, “Yes, I wanted to knock on it and ask you if you were still there and if you were ever coming out again.”

Part of that steel, on the other hand, went into stiffening my spine, and giving me the ability to carry on when cognition alone would have told me things are hopeless. Every human being possesses an abundance of self-overestimation, which is indeed what gives us the power to persevere when the odds are against us. But perhaps those of us who have lived through depression are blessed with an even greater sense of self-assurance that nothing can be so bad that it can’t be endured.

 

Margaret Atwood

“I don’t want to see anyone. I lie in the bedroom with the curtains drawn and nothingness washing over me like a sluggish wave. Whatever is happening to me is my own fault. I have done something wrong, something so huge I can’t even see it, something that’s drowning me. I am inadequate and stupid, without worth. I might as well be dead.”
― Margaret AtwoodCat’s Eye

The feeling of worthlessness that comes with depression is all-consuming, powerful, and enervating. It is a time when one feels unworthy to live, and it is perhaps at these times that the risk of suicide is highest. At the time, it doesn’t feel like there is too much of a distinction between feeling that one might as well be dead and actually being dead.

Even those of us who escape those suicidal thoughts and impulses, however, may never shake the feeling that somehow we are not worthy to live in this world. For me, I never made any serious suicide plans or attempts, but maybe that was more because I was afraid of failure than that I didn’t think it was a good idea.

For as long as I can remember, I knew I was different. As a youngster, I knew I was better at some things than were others, but I was also keenly aware of feeling that I did not fit in. I continually managed to get into trouble with the adult world in one way or another, and sometimes my run-ins would bring visible grief to my parents, which distressed me greatly.

As I grew out of my adolescence into adulthood, I began to think of myself as a carrier of a defective gene, and I became determined never to have children. I did not want to pass along to innocent children the agony that I had endured. Plus, I could not picture being the father of such a child, having witnessed the pain that my parents went through because of me. Years later, I was able to laugh at myself (at least a little). One time, I took a friend to visit my mother, and jokingly told of some of the incidents of my childhood. My friend turned to my mother and asked, “Mrs. Wilcox, how did you ever put up with all of that?” My mother laughed and responded, “I would do it all over again!” I was thunderstruck by that response.

Still, I never lost my aversion to having children, and it wasn’t until I was 60 years old and learned about my Asperger’s/autism that I was able to understand my difference in a more positive light.

 

Elizabeth Wurtzel

“That is all I want in life: for this pain to seem purposeful.”
― Elizabeth WurtzelProzac Nation

Now that I can look back, with the perspective of my understanding of being neuroexceptional, I can see things in a new way. I thought long and hard about what I came to call my Anxiety Cycle, which I recognized was part of my life in large and small ways every day. I might experience several in one day, and they might be overlapping. Some could end in minutes, others could drag on for days. They all started with the accumulation of stress, which triggered a reaction and a response. Inevitably, the end of each cycle was a period of depression, however brief or long it might be.

As I pondered this, and as I observed myself going through these inevitable cycles, I began to understand the purpose of depression. By the time I got to that point in my cycle (and depression, for me, does not arise from nowhere; it is definitely triggered by a cascade of anxiety, even if I can’t quite put my finger on what that was all about), I had reached the end of the road. The worst had already happened. The stress that had triggered the anxiety had already been dealt with, and depression was a time of healing, of rest, of picking up the pieces.

And that is how I came to think of depression as a friend, not an antagonist. When I get to that point, I can take a deep breath, and use my new mantra. I have taken up the phrase “this, too, shall pass” to calm myself when all seems bleak.

I should mention medication. For most of my adult life, I have sought help from a variety of psychotherapists for anxiety, behavioral modifications, and just to try to understand myself better. Some have been more helpful than others, but one common theme is that most of them suggested that I consider medication for depression or anxiety. That suggestion has also come from several medical doctors, sometimes emphatically.

I had always resisted taking medication for my depression. I felt that was treating the symptoms of whatever was bothering me, not the causes, and I wanted to understand where the depression was coming from, not to mask it.

It wasn’t until I received my diagnosis of Asperger Syndrome that I began to seriously consider taking medication. At the clinic where I was diagnosed, there was a psychiatrist who was able to explain all of the types of drugs that were available, and the effects (and side effects) that each had. I decided to try some clonazepam, and I’m glad I did. It did reduce my anxiety (that feeling of a racing heart in a constricted chest), but more importantly I think, it extended my reaction time, so that I had some time (a few milliseconds perhaps) to think about how I was going to respond before I did something rash. Being able to develop a sense of mindfulness was what brought me into the realization of how my anxiety cycle works, and how even I could learn to do emotional regulation, something I had failed at all my life.

After a few years of taking this medication, I felt less a need for it as I gained control of my own impulses and understood my natural rhythms. I now keep a bottle of pills on hand, but seldom open it. It’s there if I feel anxious, or if I know I am going into a stressful social situation, but for the most part I don’t need it.

In many ways, I have healed myself, and with the aid of some temporary medication and my new mantra, I have learned to make that healing process an ongoing one.

Nov 04

The Turing Problem

I just listened to a 20-minute radio segment that reduced me to tears. Alan Turing was a hero of mine long before I knew anything about autism. Once I discovered my own autism and began to be able to see signs of autism in people I knew, either personally or from reading about them, I began to nominate some of them to my own Autism Hall of Fame. Certainly Turing belongs there (in my mind at least).

Turing was openly gay in an era when that was illegal where he lived (in England), and he was also a War Hero, having cracked the German ciphers generated by their Enigma Machine. He met a tragic end; a life shortened by prejudice and faulty science. He may have had a lot more to offer the world; we’ll never know. He was clearly a genius whose insights transformed human society. The proof of that is before your eyes.

I’m sure many of my friends know the story of Alan Turing, but whether you do or you don’t, this podcast is worth a listen. Highly recommended.

Nov 04

Stewart’s Background

A few years ago (in 2005) I wrote up this background material on my horse Stewart. In a couple of months, he’ll be 20 years old. He is still as feisty and energetic as ever, but he has calmed down some in important ways, has come to trust me more, and our mutual affection continues to grow.

When he came to me, after retiring from his racing career, he had the nickname “Doc” which I didn’t much like. The name didn’t seem to fit his personality, which was more majestic than that. Perhaps I also had a negative association with Elmer Fudd, whom Bugs Bunny addressed with the line, “What’s Up, Doc?

I named him Stewart after my mother’s father (Stewart Archibald Forbes), in honor of both of them. My mother had been a great horse lover in her youth, and my father’s sister (and therefore my Aunt) Jane, who is now 90 years old, remembers the two of them riding together often. When my mother was a teenager, her father was the caretaker for the Highwood Estate in Stockbridge, now part of Tanglewood.

The 1986 acquisition of the Highwood estate next to Tanglewood increased the festival’s public grounds by 40 percent and allowed for the construction of Seiji Ozawa Hall, which opened in 1994 along with the Leonard Bernstein Campus, which became the center for most Tanglewood Music Center activities.

Her father’s employer was a Boston dentist. In those days (the 1920s), there was reliable train service from Stockbridge and Lenox to Boston, and my grandfather’s job was to keep fresh flowers on the tables of the house, as well as eggs and vegetables available in the kitchen when the family was in residence during the summer, and to ship fresh eggs to Boston via the train, in special metal containers, during the other months of the year.

My mother was allowed to keep two horses in the family’s riding stable on the property, and she had Morgan horses.

When I was young, the closest I ever got to a horse was on a pony ride in the church fair. My family did not have the resources to spend on such things as horseback riding or skiing lessons. I learned how to do those things later in life.

I did like to watch the horses run, though. As a teenager, I would go to the Barrington Fair, mostly for the rides. But in between trying out the midway games, looking at the 4-H exhibits and the new tractors for sale, I would go and watch the horses race around the tiny track. I was fascinated by the idea of betting, so one time I mustered up $2 in free cash and sauntered over to the $2 window even though I knew that, at 14, I was too young to bet. “How old are you, son?” asked the ticket clerk. “Eighteen,” I lied. “Go away!” he waved me off with the back of his hand. “Why?” I asked. “You have to be 21!” he snarled. I slunk away, knowing that I didn’t look 18, let alone 21, but armed with my new knowledge, I found another window and tried again. In those days before picture IDs it was a lot easier to fake it. I guess the clerks only cared that you gave the right answer, not whether you were telling the truth.

I didn’t learn to ride till I was 40 years old, but when I did I wondered why I hadn’t been doing it all my life. A story for another day…

 

Aug 01

Brain Fitness, Alzheimer’s, and Autism

An amusing and informative essay on the brain appeared in a recent (July 29) issue of The New Yorker. Entitled “Mentally Fit: Workouts at the brain gym” by Patricia Marx, the article chronicles her investigation of the “brain fitness” industry. The article is partly behind a paywall, so if you’re not a subscriber you can only read about 20% of the essay, but that’s enough to give you a flavor for where she is going with this.

Although my interest in reading about the brain and neuroscience is fueled by my obsessive need to understand myself through the lens of autism, I find that most of what is written about autism is really pretty bad. So I learn more about autism by reading about general brain functioning and then figuring out how it applies to me or to other autistic people I know, and to other things I’ve read or learned.

This well-written account is a case in point. As it happens, I am currently a subject in a brain study at the TMS Lab of Beth Israel in Boston. This study is similar to one I did four or five years ago with the same researcher, Dr. Lindsay Oberman. My friend John Robison also participated in that study, and he is the one who originally got me interested in the work of the TMS Lab. John has written his own account of what he learned from the study. At the end of that post you will find links to other comments he has made about TMS.

In a nutshell: Study Number One (4-5 years ago) decidedly proved that autistic brains have more neuroplasticity than neurotypical brains. This can be good (ability to process vastly more information, better long-term memory, ability to learn new things, and more) or bad (sensory overload, resistance to change and difficulty with transitions, and more).

MFW in TMS Lab

MFW in the TMS Lab

Study Number Two (the one currently underway) is an attempt to determine whether autistic brains age differently from neurotypical brains. Specifically, one of the issues being studied (besides looking for changes in plasticity or anything else that is measurable) is whether the superior plasticity of autistic brains naturally protects autistic people from Alzheimer’s. One of the control groups being studied is an age- and gender-matched group of neurotypicals and another is a group of Alzheimer’s patients. As Lindsay explained to me, “the Alzheimer’s brain is the ultimate elastic brain.” (In this context, elastic is the opposite of plastic — an elastic brain is resistant to forming new memories.)

[Disclaimer: I am not a neuroscientist, so my understanding of what is going on in these studies may very well be incomplete. I am simply reporting my interpretation based on conversations I’ve had over the past several years, as well as reading I’ve done.]

Back to The New Yorker article: these are the subjects Ms. Marx addresses: neuroplasticity and Alzheimer’s (dementia in general, really, but she mentions Alzheimer’s many times). Specifically, can we (humans) maintain or even improve our neuroplasticity (ability to learn and remember) as we age, and therefore (perhaps) avoid the deterioration associated with dementia, while improving our enjoyment and quality of life?

In the article, the author worries that “…by the advanced age of twenty there is a very good chance that our prefrontal cortex (the brains of the brain, responsible for problem-solving, decision-making, and complex thought) has already begun to shrink.” And thus begins the decline. But, wait, maybe not. I hadn’t heard this particular assertion before (the shrinkage thing), and in fact, from what I have read, my impression is that the prefrontal cortex continues to develop well into our twenties and perhaps even up to age 30 or more. And, from an evolutionary point of view, perhaps that is sufficient. After all, until quite recently (given the lifespan of our species), 30 years was about the life expectancy for human beings. It is only in the last few thousand years, with the advent of agriculture, that our life expectancy has grown, and in the last few hundred years that extension has accelerated. And, perhaps, living longer has given us the luxury of having a few brains around that might take even longer than 30 years to mature. Ahem. Such as autistic brains. This is mostly speculation on my part, of course, but consistent with what I know. As more studies are done, such as the one I am in now, we will learn more.

The balance of the article is quite entertaining and educational. The main conclusion that I take from it is that keeping one’s mind active is hugely important (not the first time we’ve heard this, to be sure), and that it is not sufficient to repeat the same brain exercises ad infinitum. The author makes the point that if one becomes, for example, very adept at doing crossword puzzles, that activity ceases to be stimulating. It instead becomes routine and almost automatic. The key is to take on new and different challenges with some regularity. I find this insight to be extraordinarily comforting, since all my life I have chided myself for being such a dilettante and dabbler. I guess my brain just craves stimulation and I was doing the right thing by it.

 

Jul 30

The Art of Staying Focused

In a recent (June 2013) short and informative interview published in The Atlantic, James Fallows (JF) asks Linda Stone (LS) to explain what she means by such phrases as “continuous partial attention” and “attention strategy.”

Many of us who are autistic have given much thought to the concepts outlined in the interview. For me, it rang a lot of bells, so when the word “autism” appeared I wasn’t surprised.

LS: …Kids learn empathy in part through eye contact and gaze. If kids are learning empathy through eye contact, and our eye contact is with devices, they will miss out on empathy.

JF: What you’re describing sounds like a society-wide autism.

LS: In my opinion, it’s more serious than autism. Many autistic kids are profoundly sensitive, and look away [from people] because full stimulation overwhelms them. What we’re doing now is modeling a primary relationship with screens, and a lack of eye contact with people. It ultimately can feed the development of a kind of sociopathy and psychopathy.

JF: I’m afraid to ask, but is this just going to get worse?

LS: I don’t think so

She shows an amazing (and unusual) understanding of how autistic kids (and adults, btw) have a different strategy for paying attention. For many of us, a glance suffices to give us all the information we need, and a full-bore gaze will provide too much information and create in us an inability to do other simultaneous tasks that also require our attention, like listening or speaking.

For more on this, see my post Gaze Aversion: An Autistic Adaptation.

Interestingly, this topic came up in an all-day seminar on autism that I attended last week at Brandeis University. One of the speakers was David Tesini, a professor of Pediatric Dentistry at Tuft University. He described some of the challenges of providing dental care to autistic children, and said that he felt it important to have direct contact and communication with the patient, and not to have conversations relayed through the parent or other care-giver. He said one of the ways he would know a kid was paying attention was if he could get the child to look at him. 

One of the members of the audience challenged Dr. Tesini on this, saying that her autistic son had explained to her that eye contact can be distracting. I later told him that his objective (having direct communication) was excellent and much desired by autistic people, but that there are probably other ways for him to measure the level of attention he is getting. He was very appreciative of the feedback we gave him, and promised to learn more and adjust his practice and teaching.

From understanding comes acceptance.

 

 

Jul 24

Slides from a Workshop on Neuroexceptional Couples

Eva Mendes and I led a workshop at AANE’s Annual Conference for Adults. The theme of the Conference was Advocacy, and the keynote address was a 2-hour tour de force by our beloved Ari Ne’eman of the Autistic Self Advocacy Network (ASAN).

Our workshop was focused on relationships. Any relationship (romantic or otherwise) is a challenging enterprise, but it is even more so if one or both of the partners is neuroexceptional (not neurotypical). The most common combination we encounter is a man who is Aspergerian and a woman who is neurotypical. But there are many other permutations. We have enjoyed having same-gender couples as well as partners who were both Asperger’s.

In keeping with the theme of the conference, we emphasized self-advocacy in a relationship. This requires self-awareness as well as sensitivity to the needs of one’s partner.

Here is a link to the slides I used. In the course of the workshop, we covered most (though certainly not all) of the topics listed here. The flow of the workshop, however, was not lecture-style, but was a rather free-form discussion about what was on people’s minds. Eva did a good job of drawing people out, and we shared some of our experiences of co-leading couples support groups. I talked about my perspective, as an autistic person who gained most of my insight into autism fairly late in life.

There was a lively discussion, with people asking questions and sharing their own experiences. There were even a couple of people in attendance who had been part of one (or more) or our couples support groups.

Please keep in mind that this is all copyrighted material, and is provided here for educational purposes only. Do not copy or reproduce the slides, but feel free to share the link, and to comment on them or ask questions about some of the more obscure ones. The cartoons were used to illustrate various themes that commonly come up in the support group settings, and I find that many people laugh because they see themselves (or their partners) in them.

 

Jul 17

Autism Acceptance: My Thoughts Captured in an Interview

Paula Durbin-Westby has been publishing a series of interviews with autistic people on the subject of Acceptance.

Mine is the latest one that she has posted on her Autism Acceptance Day blog.

Please take a look and tell me what you think. Also, poke around her site for many useful links and lots of good information.

The The Thinking Person’s Guide to Autism has also published a link to the interview on their Facebook page.

Sample:

What do you think about autism acceptance and awareness, other than your efforts with the Massachusetts Autism Commission?

Awareness has played a huge role in my own life in recent years. Life is much better for me now that I am aware that I am autistic. For me, too, awareness has led, slowly and painfully at first, later with much enthusiasm, to acceptance. I now embrace being autistic, and realize that my difference has been a source of much of the joy in my life, and not just some of the sorrow. I’m still a bit buffaloed by the Executive Function thing, and am working hard to improve my abilities there. 

In many areas of my life, awareness and acceptance have led to an inner peace that had always been elusive to me. I had always wondered why so many of the sensory experiences that bothered me didn’t seem to affect those around me. Now that I understand that these annoyances arise from the way my autistic brain processes things, I have learned to either shrug them off (acceptance) or to take steps to reduce the anxiety and stress they produce. I can, for example, avoid places with bright lights or excessive noise. I now feel different, instead of weird, or that there is something “wrong” with me.

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