So the December 17th New York Times refers to the DSM, the Diagnostic and Statistical Manual of Mental Disorders, now in its fifth revision. Will Asperger Syndrome and “high-functioning autism” be merged? Will sensory processing disorder enter the DSM?

The revision, it’s noted, “will have consequences for insurance reimbursement, research and individuals’ psychological identity for years to come,” and, too, for our cultural understanding of what “autism” is. Perhaps it’d be more accurate to call the DSm (whatever revision), the book of being human, all too human.

Away-facing strollers stress out babies, according to a study published on Friday by the British charity National Literacy Trust. CNN reports that “parents who choose a stroller that seats their baby facing away from them could risk long-term development problems in their children”—-and I say to myself, now what kind of stroller did we push Charlie around in, once upon a hot Missouri afternoon or down Summit Avenue on early fall days in St. Paul?

We started him off in one of those bulky EvenFlo stroller-detachable baby seat combinations, referred to as “the buggy” by Jim (the baby seat alone, with the handle, was “the bucket”). As noted here, Charlie was in the 90th-plus percentile for height since he was born, so “the bucket” had soon to be retired and “the buggy” with it and then, ah yes, we had one of those strollers that folds up like an umbrella so Charlie indeed faced away from us.

I can just see the headline: “Away-facing strollers lead to autistic withdrawal”…….. [Shakes head; what next?]

As soon as Charlie started to walk (which was when he was 15 to 16 months old—-always seems to take a while for Charlie to get the coordination down), we pretty much stopped using the stroller. Gripping our hands, Charlie walked and, when worn out, rode high on Jim’s shoulder or (yes, this was when Charlie was much smaller than he is now) piggyback. And I developed a good muscle in my left arm from carrying him, balanced on my hip.

There goes the Peg Perego and bye to the Bugaboo……………

Having considered prenatal genetic testing and autism, what about the possible influence of the environment of the womb on a developing baby? An October 10th article in Slate with the provocative title of Womb Raider asks if future health problems occur during gestation:

Recently, a study of 1,044 mother-child pairs found that 3-year-olds born to mothers who gained too much weight during pregnancy had increased odds of becoming overweight. Somehow, it seemed, these women metabolically programmed their kids to get fat.

The Slate article immediately acknowledges the dangers of this particular line of thinking about children’s health:

The notion that children’s futures are foretold early in life has strong narrative appeal (consider the stories of Aladdin, the Lion King, and Harry Potter, who were all destined for greatness). Increasingly, however, even reality-based researchers and media say that events in the womb and early infancy are critical developmental opportunities with irreversible consequences when mishandled. These notions form the backbone of modern parental anxiety (heaven forbid, for example, that a mother is unable to exclusively breast-feed her newborn). More worrisome, pinning complex public-health problems, like childhood obesity, on failed gestation has a blame-the-victim undercurrent [my emphasis]. Though the supporting research is often weak, this view may encourage inaction: More support for kids, the thinking goes, might not alter the fate set in motion by irresponsible wombs.

This fall, the British Broadcasting Corp. will air War in the Womb, a documentary tracing the origins of later depression, autism, and other problems to “fetal-maternal conflict” during pregnancy.

Mothers of autistic children, and, simply, parents of autistic children know well to be wary about theories that look closely, and even very closely in certain ways, and with questions about what did an expecting mother eat? did she exercise? was she ever on bedrest? did she work and where?. The shadow of the notion of refrigerator mothers—cold and unfeeling and emotionally withdrawn women who caused their young children to become autistic—still lingers, though this theory of autism causation is widely and generally discredited.

With the National Child Study—which “will examine the effects of environmental influences on the health and development of 100,000 children across the United States, following them from before birth until age 21″—-now underway, will mothers find themselves under the limelight, and every detail of “what you did” while pregnant scrutinized?

“When he wants juice, hold the cup in front of him and say ‘joo’ and he will try to say something like that and keep on doing it, and then when he can say ‘joo’ and he wants the juice, hold the cup and say, ‘juice’ and he will try to say it and then he will say it closer and closer.”

That’s what a pediatrician in the Saint Paul Children’s Hospital told me when almost 10 years ago. Charlie was a toddler and not yet talking; the pediatrician nodded about my concerns but told me to give the “joo/juice” thing a try and one day, Charlie would talk.

In the short run, it seemed like the doctor could not have been more wrong. Juice, rice, crackers, cookies, his favorite stacking cups: I said every word carefully and clearly, and kindly, and happily smiling, and Charlie said nothing.

This was in 1998, some months before Charlie was diagnosed with autism. When he started an Applied Behavior Analysis (ABA) program in September of 1999, imitation was one of the first skills that he was taught and little did I know, but imitation would be a long-running foundation for his learning.

A study by researchers at the UC Davis M.I.N.D. Institute suggests that autistic children have “impaired imitation skills” because they spend less time looking at the faces of people who are modeling actions or skills. From today’s Health News Digest:

The study was conducted using high-technology eye-tracking headgear and software that measures with precision the point at which a child is looking when learning a task. Researchers used an actor to demonstrate a task on a computer screen.

“We found that the children with autism focused on the demonstrator’s action and looked at the demonstrator’s face much less often than did typically developing children,” said Giacomo Vivanti, a postdoctoral researcher at the M.I.N.D. Institute and the study’s lead author. “The typically developing children may be looking at the demonstrator’s face to check for information on what to do or how to respond appropriately, information that the children with autism are less inclined to seek. This is an important finding, because children with autism have difficulty learning from others. This might be one key to why that is so,” Vivanti said.
……
In the current study, which was published online in June and will appear in print in November in the Journal of Experimental Child Psychology, 18 children aged 8 to 15 with high-functioning autism were carefully matched with a group of 13 typically developing children. While wearing special eye-tracking headgear, the children were shown video clips that ranged from seven to 19 seconds in length. After viewing each clip, the children performed the demonstrated action. The results confirm previous research that shows that children with autism have difficulty imitating tasks when compared to normally developing children. It also showed that children with autism paid just as much attention to the action being performed as the other children in the study, ruling out previous hypotheses about poor attention to the task.

M.I.N.D. Institute researcher and senior study author Sally J. Rogers speaks of an “imitation deficit” and also notes that these findings suggest that “imitation is not just about repeating an action, but understanding the reason for the action.”

“Do this” and “like me” and “Copy me” or “say this” I say now to Charlie and he looks up, looks in my direction, and tries to do what I’m doing, though in his own way—”perfect copies” aren’t required.

Researchers at Rutgers University in Newark are studying how our visual system interprets the intent of subtle physical movements. Today’s PhysOrg quotes the leader of the research, Dr. Maggie Shiffrar, professor of psychology:

Almost all people possess some autistic tendencies, explains Shiffrar, but her research shows that those with the fewest autistic tendencies “are best at detecting the weak signals provided by body movement.” Thus, people with very few autistic tendencies are the best at interpreting emotion from body movement.

Working with test participants under a $750,000 grant from the Simons Foundation, Shiffrar has discovered that people with autistic spectrum disorder (ASD) tend to view other people and objects alike. It is as if they view the world through a lens devoid of emotion.

People and objects appear to hold the same level of significance.

People with few autistic tendencies, on the other hand, have visual systems that analyze human movement and the movement of objects differently. As a result, when presented with limited information they find it easier to identify people over objects.

At her Research on Autism at Rutgers (ROAR) lab, Shiffrar is videotaping people’s body movements. Lights are attached to the major joints; lights are also attached to objects (a moving tractor, a dog) and research participants are then shown only the movement of the lights:

Those with ASD tend to identify people and objects with an equal rate of accuracy, while those with few autistic tendencies are much better at identifying people and less able to identify objects from point-of-light representations.

“The way people move their bodies tell us volumes about their actions, intentions and emotions. To interact well with others, we need to be able to perceive this all accurately,” says Shiffrar. “What we hope to determine through our research is whether people with ASD have trouble perceiving human movement because they avoid human contact in order to function, or if it is their visual system that is treating people as objects.”

Shiffrar’s research is funded by a $400,000 Homeland Security grant from the National Science Foundation—-it’s thought that her work might lead to developing computer models to interpret body movements, as “being able to quickly and accurately interpret body movements from a distance would allow for the identification of potential terrorist activities in crowded areas such as airports, subways and city streets.” Previous research on autism and body movements has focused on the eyes and mouth. It’s been pointed out that something like eye contact can vary from culture to culture, and the same holds for body language and gesture. Wonder if they’ll be effort to develop “body reading” programs, just as there are already “mind reading ones for autistic children.

The brain seeks patterns even when none exist, according to an October 3rd Scientific American podcast:

When we feel like we don’t have command of our own fate, our brains often invent patterns that offer a sense of self-control. Some folks knock on wood or step over cracks in the sidewalk. Scientists call this illusory pattern perception. Work published in the October 3rd issue of the journal Science offers a look inside our heads as they try to make us feel less helpless.

Researchers from the University of Texas at Austin devised six experiments to test students’ reactions to different situations of uncertainty. One experiment mimicked the stock market, while another asked students to search for images in television static. Time and again, students saw images where there were none and found stock patterns that didn’t exist. The authors then asked students to perform self-affirmation exercises instead of looking for external design. These exercises calmed them and increased their capacity to see, well, reality.

I’ve often noted that Charlie creates, and seems to need to create, order around him. He often does so by what are considered “classic autistic behaviors”—lining items up (his shoes) in alignment with the floorboards, carefully setting his Leapster perpendicular to the throw rug and making sure the attached pen is set just so. Once I thought I had to disrupt these orderly line-ups; when Charlie got very upset, I told myself I was doing what I should, by showing him that things did not have to be that way. Since then, I’ve learned that lining things up can be comforting and self-soothing and Charlie’s learned not to get annoyed if someone moves one of his shoes or whatever. He also seems to have things laid out rather than piled up so he knows where they are and, too, that they are around, that they exist.

Last week, after coming home from school, he lined up his black shoes, blue bookbag, and red homework folder: Essential objects, all in a row, in a pattern that says more than meets the eye.

Yes, I do think that the hypothetical “vaccine-autism” link distracts us from the key issues of education, services, and understanding about autism. Nonetheless, vaccines were the topic of some of last week’s top posts:

• Musings on Camp and Independence
  Should I be sending Charlie to camp?
• The Dangers of DIY Doctoring
  Doctors and patients at odds, and the latter more armed with (mis)information than ever.
• Nintendo At School
  Charlie is learning how to play video games, at school.
• Michael Savage’s Parting Shot
  Ah, Michael, just give it up!
• Public Spaces Mean Extra Precautions
  What if I lose my child in a busy public place?
• Not Able to Play In Your Own Back Yard
  Is this about adhering to building codes or disability rights?
• Once Again, TV Does Not Cause Autism
  The title speaks for itself.
• The Truth Is Out There, But Smallpox?
  Oh dear, Age of Autism did it again.
• Strapped to a Toilet in a Darkened Room
  Why do people think these “methods” are going to “work”?
• The Curious Reports of Vaccines and Autism on CBS
  Doing some detecting to figure out how a certain piece of correspondence appeared somewhere; or, what’s going on at CBS news?
• Homemade Remedies
  About white powders and goo, all brewed up in kitchens, and marketed to parents of autistic children.

This week my summer school class on Psychology and Literature read Mark Haddon’s The Curious Incident of the Dog in the Night-Time. On Thursday morning the students had a quiz in which they had to “diagnose” Christopher, the novel’s main character, with autism or Asperger Syndrome, based on the DSM criteria. We also talked about the book in terms of development (looking at Erik Erikson’s stages) and also in regard to theories of social psychology, such as moral exclusion and dehumanization; its concrete, visual language; its plot that’s set into motion when Christopher finds Wellington, a neighbor’s black dog, impaled with a gardening stake and determines to find out whodunnit and so starts (as he says) “detecting.”

In his detecting, Christopher makes careful observations of possible “suspects” and (precisely what his father admonishes him not to do) asks too many questions—–kind of what I feel I do all day to figure out Charlie’s mostly wordless (but rich) communication. Detecting also is the general modus operandi of anyone interested in figuring out what causes and how to “treat” autism; autism’s said to be a mystery (and so represented by the puzzle piece). Yesterday I took a bit of an X-Files “the truth is out there” angle on this; today—well, I’ll start by quoting the end of a July 25th post by Sharyl Attkisson.

As the former head of the National Institutes of Health, Dr. Bernadine Healy has said: perhaps some answers to the autism/ADD mystery are waiting, but you have to go looking to find them.

Attkisson’s piece is entitled the Debate over Vaccines and Autism/ADD and is about the case of Hannah Poling, the Georgia girl whose “pre-existing mitochondrial disorder…. was ‘aggravated’ by her shots,” as was conceded in March by the government in the Court of Federal Claims. According to Attkisson, after the decision in Hannah Poling’s case was announced, “those who reject any possible link between vaccines and autism/ADD went on the offensive. As an example, she cites Dr. Steven Novella’s recent blog post on this “false controversy,” and the response by Hannah’s father, Dr. Jon Poling: “‘Regarding your entry on Hannah’s case, your blog entry unfortunately propagates several of the mistakes from the media.’” Why in the world, Attkisson’s post implies, would a scientist—a medical doctor—not want to investigate this “mystery”—be afraid of something?

Dr. Poling, and other staunch advocates of a link between vaccines and autism are not afraid, it is suggested, and Attkisson’s post was followed up later on that day (July 25th) with an investigate CBS News report, How Independent Are Vaccine Defenders?, in which a number of “conflicts of interest” were detected out between scientists, vaccine researchers (like Dr. Paul Offit, frequent target of anti-pro-vaccine safety supporters) and health organizations (the American Academy of Pediatrics, Every Child By Two) and (get ready to gasp), drug companies:

But CBS News has found these three have something more in common - strong financial ties to the industry whose products they promote and defend.

The vaccine industry gives millions to the Academy of Pediatrics for conferences, grants, medical education classes and even helped build their headquarters. The totals are kept secret, but public documents reveal bits and pieces.

A $342,000 payment from Wyeth, maker of the pneumococcal vaccine - which makes $2 billion a year in sales.

A $433,000 contribution from Merck, the same year the academy endorsed Merck’s HPV vaccine - which made $1.5 billion a year in sales.

Another top donor: Sanofi Aventis, maker of 17 vaccines and a new five-in-one combo shot just added to the childhood vaccine schedule last month.

As has been pointed out, the big story that CBS News is unearthing here is that (says Autism News Beat): evidence that people are paid for work.

(Certainly good news to me, in the midst of what’s been very much a working summer.)

The mystery is nothing mysterious, but an ordinary common place. (Left Brain/Right Brain and Orac, and I Speak of Dreams, and Orac again, have more to say on other “conflicts of interests.”) In other words, the vaccine part of this blog post should end here and I should be getting back to what my students had to say about The Curious Incident, what I said last Monday in a lecture I gave on “Myth, Ancient and Modern, and Autism.”

But no. The plot thickens:

Concerned about the misinformation cast by Attkisson’s report, Voices for Vaccines, which is “administratively housed within the Task Force for Child Survival and Development, an Atlanta-based 501(c)(3) organization” and which was “formed to speak for those who value the vital protection provided by vaccines and want accurate communication of their safety profile,” sent a letter to the senior producer at CBS News responsible for the aforementioned report. You can read the letter here. Mike Stanton at Action for Autism writes that this letter was published on the Age of Autism website on July 31st after “someone at CBS leaked a fax from Voices for Vaccines”; Age of Autism then published the letter under the misleading byline “Vaccine Industry Group Calls on Couric and Attkisson for CBS Retraction.”

In other words, a letter meant for the senior produce at CBS News was “leaked” and then somehow ended up appearing on a website that believes that there is a link between vaccines and autism, and that, from time to time, posts correspondence, documents, et alia, from those who it sees as promoting views contrary to its own, and with robust declaration of the Freedom of Information Act.

Figuring out the cause of autism is indeed like trying to solve a “murder-mystery,” which is just the task Christopher in The Curious Incident assigns himself. Who, he wants to know, killed the dog Wellington?

(Sort of like the question, what or who made my child become autistic?.)

Christopher figures out “whodunnit,” though not in the way he (a fan of Sherlock Holmes stories) had thought. And perhaps, too, those who see the story of autism as a great “who dun, what dun, made my child autistic” will have that mystery solved for them by other means than they think.

Because isn’t that the satisfying thing about mysteries: They get solved, though not in the way you had been thinking they would.

Writer Ann Bauer’s adult son is autistic and, in an article in today’s Washington Post, she writes about the question that are always just under the surface of my conscious thoughts:

What happens to Charlie after Jim and I are not here?

Bauer, the author of the novel A World Ride Up the Cupboards, has described a terrifying episode in her family’s life, when her son (at 17) was misdiagnosed as psychotic and had autistic catatonia. She’s also written about the struggle to find and help him keep a job, and how, too often, she’s gotten the message that Autistics Need Not Apply. But the struggles are also because of the world we live in, a world that talks about “raising awareness” but has yet to provide sufficient (or even adequate) and appropriate services not only for autistic children of school age, but for autistic adults. Writes Bauer:

My son is flailing in a system that doesn’t know how to deal with him. I admit I’m of little help. He doesn’t look different from other 20-year-olds, and he happens to be of normal intelligence. But socially, he is as lost as he was at age 4, when he withdrew, quit speaking and stared for hours at his own hand. Over the past year, he’s been placed in a series of group homes for people with mental retardation or psychosis. None has been right.

His senses are overly acute, which means he experiences the world largely as pain. Noises, colors, smells — they’re all too vivid. He is prone to sleeping his days away rather than working in the yard. He likes dark rooms and movies and has the urge to date but cannot work up the nerve to speak to girls, much less ask one out.

Bauer describes a family down the street—60-ish father, adult son with Down Syndrome—who, as she says, she envies, because they’ve “figured out a cohesive, workable system of support.” She writes:

…..while I wouldn’t trade [my son] — the person to whom I gave birth — for any other, I wish that his disability were as recognizable as Down syndrome and that we, his parents, were more effective at helping him achieve a satisfying life. Right now, we’re flummoxed by the issues that arise as a child with autism veers into adulthood: higher education, employment, independent living, romance.

Last year, New York Times ran an article about prenatal testing—about 90 percent of women who learn that they will have a Down syndrome child have chosen abortion—and the “dwindling” population of those with Down Syndrome. Parents of children with Down Syndrome are advocating to get a positive message out there about their children and life with them. As Bauer writes in today’s Washington Post, it’s more than possible to create a good life for an adult child with disabilities and it’s more than worth it. In the autism community, even as debate “splinters” (as Bauer writes) over “philosophical issues—-”cure and acceptance“—it’s the concrete issues of where our kids will live, how will they spend their days, who will care for them, that cause the sleepless nights and are, to some extent, behind wishes for “recovering” a child, as if that would ensure that a child would be able to take care of him or herself.

It’s not been easy for Charlie for me to be gone for two nights (though I’ll be back in New Jersey in less than 24 hours). I went because I feel he’s ready to handle it. Jim’s taking Charlie to the beach this afternoon and I’m grateful as ever for technology—the basic cell phone—-so we can talk about any “situations” that ensue. Charlie now has the right supports around him, a teacher who knew why he was crying and gave him words to describe it, a speech therapist who rearranged her schedule so she could come on Friday.

It’s taken us years to get the right school placement for Charlie. One of the most heartening things about his school is that more of the aides and teachers I’ve met have talked about wanting (yes, wanting) to work with older autistic kids, with teenagers and adults. With the right supports, understanding, and the belief that they can do it, our disabled children who will (all too soon; sigh; onward) be disabled adults can go very very far. Very.

Some aspects of autism do run in families, according to a new study about how parents of autistic children process facial expressions. As noted in today’s Science Daily, neuroscientist Ralph Adolphs of the California Institute of Technology and psychiatrist Joe Piven at the University of North Carolina at Chapel Hill studied 42 parents of autistic children and found that some of the parents evaluated facial expressions in ways similar to autistic individuals. 15 of the parents were classified as “aloof”—not preferring interactions with others or having “few close friendships involving sharing and mutual support”— according to psychological testing.

The parents participated in an experiment that measured how they make use of the face to judge emotions. The subjects were shown images depicting facial expressions of emotion that were digitally filtered so that only certain regions of the face were discernible–the left eye, for example, or the mouth. The subjects were then asked to decide as quickly as possible if the emotion depicted was “happy” or “fear.” The part of the face shown, and the size of the revealed area, randomly varied from trial to trial.

An analysis of the subjects’ correct responses revealed that “aloof” parents relied much more heavily on the mouth to recognize emotion than they did on the eyes, as compared to nonaloof parents and, to a greater extent, to a group of parents of children without autism. Prior studies by Adolphs and his colleagues have shown that humans normally evaluate emotions by looking at the eyes–but studies by Adolphs and Piven have shown that individuals with autism do not.

“We found that some parents who have a child with autism process face information in a subtly, but clearly different way from other parents,” says Adolphs. “This is evidence for the hypothesis that the parents with the autistic child have brains that function somewhat differently as well”–an idea that he and other researchers are currently investigating through brain imaging studies. One area of interest is the amygdala, a region located on either side of the brain in the medial temporal lobe that is known to process information about facial emotions and may have abnormal volume in both autistic individuals and their nonautistic siblings.

Researchers suggest that the study (which is published in Current Biology) may lead to research about genes that are responsible for face-processing.

I am pretty sure I look at people’s eyes—now I will be very conscious of this.