Jul 09

Massachusetts takes a huge step forward in the realm of disability rights

Yesterday, the Massachusetts General Court took a huge step forward in the realm of disability rights. The Senate approved S2245, Relative to assisting individuals with autism and other intellectual or developmental disabilities.

The bill isn’t perfect, but it is an enormous achievement on the part of the advocacy community. I like to say that advocacy is about asking for the moon and the stars, and if all you get is the moon, well, that isn’t so bad, is it?

Everyone who had a part in this accomplishment can be proud, and we can all congratulate each other.

The highlights of this bill (yet to be reconciled with the House version and signed by the Governor) include

  • makes the Special Commission Relative to Autism a permanent oversight body
  • creates special savings and expense accounts to receive tax benefits for expenditures that benefit an individual with a disability (of any kind)
  • expands the mission of DDS to include adults with developmental disabilities
  • encourages cooperation between DDS and DMH to provide mental health services to those with developmental disabilities
  • creates an endorsement in autism to certify teachers who are qualified to assist autistic students
  • extends insurance coverage for autism services to MassHealth (Medicaid)
  • requires the Autism Commission to report on employment and housing opportunities for autistic people in the Commonwealth

The annual cost of all of this is expected to be in the range of $30-$60 million, which will ultimately be offset by long-term savings as people are able to live more independently.

As I think back to the many struggles along the way, I give thanks to my own stubbornness and determination, and to the same qualities in many of my allies. We refused to take “no” for an answer at many crucial points, and we were never discouraged by those who told us we were only dreaming.

I had to argue, for example, with the staff of the Disability Law Center to get their assistance in writing some of this legislation. I was told it had very little chance of passing, so was not a good use of their time. I convinced them otherwise. Once the bill was filed and we started shopping it around, we were told by any number of lawmakers that major pieces of legislation like this do not get passed when they are first brought up. We even faced some early resistance within the Administration from folks who thought it was “too much too soon” but who did come around and ended up giving our proposals enthusiastic support.

So, there is much more to be done, but this is *huge*!

Michael Wilcox
AANE Advocacy Committee
Special Commission Relative to Autism

Jun 24

Disability Forum at Perkins School on Thursday June 26

Please join us for a
Gubernatorial Candidates Forum on Disability Issues

All seven candidates for Governor of Massachusetts will appear at this forum, and each will have half an hour to make their case and answer questions.

Don Berwick will be speaking second, at 1:30. Here is a flyer we will pass out at the event, enumerating the candidate’s stance on many disability issues.

If you’d like to help pass out flyers and sign people up for the campaign, please contact me.

For more information on the forum, including livestreaming, see this link.

Jun 15

Where Have All the Flowers Gone?

On this Fathers Day, I think back on my own father. Dad to me, Gray to his family, The Gray Fox to many. He would be 98 years old today if he had lived beyond his 81st birthday. I still miss him.

He was a lifelong Socialist and Pacifist, and (I now know) an Aspergerian. I have all of that DNA.

I feel that I have found a new father figure in Don Berwick, even though we are the same age. I grew up in the 1950s and 1960s, a time of prosperity and social awareness. Flower Power, feminism, and the Civil Rights movement. I was active in the anti-Vietnam War movement and I was a Conscientious Objector (and have the draft card to prove it).

Somehow, all of that went away. Many candidates have won my heart over the past few years because they have offered a vision that reflects the hopes I had for this world so many years ago. Nine years ago Deval Patrick came upon the scene and won my allegiance. But there have been others. Bob Reich. Howard Dean. Many more local candidates (and office-holders).

Yesterday, Don Berwick delivered a thrilling Convention Speech. I stood only 20 yards away from the podium and watched the sincerity in his face. There were times when I couldn’t applaud because I was overcome with emotion. I have heard the story of Isiah more than once before, but that didn’t stop the tears.

“He had two diseases,” Berwick said. “One was leukemia, which we cured. The other, he died from. Its name is injustice, it is inequality, it is poverty and, yes, it is racism.”

Don’s agenda to end these things is enough to enlist me in his campaign. But there is much more. I will be working hard for Don between now and November.

Mar 10

Why Autism “Functioning” Labels Are Misleading

Unfortunately, there is a great deal of confusion, and therefore misunderstanding, around what is meant by “high-functioning” and “low-functioning” autism.

The commonsense use of the word “functioning” has to do with, well, functioning. Most people would probably associate “functioning” with the usual meaning of “to work or operate, to carry on a function.”

But in the academic/scientific autism world, there is only a loose connection between the vernacular sense of the word and the label.

And my impression is that the clinical world is somewhere between these two, adding yet more confusion. A few years ago, for example, there was a raging debate about whether there is a difference between “high-functioning autism” and “Asperger syndrome.” The only pragmatic difference I could detect in who got which label was whether there was a delay in the acquisition of spoken language (“high-functioning”) or no delay (“Asperger’s”).

In the psychology community, the phrase used to describe the commonsense meaning of “functioning” is “adaptive behavior.” There is a related term, “functional behavior,” but that seems to be more about understanding the purpose (or function) of maladaptive behaviors.

Adaptive behavior reflects an individual’s social and practical competence of daily skills to meet the demands of everyday living. Behaviors change throughout development, across life settings and cultures, and through social constructs and expectations of others. It is important to assess adaptive behavior in addition to IQ in order to determine how well an individual functions in daily life.

Part of the problem here is that autism and true adaptive behavior skills have very little to do with each other. Celine Saulnier of Emory University spoke at a conference I attended a couple of years ago and emphatically stated that “functioning means IQ, and that’s all it means!” when describing autism.

She pointed out that not many years ago, it was thought that autism and intellectual impairment where highly correlated, with perhaps 70% to 80% of autistic people being cognitively impaired (generally defined as having an IQ not above 70). Today, the common wisdom seems to be the other way around, but Dr. Saulnier’s work (citations at her PubMed page) and that of others has shown that there is effectively no correlation between IQ and measures of autism such as the ADOS scale.

The mention of this diagnostic scale risks opening another can of worms, that of “severity” in autism. That is best left for another post, so let me just mention in passing that my interpretation of the ADOS (and other such scales) is that they measure how easy or difficult it is to tell from behavioral observation whether someone is autistic. A person who exhibits more obvious autistic behaviors is not necessarily “more” autistic than someone who has fewer outward signs.

There is another concept relating to the definition of adaptive behavior given earlier, and many commercial products exist that quantify this functional adaptive behavior. The best-known of these is perhaps the Vineland Scale, but there are several others that are in use. Dr. Saulnier observed that there is also no correlation between ADOS scores and Vineland scores, meaning that the “degree” of autism that is observed in a person says nothing about that person’s ability to function in life.

What, then, does it mean to label someone as a “low-functioning” autistic? Simply put, it is an autistic person who is cognitively impaired. This, as mentioned, is generally defined as having an IQ of no more than 70. There is more than one IQ scale, and different ways of standardizing test scores, but overlooking that wrinkle, the reason 70 was chosen is that it is two standard deviations below the mean IQ of 100. In keeping with the findings of Professor Saulnier and others, suggesting that the prevalence of cognitive impairment is the same in the autistic population as it is in the general population, or 2.28%. It follows that nearly 98% of autistic people are “high-functioning.”

As an aside, the federal statute known as the DD Act contains a definition of developmental disability (both cognitive impairment and autism are considered to be developmental disabilities). There is no IQ test in that definition; it is all about a disability that

results in substantial functional limitations in 3 or more … areas of major life activity

Given the significant limitations that IQ tests have in predicting success in such “areas of major life activity” I asked around to see if the general understanding of “low-functioning autism” really did include that arbitrary cutoff. Yes, I was told over and over again from researchers I know and respect. Even if not stated, it was understood that 70 was the cutoff, although some studies explicitly used other breakpoints, such as 80.

One of my contacts, at Harvard, gave me a link to a Simons Foundation article that addressed this problem directly.

Most studies define high-functioning children as those with an IQ above 70 or 80, but this is problematic for a number of reasons, say some scientists.

Although this article has a different take on what percentage of autistic people are cognitively impaired, it does confirm what my informal contacts had been telling me.

In addition, it points out many problems with associating IQ-type intelligence with the ability to cope with real-life challenges.

“Crudely taking IQ as a metric to divide up individuals can be misleading, because high-functioning sounds like you are doing really well, when in fact you’re not,” says cognitive psychologist Tony Charman, [former] professor of autism education at the University of London.

and

A person who scores 125 on an IQ test — and thus considered high-functioning — may in fact be considerably impaired in daily activities.

and, confirming the point made earlier

A population study … looked at the association between autism traits and intelligence [which] were both stable over time, but there was only a modest association between the two, suggesting that autism traits are independent of intellectual functioning.

From the blog of an autistic researcher comes this assessment:

What does level of functioning mean in autism research?

In autism research, autistics’ level of functioning is most often judged according to scores on specific tests of IQ (e.g., Wechsler) or developmental level (Mullen, Bayley, sometimes the Vineland) at a specific time.

The reported threshold dividing “high” from “low” functioning ranges from 50 to 90–at least in papers I’ve read so far; the actual range might be even greater. Those are IQ or IQ-type scores with a mean of 100 and a standard deviation of 15. So the threshold, the line dividing “high” from “low” functioning in autism research, is almost three SDs wide. Fall into that impressive span, and you may be high or you may be low functioning, depending on who you ask.

If 90 is the threshold, then about 25% of the entire population (autistic, nonautistic, everyone) is low-functioning. If the more common threshold of 85 is chosen, then about 16% of everyone is low-functioning.

70 is the threshold often considered to be standard even if in reality, if you read the literature, the threshold varies dramatically. But there are different tests and within commonly-used tests there are different ways to set a threshold, even when the threshold is numerically set at 70.

Using the cutoff of 80 suggested in the Simons article, by the way, would mean that about 9% of autistic people are “low-functioning.”

My take on all of this is that the autism “functioning” labels so freely bandied about are misleading, inconsistent, and not really all that useful. I think we would be wise to simply drop the concept and stop using this terminology.

Mar 09

Cart Before the Horse Research: Multisensory Integration in Autism

A short article appeared on the ScienceDaily website a few weeks back, reporting on a piece of research published in The Journal of Neuroscience, January 15, 2014. The title of the research study was not given, but a link brings one to “Multisensory Temporal Integration in Autism Spectrum Disorders.”

The brief summary of the research is problematic for me from beginning to end, because it is an (altogether too common) example of research that starts with a false premise and then proceeds to offer advice to “treat” a problem that may not exist in the first place.

The major false premise, common to much autism research, is that autism is a “disorder” rather than a difference. When a researcher starts from that premise, they will be looking for “causes” of the “defect” rather than for an understanding of the source, function, and consequences of the difference.

In the study, Vanderbilt researchers compared 32 typically developing children ages 6-18 years old with 32 high-functioning children with autism, matching the groups in virtually every possible way including IQ.

This highlights a potentially major problem in research about autistic children (and very little has been done using adults, so research on children accounts for the preponderance of “findings” about autism). Autism is generally acknowledged to be a developmental difference, with some skills developing more rapidly and some more slowly compared with neurotypical (NT) children. So, age-matching is going to distort the results. There might be a very marked difference in ability in childhood, but that difference might disappear by the time people reach adulthood. This needs to be accounted for, in my opinion, but it seldom (if ever) is, in the research I have read.

“Children with autism have difficulty processing simultaneous input from audio and visual channels. That is, they have trouble integrating simultaneous information from their eyes and their ears,” said co-author Stephen Camarata, Ph.D., professor of Hearing and Speech Sciences. “It is like they are watching a foreign movie that was badly dubbed, the auditory and visual signals do not match in their brains.”

Okay, so we “have difficulty” and “the auditory and visual signals do not match in [our] brains” — that does not mean we can’t integrate the two, it’s just slower. This is consistent with the Intense World Theory of Autism.

“One of the classic pictures of children with autism is they have their hands over their ears,” Wallace said. “We believe that one reason for this may be that they are trying to compensate for their changes in sensory function by simply looking at one sense at a time. This may be a strategy to minimize the confusion between the senses.”

Hmmh — “We believe…” and “This may be…” — I wonder if it ever occurred to him to ask any autistic people to comment on that. This is a common arrogance, that NT scientists somehow mysteriously know more about what it’s like to be autistic than do autistic people. Bizarre.

Wallace noted that the recently-released Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, (DSM-5), which serves as a universal authority for psychiatric diagnosis, now acknowledges sensory processing as a core deficit in autism.

Perhaps needless to say, I don’t believe that autism belongs in the DSM, any more than homosexuality did. It’s a difference, not a “psychiatric diagnosis.” And I think Wallace has distorted the role of sensory processing in autism. It’s not a “deficit” but one of the differences that presents many challenges in a world that was designed by and for NTs.

“There is a huge amount of effort and energy going into the treatment of children with autism, virtually none of it is based on a strong empirical foundation tied to sensory function,” Wallace said. “If we can fix this deficit in early sensory function then maybe we can see benefits in language and communication and social interactions.”

Given all the problems in this write-up, I can’t imagine that this research has any value at all. One can’t “fix” a “deficit” that doesn’t exist, and autism does not need “treatment.” It’s very discouraging to think of all the effort that goes into demeaning autistic people instead of trying to help them deal with an unfriendly world.

A couple of caveats:

  1. My comments here are based only on the description linked to here, which in turn seems to have been taken from the press release put out by Vanderbilt University Medical Center. I did not read the original article, which is copyrighted and behind a pay wall, and there is no contact information given for the authors. So much for the free and open flow of scientific ideas and information.
  2. I do not have any training in the field of neuroscience or any related area. My background is in financial economics, and my interest is a personal one. That said, I have learned much and formed many opinions over the past few years.

Mar 03

What is it like to be Autistic?

In an earlier post, I wrote a few comments about a definition of autism that I found appealing.

The difficulty with coming up with any definition of autism is that it’s really hard to capture the essence of what it’s like to be autistic. Even the best definitions leave me hankering for more. Give me more details. Give me examples.

As I have said on countless occasions, I have always known that I am different. Yet, I learned only fairly recently, when I was in my late 50s, that my difference has a name.

Autism is clearly a complex way of being in the world. It is not a disorder, it is not a defective way of being, it is just a difference.

Many gay people claim to have a sense they call gaydar (short for “gay radar”) which enables them to spot fellow gay people. Autistic people seem to have the same ability. Some call is autdar, by analogy. When we encounter one another, something just clicks. I am never so relaxed as when I am in a roomful of autistic people.

How is it that I can know that someone is autistic? Yet I do. Often, it is people I meet who tell me they are autistic or Aspergerian, and I say, “Of course you are!” Yet, it can also be people I meet casually, or people I think about who I have known in the past, or people I read about. How can I know? Yet I do.

In talks that I give, I often use cartoons. My favorite source is The New Yorker, but there are many other places where autistic humor appears. It isn’t labeled as such, of course, and probably not all cartoonists are autistic, but maybe many of them draw their inspiration from autistic people. In any case, when I present my favorite cartoons, they draw many laughs of recognition from audiences who are part of the autism community.

Here’s one.

Years ago, I lived with a woman named Joan. We have long since gone our separate ways, and although we’ve each had more recent romances, we remain good friends. She was with me in my pre-autism-awareness days, and we would often sit in the living room and enjoy a fire while we read our own books or magazines. On many occasions, I would not be in the mood to socialize, so I would take my arm and draw a line down the middle of the couch, telling her not to cross that line. It was my way of saying I didn’t want to be touched.

We parted before I became aware of my autism, but we talked about my discovery from time to time. At one point, she had an “aha” moment and looked at me, “When you did that thing about drawing a line on the couch you meant it, didn’t you? And at the time I thought you were joking!” No, it was no joke. I can be affectionate, but I can also have a need for distance. Does that define autism? Of course not. Yet, is there a single autistic person who could not relate to that? I doubt it.

Mar 03

Nick Walker’s Definition of Autism

Nick Walker says that

What is needed is some good basic introductory “What Is Autism” text that is:
1.) consistent with current evidence;
2.) not based in the pathology paradigm;
3.) concise, simple, and accessible; 
4.) formal enough for professional and academic use.

Since I couldn’t find such a piece of text elsewhere, I wrote one.

I’m glad to see this, because it’s something that I (and many other autistics) have struggled with; how to get away from the misconception that autism is a “defect” or a “disorder” and move to a more accepting paradigm. Autism is definitely a disability, and as enshrined in federal law (IDEA and the DD Act),

Disability is a natural part of the human experience and in no way diminishes the right of individuals to participate in or contribute to society.

I’ve known about my own autism for less than 10 years, and in that time, I’ve pondered what it means to be autistic. I know or meet people, or even read about some, who I know to be autistic, but how do I know that? What is it that defines our common experience? It’s really difficult to pin down. Autism is certainly not defined by the silly words in the DSM. That only describes how autism looks to an outside observer. It doesn’t describe the autistic experience.

Autistic people are speaking out now in ever larger numbers about what it is like to be autistic. The neurodiversity movement is picking up steam, and I believe will eventually expand to include many labels now seen as “disorders.” So here is a step along that path, and a wonderful contribution from a fellow autistic.

Here is Nick’s definition:

WHAT IS AUTISM?

Autism is a genetically-based human neurological variant. The complex set of interrelated characteristics that distinguish autistic neurology from non-autistic neurology is not yet fully understood, but current evidence indicates that the central distinction is that autistic brains are characterized by particularly high levels of synaptic connectivity and responsiveness. This tends to make the autistic individual’s subjective experience more intense and chaotic than that of non-autistic individuals: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable.

Autism is a developmental phenomenon, meaning that it begins in utero and has a pervasive influence on development, on multiple levels, throughout the lifespan. Autism produces distinctive, atypical ways of thinking, moving, interaction, and sensory and cognitive processing. One analogy that has often been made is that autistic individuals have a different neurological “operating system” than non-autistic individuals.

According to current estimates, somewhere between one percent and two percent of the world’s population is autistic. While the number of individuals diagnosed as autistic has increased continually over the past few decades, evidence suggests that this increase in diagnosis is the result of increased public and professional awareness, rather than an actual increase in the prevalence of autism.

Despite underlying neurological commonalities, autistic individuals are vastly different from one another. Some autistic individuals exhibit exceptional cognitive talents. However, in the context of a society designed around the sensory, cognitive, developmental, and social needs of non-autistic individuals, autistic individuals are almost always disabled to some degree – sometimes quite obviously, and sometimes more subtly.

The realm of social interaction is one context in which autistic individuals tend to consistently be disabled. An autistic child’s sensory experience of the world is more intense and chaotic than that of a non-autistic child, and the ongoing task of navigating and integrating that experience thus occupies more of the autistic child’s attention and energy. This means the autistic child has less attention and energy available to focus on the subtleties of social interaction. Difficulty meeting the social expectations of non-autistics often results in social rejection, which further compounds social difficulties and impedes social development. For this reason, autism has been frequently misconstrued as being essentially a set of “social and communication deficits,” by those who are unaware that the social challenges faced by autistic individuals are just by-products of the intense and chaotic nature of autistic sensory and cognitive experience.

Autism is still widely regarded as a “disorder,” but this view has been challenged in recent years by proponents of the neurodiversity model, which holds that autism and other neurocognitive variants are simply part of the natural spectrum of human biodiversity, like variations in ethnicity or sexual orientation (which have also been pathologized in the past). Ultimately, to describe autism as a disorder represents a value judgment rather than a scientific fact.

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.