It’s Time to Stop Pouring Research Money Down the Genetic Sinkhole

The Autistic Self Advocacy Network (ASAN) and others have protested the disproportionate amount of money that is spent on “basic” research (i.e. trying to understand the underlying neurobiology of autism) versus how much is spent on “pragmatic” research (learning how to make effective services available to improve the quality of life for autistic people). In 2010, according to the federal government, $408 million was spent in this country on autism research.

As just one example of the disproportionate spending, over $50 million was spent on identifying “Genetic Risk Factors,” whereas only $6 million was spent on researching “Lifespan Issues” (i.e. helping autistic adults).

Such lop-sided funding might be justified if genetic research held out great promise for helping autistic people, but there is no evidence to support that idea. Quite the opposite, in fact.

In a recent (February 15, 2013) post in Mad in America, Jay Joseph has written a synopsis of his ongoing critique of a scientific dead-end. Namely, the Quixotic search for the gene(s) that “cause(s)” any number of psychiatric conditions.

His lede is straightforward:

Two generations of molecular genetic researchers have attempted, yet failed, to discover the genes that they believe underlie the major psychiatric disorders.

Although autism is becoming more widely understood as a neural difference, not a “psychiatric disorder,” it is one of the profiles that is subject to this intense witch hunt. In his article, Joseph mentions autism in passing, as an example of one of the many areas where genetic research has been a failure.

Science writer John Horgan wrote about these non-replicated claims in 2004, and the point is even more relevant today with an additional nine years of gene finding failures behind us:

“Over the past 15 years or so, researchers have announced the discovery of ‘genes for’ attention-deficit disorder, obsessive-compulsive disorder, manic depression, schizophrenia, autism, dyslexia, alcoholism, heroin addiction, high IQ, male homosexuality, sadness, extroversion, introversion, novelty seeking, impulsivity, violent aggression, anxiety, anorexia, seasonal affective disorder, and pathological gambling. So far, not one of those claims has been confirmed.”

The state of the art, such as it is, in genetic research relative to autism seems to me to have found dozens, if not hundreds, of genes that are “associated” with autism. A recent article in The Lancet reports on results of an analysis done by the “Cross-Disorder Group of the Psychiatric Genomics Consortium.” to study genetic similarities among “autism spectrum disorder, attention deficit-hyperactivity disorder, bipolar disorder, major depressive disorder, and schizophrenia.”

Interpretation: Our findings show that specific [genetic markers] are associated with a range of psychiatric disorders of childhood onset or adult onset. In particular, variation in calcium-channel activity genes seems to have pleiotropic effects on psychopathology. These results provide evidence relevant to the goal of moving beyond descriptive syndromes in psychiatry, and towards a nosology informed by disease cause.

Without delving into the meaning of the technical terms here (subject for a future post), the take-away is that, in the view of this group of scientists, autism (as well as each of the other “disorders”) is a “disease” that has a genetic “cause.”

This, in my view, is not science, but advocacy. Science takes a bunch of observations (data) and formulates an hypothesis to explain them. Advocacy takes a conclusion and seeks to find data to justify it.

But the problem is larger than that. Science understands (if one can even be so generous as to use that word) a very tiny fraction of the human genome. Most research to date has focused on the 1% or so of DNA that codes for proteins (i.e. has the genetic instructions for making the proteins that constitute the human body). The other 99% remains pretty much a complete mystery, although progress is starting to be made in analyzing that. The ENCODE project (ENCyclopedia Of DNA Elements) is still very much in its infancy.

“Originally genetics was focused on the one percent,” said bioinformaticist Mark Gerstein of Yale University, referring to geneticists’ early concentration on genes that code for proteins, which represent just a a tiny fraction of the genome’s myriad parts. “We’re shining a light on the 99 percent.”

Jigsaw puzzle images have become associated with autism, for better or worse. I don’t know if autism is a puzzle so much as a mystery. When I think about the 99% of the human genome that we barely understand (other than that it has some functions that are essential to making us who we are), I get a mental image of reaching into a jigsaw puzzle box that has 1,000 pieces, pulling out, at random, 10 pieces, placing them on a table, and trying to figure out what the 1,000-piece picture looks like.

And, ultimately, even if we can figure all of this out, what purpose does this inquiry serve? One could also perhaps figure out the “cause” of left-handedness. But of what value is that? Shouldn’t we be more focused on observing that left-handed people have difficulty using some of the tools that were designed for a predominantly right-handed world, and provide left-handed scissors and can openers and such?

Or, maybe there is a “gene therapy” that could “cure” left-handedness so that we don’t have to go to all that trouble? Left-handedness, like autism, is a natural part of the human condition, and we should embrace the diversity that they represent.

I’m not left-handed, but I am autistic, and I’m proud of that and thankful for it. For most of my life, I didn’t know what that meant, but now that I do, my life is much better. I dream of a time when understanding and acceptance will make life easier for all autistic people. Genetic research may play some small part in that, but we have more important things to do right now.

 

Okay, I’m Superman

It pains me to write these comments, critical of one of my favorite neuroscience writers, but it must be done.

V.S. Ramachandran has just published an online article that has taken an enormous amount of flak on Twitter, some of that from me. Also, the very first comment to the article cites a study that seems to indicate his claims are questionable at best.

UPDATE 4/19: One of my tweeps told me that the link just given was a transcript of an old interview, so he had complained. Evidently, the editor took it down. I’m not sure why, since as far as I know, it still represents Ramachandran’s point of view. The text of the interview appears here, but seems also to have generated some controversy on that site, so it could be removed from there as well, I suppose.

UPDATE 12/9/14: I notice it was indeed taken down, so I’ve put a copy on my own site, of the original post I saw and also a plain text version (not edited, so it may be a bit confusing, but it has all the words).

His punchline is

So if you make a list of all the properties, emotional empathy, imitation, pretend play and you look at all those functions of mirror neurons and make a tabular column of the functions that are deficient in autism, there’s almost a perfect fit.  This is what led us to suggest over 10 years ago that mirror neuron dysfunction might be the basis of autism, it might be one of the major causes of autism.

Really? A “cause” of autism? Based on my own experience, I can see that, having an autistic brain, my mirror neuron functioning might be impaired much in the same way many other brain functions are hindered. Sensory overload. But “dysfunctional” — I don’t think so. And, I think he has his causality backwards.

He then modestly claims that his speculation that “mirror neuron dysfunction might be the basis of autism” is

better than any other theory that’s around regarding autism

Really? Really?

Perhaps he also has a theory regarding lefthandedness.

Based on his descriptions of autism, it seems to me he doesn’t understand what it is like to be autistic. In the article, he says that autistic people

are lacking in empathy, … unable to adopt somebody else’s point of view … [and there is] also a lack of pretend play

These things are all completely untrue, in my experience.

I wrote a post a month or so ago about empathy. There is also a huge catalog of writings on this topic. I don’t know a single autistic person who doesn’t experience empathy (aside, perhaps, from those who are also alexithymic). As I noted in my post, autistic people may have trouble expressing their empathy, and so give the appearance of not being empathic, but that is a communication issue, not one of empathy.

And then there’s the old “theory of mind deficit” myth — these things are pretty much of the same piece.

And lack of pretend play? Not for me, I can assure you! Growing up, I was the oldest of five siblings, and was often the oldest in a group of kids eager to play. They would look to me to decide what we would play that day — would it be Cowboys and Indians? (and who would be which?) or would it be building a fort? or digging a hole to China? I got to decide. And I didn’t need playmates, either. I had plenty of imaginary friends.

According to Ramachandran,

Pretend play by definition in normal children or non-autistic children requires that you put yourself in the shoes of that doll or that action figure.  Pretend you are Superman.  Suspend reality for a short while and pretend you are Superman.  This autistic children are incapable of doing…

Superman was my favorite comic book and TV show when I was young. I didn’t have to pretend to be Superman. I was Superman. I even had a Superman costume, including the cape. I could fly.

All of these myths about autism may have been believed ten years ago, when Ramachandran devised his theory. But, he should know better than anyone that science evolves rapidly, and there are fewer and fewer people who believe them to be so.

Part of the problem, I believe, is that what is in the common wisdom surrounding autism is based in some large measure on ancient studies that were done in the days when autism diagnoses were rare. Only children were diagnosed, and only those who exhibited very noticeable behavioral differences. Kids who couldn’t speak, or who were  aggressive or self-injurious. Many of these children also had intellectual impairment.

It was thought, not too many years ago, that 70% to 80% of autistic kids were also intellectually impaired. Over time, researchers came to realize that the number was probably the reverse of that, and even more recently it has become clear that there is no connection between autism and intellectual or functional capacity.

This, in my opinion, is why we have seen the “explosion” of autism diagnoses. We have been here all along, but there was little awareness that most autistic people had learned to “fit in” and adapt.

I have a lot more to say about all of these things, including mirror neurons, but I’ll leave it at that for now. I simply felt a need to protest the appearance of this antiquated speculation that seems not to be based on our current understanding of autism.

The Ramachandran article, by the way, appears to be a transcript of a video which appears on the same site.

Report of the Massachusetts Special Commission Relative to Autism

Michael and Dave at the State House

 

Yesterday, a formal ceremony in the Massachusetts State House made public a report by the Massachusetts Special Commission Relative to Autism, more commonly known as “The Autism Commission.”

The picture here was taken after the event by Dania Jekel, Executive Director of AANE, showing Dave Harmon and me outside the State House. Dave and I are Board members at AANE. Dave served as co-chair of the Adult Services subcommittee of the Commission. Dania and I, as well as AANE Board member Dan Rosenn, served as Commissioners.

Although the report was formally published yesterday, its recommendations had been made available earlier in the year, and two months ago AANE collaborated with the Disability Law Center, the Arc of Massachusetts, and others to file two bills designed to implement the top priorities of the Commission.

House Bill 78 (and identical Senate Bill 908) seeks to expand eligibility for services provided by the Massachusetts Department of Developmental Services to include more people with developmental disabilities.

Senate Bill 909 (and identical House Bill 1794) would require the Department of Mental Health to provide services to people with an autism diagnosis, if needed.

An Executive Summary of the report lists all the top priority recommendations on its last page.

The full report is 174 pages long.

An abbreviated version contains 62 pages.

All of this information is provided by me in my personal capacity, and is not meant to imply an endorsement by the Commission, AANE, or any other organization. I am interested in promoting dialog about the issues raised in this report, and would welcome comments here on my blog.

 

Successful Launch of “Successful Transitions”

Last night, I attended the public unveiling of a project I’ve been following with great interest for quite some time now.

cropped-successfultransitionsbizcard1My friends Cheryl and Alex Chan told the story of their years-long journey in finding a path to adulthood for their now-20-year-old Son, Nick. This testament to their love, perseverance, and creativity was an astounding presentation to watch. Supported by a large cast of collaborators, they told of their struggle to find the right solution, one that would work for both of their children; of the obstacles they faced, of the choices they made, of the friends and professionals who encouraged and supported them at every turn.

There were, of course, setbacks along the way, and second-guesses about whether they had made the right choices. In the end, though, they have created a home for Nick and an environment in which he can thrive, learn new skills, work in the community, and develop the friendships he cherishes.

It is an extraordinary story, and, as Cheryl announced, they want to share it with the world so that “the extraordinary can become the ordinary.”

I learned a lot from listening to the panel discussion of how Nick was able to move from an institutional setting (“a residential placement” is the euphemism) to a shared living arrangement, skipping over the intermediate step that many such people take; the group home. Shared living has been around for a long time, and takes many forms. Institutions have been on the way out for a long time, too, and closing the last one can’t come too soon. Group homes have become the mode of choice for the vast majority of people who can’t live fully independently. While these arrangements may be best for some people, it’s clear that shared living offers a better environment for a lot of people. The model keeps evolving.

You’ll be hearing a lot more about this new organization, created by the Chans. I urge you to take a look at their blog and to follow their progress. It’s a conversation we need to engage in for a long time to come.

When Will I Learn (to take myself seriously)?

After all these years of observing how oddly (by other people’s standards) my body reacts to things, and even after several years of understanding that a lot of that has to do with being autistic, I still hesitate to assert myself.

Case in point: I went in to my local clinic the other day to get a pneumonia shot from the nurse. The result was needlessly painful.

My doctor, at my last physical exam, had recommended three different shots: one for flu, one for whooping cough, and one for pneumonia. I have never had a flu shot, and I’m a bit anti-medication, but I acknowledged that all of these were a good idea. To my credit (knowing that I can have “strange” reactions), I told her that I’d like to have them done on different days, not all at once.

Over the past few weeks, I had gotten the first two, and this past week came the appointment to get the third. In the event, the nurse asked me if I cared which arm she used. I said no, that I’m right-handed, but I didn’t really care. Wrong! I should have told her to use my left arm. She asserted that “this shot, unlike some others, doesn’t leave any soreness.” Right. And I’m not autistic.

Two days later, my arm was so sore I could not raise my hand above waist level. Sore is an understatement. I was in intense pain. I felt like I had been on the losing end of a barroom brawl. Fortunately, I did not plan to go skiing or do any other activities that required any great arm strength. Picking up hay to feed the horses was the most challenging activity I undertook (and that wasn’t easy).

As the pain lessened, I decided it was okay for me to go skiing, and I’m glad I did. In almost-blinding sunshine, I floated down all the black-diamond trails that Jiminy Peak has to offer (some of them more than once). As I pointed my skis down the hill and let gravity do its thing, I kept in touch with the mountain by yelling at myself (mentally) to “use the entire ski” — if I get lazy, I have a tendency to lean back, instead of aggressively putting my weight on the full length of the ski.

Addiction is a powerful thing. My skiing pleasure center (there is such a thing, right?) was enjoying the sensation of flying that my rapid descent created. There were very few other skiers on the black trails, so I didn’t have to dodge bodies very much. As I passed other skiers, I took a small amount of pleasure in noting that I was not being passed by too many. Then, in one of my last runs (on Jericho, the only double-diamond run on the mountain), I took special pleasure in thinking that I was probably skiing it as fast as I ever had. I had left the top at about the same time as another skier — a guy in a red jacket. As I got to the halfway point in my descent (not pausing for a moment, focusing on every turn) I looked up to see where he was. He was already at the bottom. Wow! Not sure if I want to ever go that fast. But…

On the next run, my pleasure center was crying for more. My legs, on the other hand, were crying for relief. I had to call on my prefrontal cortex to intercede. The pleasure center was overruled, and I made that my last run. What a glorious day of Spring skiing!

 

 

Gaze Aversion: An Autistic Adaptation

Here is a wonderful new post that states what for me has long been glaringly obvious.

Encouraging Eye Contact May Disturb Autistic Kids’ Thinking

Terrific! A concise statement of what I have been thinking for quite some time now. Mother Nature doesn’t make mistakes. There is a reason for our behaviors. True, we can change them if we so choose, and, believe me, I have made many adjustments in mine. Gaze aversion is such a powerful instinct, however, that it obviously (to me) serves a deep function. As Stephen Mark Shore has put it, “I can either talk to you or I can look you in the eye. Which would you like me to do?”

“When trying to retrieve information from memory, or solve a complex problem, looking at someone’s face can interfere with the way the brain processes information relative to the task. This is, in part, because faces are such rich sources of information that capture our attention…”

Autistics capture and process way more information than neurotypicals, in my experience. So we don’t need a constant gaze. An occasional glance at a face gives us more information than we need about the emotional state of the person we’re with. Asking us to look into that face while trying to do other processing is like asking us to take a written test in a room where a live rock band is playing and light are flashing. It’s just impossibly distracting.

And, I might add, this isn’t just about kids. Many of us, as we gain wisdom and experience that come with aging, have adjusted our behavior in this realm, to use more eye contact in settings where that does not threaten to compromise our ability to process information. But, at least for me, gaze aversion comes on strongly if I am formulating a complex thought or engaging in any considerable amount of deep thinking. It’s not something I can (or want to) change.

 

 

Empathy as a Form of Communication

Receptive and Expressive Language

All communication has two aspects: receptive language and expressive language. Receptive language is what we hear and understand. Expressive language is what we say to others.

I believe that empathy is also a form of communication; one that is as essential to each of us as is spoken, written, or signed language in understanding the feelings of other sentient beings and in conveying our reaction to them. To oversimplify, one might think of language as the cognitive component of communication, whereas empathy is the emotional component. Of course, in reality, they overlap and complement each other.  

Receptive empathy is the ability to perceive the feelings that others are experiencing. Expressive empathy is the ability to convey that understanding to others.

Definition of Empathy

“Empathy” is a complicated word — it means so many different things to different people. And, a discussion of whether autistic people have a capacity for empathy that is different from most other people further complicates the conversation.

A web search on the single word “empathy” produced for me these top 5 results, defining the word in 5 different ways:

  1. Empathy is the capacity to recognize emotions that are being experienced by another sentient or fictional being. (wikipedia)
  2. the imaginative projection of a subjective state into an object so that the object appears to be infused with it (Mirriam-Webster)
  3. the intellectual identification with or vicarious experiencing of the feelings, thoughts, or attitudes of another (dictionary.com)
  4. Empathy is the experience of understanding another person’s condition from their perspective. (Psychology Today)
  5. Identification with and understanding of another’s situation, feelings, and motives. See Synonyms at pity. (thefreedictionary.com)

So, which is it? “recognize emotions” or “imaginative projection” or “intellectual identification” or “vicarious experience of understanding perspective” or “identification and understanding” or “pity”?

It is probably all of those things and more, including sympathy and compassion. Trying to understand what people intend to convey by using the word is a bit like Justice Potter’s infamous definition of pornography. Empathy is something you know when you experience it, even though it is hard to describe in words.

Are there “Types” of Empathy?

Modifying the word “empathy” with “cognitive” and “affective” represents an ill-advised attempt to deconstruct empathy, in my view . Much has been made of the idea that these two aspects of empathy (to the extent that this dichotomy has any validity at all, which I doubt) arise from different parts of the brain, and that one or the other is deficient in certain personality types. This kind of hair-splitting is a distraction, it seems to me, when it comes to understanding the role and functioning of empathy.

I’m sure there is a wide range of empathic capacity, both in terms of experiencing empathy (whatever it is) and in expressing it. Those with alexithymia may have empathic capacity but may not recognize what they are experiencing or be able to express it. And all of my discussion here so far has nothing directly to do with autism. Empathy is a universal human trait. And beyond. Clearly, many other animals have empathic capacity as well.

Empathy arises from, or at least is related to, mirror neurons. In the famous incident of the discovery of mirror neurons, a monkey watched an object being picked up, and his brain region for picking things up fired as if he were doing it himself. So, he experienced what it was like to pick up an apple (or whatever it was), but not from the perspective of the other monkey (he’s not inside that brain) but from the perspective of how he would feel if he were doing what he was observing.

And What Does All of This Have To Do With Autism?

Now comes the tricky part with respect to autism. It’s twofold. The descriptions that follow are experiential (my own experiences and those of other autistic people I’ve spoken with), and represent my own speculations. What I report here may or may not be generalizable to other autistic people. See the link in the previous paragraph for a discussion of some of the controversy surrounding the linkage (if any) between autism and mirror neurons.

Autism and Receptive Empathy

It may be (1) that the mirror neuron system in the autistic brain is impaired because of the usual sensory overload that is always going on. It’s not that the mirror neurons are defective, it’s just that their functioning is clouded by the brain having so much else to deal with at the same time. Distractions, if you will. So the autistic person will not have the receptive clarity that matches the neurotypical — what is being called by some “cognitive empathy.” The emotional state of another being is recorded, but not processed with the same clarity because of the other demands on attention. The TMS experiments I participated in at Beth Israel demonstrated this. The experiment involved suppressing activity in a small area in the right hemisphere of my brain. Neuroscientists know that, through a process called neuroplasticity, when one area of the brain is compromised, another area will attempt to take over the lost functionality. That often involves the equivalent region in the opposite hemisphere of the brain.

Broca’s area is heavily involved in language and (therefore) social cognition,and much more. It is a complex and important region of the brain that is somewhat imprecisely located in the part of the brain known as Brodmann’s areas 44 and 45. I say “it” although, in my understanding (I have no formal training in neuroscience), there are two equivalent areas, one in each hemisphere, and the lion’s share of language processing occurs in the dominant hemisphere (the left one for right-handed people like me). Broca’s area, besides its central role in language comprehension and creation, also seems to serve as a bridge between the prefrontal cortex (cognition), and regions that control motor and somatosensory (tactile and other sensory) systems of the body. It is also thought to be rich in mirror neurons.

For all of these reasons, the scientists in the TMS Lab hypothesized that by temporarily and artificially suppressing the right side of my brain in the area just described, the left hemisphere would be more strongly activated than usual, thereby improving language and social (empathic) cognition. How right (so to speak) they were! I experienced (both subjectively and in their computerized measurements) sharpened ability to interpret emotional content more accurately. The difference in clarity was astounding to me and to others I spoke with who were subjects in the experiment.

Caitlin, for example, was shocked to find that she could see emotional content in written sentences and in video clips which, with the benefit of hindsight, she had not been able to see before. My clarity was more intellectual. I was able to solve (computerized) tasks faster than the computer could feed them to me, whereas before I had struggled and was unsure of the answers. Subjectively, it was like night and day, although I’m sure that the difference in my performance was measured in milliseconds. The difference in what Caitlin and I experienced (and John had a musical revelation, among many other experiences) was probably a function of where we started. I was relatively better (compared with her) at emotional reception. She, for example, had once been floored to find out that her brother knew more (much more) about the personal life of her receptionist than she did, although he lived in a distant city. It was just that when he called to speak with Caitlin, he would chat with the person who answered the phone about vacation plans and the like. It never occurred to Caitlin to make that kind of emotional connection.

The Irrelevancy of “Cognitive” Versus “Affective” Empathy

Which brings me around to the other bit (2) about autism and empathy. Take the Psychology Today definition: “Empathy is the experience of understanding another person’s condition from their perspective.” Please. Think of the monkey. Picking up a banana is probably a pretty universal monkey experience, so it’s easy to imagine that the mirror neurons of monkeys allow them to experience watching another monkey and essentially experience (vicariously) a nearly identical experience. Now, take an autistic brain. Not mine, please. I need it. If I watch a neurotypical pick up a banana, I am likely to be less clear about how that feels to them because they experience the world in a way that is very different from mine. I’m being metaphorical here, in case you didn’t pick up on that (so to speak). A physical action is one thing, but a more complex emotional reaction is quite a different level of experience. How can I empathize what you are going through if your way of experiencing the world is vastly different from mine? This works both ways, of course. How can a neurotypical person empathize with me if they have no clue what my brain is experiencing? So, it’s not a lack of empathy, or a lack of empathic capacity, it’s a knowledge or experiential gap. I can tell when my horse is happy to see me, or when he is in a playful mood, or frightened; these are fairly universal emotions. But my empathy doesn’t go too deep because I don’t really know what it’s like to be a horse. Or, maybe at some fundamental level, I do. I don’t always grok why he’s upset, but I know when he is.

Now, all of that is about receptive empathy; taking in and appreciating the emotional state of another being. This may be what is meant by “cognitive” empathy. But I also think receptive empathy includes components (or maybe all) of what has been termed “affective empathy” or “pity” or “compassion” — not just understanding, but sharing the emotional state of another. I believe this must naturally flow via the mirror neuron system that enables us to take in the feelings of another. If one is truly understanding what another is experiencing, it naturally follows that one is experiencing their emotions, too. From an evolutionary point of view, the value of being able to understand how someone else is feeling is being able to predict their behavior. If someone picks up a banana and smiles, that’s pretty non-threatening, but if someone picks up a rock and scowls, it might be better to take protective action. To truly take in another’s emotions, in the process I’m calling receptive empathy, one must also experience an approximation of those emotions. Although I’m aware these emotions are yours, and not mine, I experience my version of your anger, your pain, and your joy. It can’t be any other way.

And yes, there are people who have difficulty comprehending what they are experiencing emotionally, and conveying it, too. But, as alluded to earlier, that is a condition called alexithymia, not autism. Although studies about this are scant, I’m not aware of any definitive study that shows that alexithymia is more prevalent in the neuroexceptional population than it is in the neurotypical one. In my work with neuroexceptional couples (in a support group setting), I observe a fairly high proportion of alexithymia among the partners who are not neurotypical, but my sample is a highly self-selected subgroup of all neuroexceptional people, and I don’t have a control group to compare with.

For me, when I experience high receptive empathy (which includes sympathy, compassion or pity), such an experience is likely to lead to an emotional state of shock that requires me to tone down my feelings, because the nerves are too raw and exposed. So, I withdraw, I put up barriers to keep the world out, to keep things from getting worse. I can only take so much. Most autistic people with whom I have talked about this agree. We have too much empathic capacity. It is paralyzing. Why is that? I’m not sure. Excess myelination? I’ll get back to you on that.

Autism and Expressive Empathy: The Challenge for Autistic People

The biggest complaint in my couples support groups is that the (typically) Asperger’s partner does not express empathy. I explain the bit that I’ve just gone through, that those of us who are autistic experience a high degree of understanding (what I have called here receptive empathy), and that our flat affect or silence does not mean we lack comprehension or sympathy. It’s just that dealing with these raw emotions is too frightening.Thus, we exhibit a lack of what I have come to call expressive empathy.

To partners who are feeling emotionally isolated, and are in need of validation, it’s not comforting to hear this. To them, there is no empathy if it isn’t expressed. And they have a good point. We autistics often stop one step short of what empathy is all about; connecting with another human being, to validate and comfort them. Without that piece, it does not serve its purpose. The result is, from the outside observers point of view, a “lack” of empathy. No reaction. Or an “inappropriate” (oh, how I hate that word) reaction. In fact, the reaction is an internal volcano that is about to erupt. Sometimes it does, and that is one form of meltdown. Sometimes it is contained, and the world is shut out.

I remember a time in my second marriage when things were not going well, and I was talking with my shrink about it. At one point, he said to me (in frustration), “Can’t you just tell her you love her? That’s what she wants to hear!” And, I realized (for complex reasons) that, no, I was not capable of that at that time. It seemed like lying to me. Yet, it would have been a harmless lie that could have made all the difference to her. I was empathizing with her distress, but I was not able to communicate that to her in a way that would have been helpful.

The terms I have used here, receptive and expressive, are often used to describe forms of language communication, which is where I started this post. And that’s really what empathy is, in its fullest expression; communicating emotional states. Autistics are really good at receptive empathy, but some of us fall short when it comes to using expressive empathy.

This is a failure of execution, not of cognition. Our brains work just fine, thank you. We just need to learn how to let other people know that. The good news is called neuroplasticity, and there is a way to use that, in neurally-inspired therapies and techniques that can change our patterns of behavior. Stay tuned. Much more to come on those subjects.

Meanwhile, I will be practicing my expressive empathy.

We’re Taking Over the World! Autism Now 2%, up from 1.2%

Good news! Those of us who are autistic are finally starting to get more recognition as to the important part of the population that we are. This follows closely on recent revelations in the Lancet that there is a close relationship between autism, bipolar, major depression, and schizophrenia. Just as autism is now understood to be a normal part of the variability of the human condition, it is my hope that the same kind of sympathetic view of these other conditions will soon follow.

Another interesting finding in the reports referenced below is that autism seems to be associated with living longer. Older parents are able to pass along this trait via autistic offspring. This is consistent with the idea that autism represents a slower development path for the human brain, and it makes sense that that would be associated with greater longevity. Friends of mine at Harvard Medical School who are researching a possible link (or lack thereof) between autism and Alzheimer’s have as yet not been able to identify a single autistic person who has ever been known to have contracted Alzheimer’s. Of course, since there aren’t many older adults who had been diagnosed with autism, the sample so far is too small to have scientific significance; nevertheless, it is a hopeful sign.

CDC and HRSA issue report on changes in prevalence of parent-reported Autism Spectrum Disorder in school-aged children

Who

CDC’s National Center for Health Statistics and the Health Resources and Services Administration

What

“Changes in Prevalence of Parent-Reported Autism Spectrum Disorder in School-Aged Children: 2007 to 2011-2012.”

The report was co-authored by HRSA and data collection was conducted by the CDC.  The data come from the National Survey of Children’s Health, a nationally representative phone survey of households with children. This survey is conducted every four years.

Main findings of the report:

  • The prevalence of parent-reported ASD among children aged 6-17 years was 2 percent in 2011-2012 compared to 1.2 percent in 2007.
  • The change in prevalence estimates was greatest for boys and for adolescents aged 14 to 17 years.
  • Children who were first diagnosed in or after 2008 were more likely to have milder ASD than those diagnosed in or before 2007.
  • Much of the increase in the prevalence estimates from 2007 to 2011-2012 for school-aged children was the result of diagnoses of children with previously unrecognized ASD.

Governor Deval Patrick unveils online tool to show impact of his budget proposal on an individual or family

Approximately half of Massachusetts residents will pay less, or the same under Governor Patrick’s proposal to grow jobs and opportunity

BOSTON – Monday, March 4, 2013– Governor Deval Patrick today unveiled an online tool that shows the impact of the Patrick-Murray Administration Fiscal Year 2014 (FY14) budget proposal on an individual or family’s budget. The tool can be found, along with maps that outline the education and transportation plans that will help grow jobs in every corner of the Commonwealth, at www.mass.gov/governor/choosegrowth.

“We are proposing meaningful investments in education and transportation, and people want to know what that means for them,” said Governor Patrick. “Last week, with the maps, we showed what long-postponed projects would get done in each community. Now, with this tool, we show just what the costs or savings will be for individual households.”

Residents will enter information including their annual income and filing status, and will be able to view the impact of the Governor’s proposal on their personal taxes.

“The Governor and I know that asking people to pay more by any type of tax increase is never easy,” said Lieutenant Governor Timothy Murray. “However, our growth strategy will expand opportunities for this generation and generations to come. As we continue the conversation, we hope this online tool will help residents understand the impact taxes will have on them personally and for the strength of our economy and Commonwealth.”

To support almost $2 billion in meaningful investments that will strengthen the state’s economic future, the FY14 budget calls for the creation of a simpler and fairer tax system that lowers the sales tax from 6.25 percent to 4.5 percent, and raises the income tax to 6.25 percent. All proceeds from the sales tax will be dedicated to a public works fund that will support the Administration’s 21st century transportation plan, as well as the school building fund and other public infrastructure projects, and will be off limits for any other purpose.

To make that increase fair to all according to their ability to pay, the Governor has proposed doubling the personal exemptions for every taxpayer and eliminating a number of itemized deductions.  Making those changes gives the Commonwealth a tax code that is simpler and fairer. The changes to state sales, income and business taxes will make Massachusetts comparable on taxation to our neighboring states and those with which we compete.

Last week, Governor Patrick unveiled an online map tool that outlines transportation projects in every community that would be funded under the Governor’s FY14 budget proposal, as well as the additional Chapter 70 education funding and support for public colleges and universities communities can expect to receive under the Governor’s investment plan. The maps also show how many children in each community are on the waitlist for early education and care programs. As part of the Governor’s investment plan, the 30,000 child waitlist for early education and care programs across the state would be eliminated.

Following the announcement of his investment plan in his January State of the Commonwealth address, Governor Patrick has been traveling across the state making the case for business leaders, educators, local elected officials and members of the public about the importance of investing now in education and infrastructure to spur job creation and unlock opportunity in every corner of the Commonwealth. For more information on the Governor’s investment plan visit www.mass.gov/governor/choosegrowth.

What Does It Mean To Be WEIRD? Can Penguins Fly?

WEIRD = “Western, Educated, Industrialized, Rich, and Democratic”

Why is that also “weird” in the sense of being unusual? Because it is. WEIRD people like me represent only a small fraction of the world’s population, yet our “science” often assumes that what is true of our culture is universally true.

Researchers had been doing the equivalent of studying penguins while believing that they were learning insights applicable to all birds.

Are Penguins Weird?

This article* provides an interesting perspective on the influence of culture on psychological research. The assumption that culture does not affect some basic behaviors may be seriously flawed; thus many conclusions about “human nature” may in fact be only statements about behavior in the European/American part of the world.

Economists and psychologists, for their part, did an end run around the issue [of cultural imperialism] with the convenient assumption that their job was to study the human mind stripped of culture. The human brain is genetically comparable around the globe, it was agreed, so human hardwiring for much behavior, perception, and cognition should be similarly universal. No need, in that case, to look beyond the convenient population of undergraduates for test subjects. A 2008 survey of the top six psychology journals dramatically shows how common that assumption was: more than 96 percent of the subjects tested in psychological studies from 2003 to 2007 were Westerners—with nearly 70 percent from the United States alone. Put another way: 96 percent of human subjects in these studies came from countries that represent only 12 percent of the world’s population.

* We Aren’t the World

Joe Henrich and his colleagues are shaking the foundations of psychology and economics—and hoping to change the way social scientists think about human behavior and culture.

It’s a good article, well-written and replete with links and illustrations. Highly recommended. It’s time we started to think outside the WEIRD.