Happy 2009!

We’re leaving tonight on the red-eye to go back from the Bay Area to New Jersey so, in the interest of being able to spend more time in the California sunshine with my guys and my parents, and since it is, indeed, 2009, a few more highlights from 2008.

August means one thing in my household—-two weeks at the beach, at the Jersey Shore. Not surprisingly, it was still impossible to avoid talk about vaccines. A new clinical trial of the GFCF diet was announced. While people have strong disagreements about the “right” of parents to vaccinate or not, everyone agreed that the use of “retard” in the movie Tropic Thunder was unncessary.

Charlie started middle school in September and, by October, he was deep into middle school blues, and Jim and I found ourselves back into the old familiar advocacy mode, including meetings with teachers present and past, Charlie’s case manager, ABA consultants, school district administrators (but not, yet, “legal counsel” of the sort this family in Montgomery County (Virginia) has had to take).

Also in September: A 13-year-old autistic boy treaded water for 15 hours off the coast of Volusia County in Florida, until he was found the next day.

Another study showed that the MMR vaccine does not cause autism.

And, with Election Day nearing, the choice of Alaska governor Sarah Palin—whose youngest son, Trig, has Down Syndrome—-as Senator John McCain’s running mate got the (Special Needs) Mommy Wars going again.

In October, I (former warrior mom that I am) was on a Science Blogs book club panel writing about a newly published book, I get a lot of hate mail”: Autism’s False Prophets by Paul Offit. (And I’ve not been feeling that I need beware Jenny McCarthy and her so-called angry mom-mob; I know that someone’s watching over me.)

More to the point than “debates” about vaccines and autism was the passage of the mental health parity bill.

And then, in the middle of October, was the McCain-Obama debate in which McCain apparently confused Down Syndrome and autism, and after which I was interviwed on Newsweek about the candidates.

Around the same time, Denis Leary did a Michael Savage, Charlie seemed to grow taller every week, and David Kirby exonerated thimerosal, and as quickly said he hadn’t.

November brought a new theory about autism and genetics, another suggestion for identifying autism in infants (”strange play“), and more speculation about autism and schizophrenia as the same. A mandatory autism registry was proposed in New Jersey; researchers began to look for autism’s causes at home; and I attended the November 21st meeting of the Interagency Autism Coordinating Committee (IACC), at which the draft of the Strategic Plan was discussed.

December, this past month, began with Autism Twitter Day, organized by Bonnie Sayers; an exchange about some dangerous ideas about autism, and some events concerning autistic rights, from an autistic girl in Wisconsin becoming a Brownie after being asked not to return to a special needs Brownie troop, to calls for the inclusion of autistic individuals on the boards of autism organizations. (This letter states why.)

And some final thoughts as 2008 ended: What would you like to see in autism legislation? (Something besides insurance coverage for specific therapies.) And isn’t it time for vaccine talk detox? (Yes.)

So farewell to 2008 and onward into the new year, which I suspect holds some more changes all the time for Charlie, and which holds a big one for me, too—-but more on that tomorrow, once we’re back home in Jersey.

Saw those 4 letters on the license plate of an older SUV while driving around Berkeley on Tuesday—–no kidding!

What goes around, comes around.

1952. The DSM-I says this about “000-x28 Schizophrenic reaction, childhood type”:

Here will be classified those schizophrenic reactions occurring before puberty. The clinical picture may differ from schizophrenic reactions occurring in other age periods because of the immaturity and plasticity of the patient at the time of onset of the reaction. Psychotic reactions in children, manifesting primarily autism, will be classified here. [via Unstrange.com; my emphases]

And in 1968, in the DSM-II, here is the definition of “295.8 Schizophrenia, childhood type”:

This category is for cases in which schizophrenic symptoms appear before puberty. The condition may be manifested by autistic, atypical and withdrawn behavior; failure to develop identity separate from the mother’s; and general unevenness, gross immaturity and inadequacy of development. These developmental defects may result in mental retardation, which should also be diagnosed.[via Unstrange.com; my emphases]

Before autism was “autism” as we talk about it today, and before there was such a thing as “autism spectrum disorder,” autism was “childhood schizophrenia.” Now bring up autism and schizophrenia in the same conversation and you’ll get a heated response. Back in February, Dr. Nancy Minshew, Director of the University of Pittsburgh’s Center for Excellence in Autism Research, was quoted in the Pittsburgh Post-Gazette as saying that, in the past, some autistic children may have been mislabeled as schizophrenic, and placed in state hospitals or institutions; some (mis)interpreted her comments as somehow as suggesting that autistic children were schizophrenic, when Dr. Minshew was noting the differences in how we once classified and spoke about autism, in contrast to how we do today. Drawing on a new theory about autism and genetics, a November article suggested that autism and schizophrenia are the same disease.

A review of the research literature by developmental psychologist Annemie Ploeger suggests that autism and schizophrenia share a common origin. The review is from Ploeger’s doctoral thesis, “Towards an integration of evolutionary psychology and developmental science: New insights from evolutionary developmental biology” and is summarized in the December 16th Science Daily. Ploeger looked at whether there was a connection between autism and schizophrenia by focusing on the first month of pregnancy. She noted certain “physical abnormalities” in autistic children: “protruding ears,” “peculiar toes,” “a large head and intestinal problems.”

Ploeger’s research reveals that in the period between 20 and 40 days after fertilisation, the embryo is highly susceptible to disruptions. In this period, early organogenesis, there is a lot of interaction between the different parts of the body. If something goes wrong with a given part of the body, it greatly influences the development of other parts of the body. As people with schizophrenia and autism frequently have physical abnormalities to body parts formed during early organogenesis, Ploeger concluded that the foundation for these psychiatric disorders is laid very early during pregnancy.

The existence of a relationship between unhealthy behaviour during pregnancy and the subsequent development of schizophrenia and autism in the child was already known. However, Ploeger’s hypothesis that the early organogenesis stage is the most critical, is new. Ploeger bases her hypothesis on an extensive study of scientific literature in this area. She often had to make use of related studies; although a lot of research has been done into prenatal influences on the development of schizophrenia and autism, little is known about the influence that the period between 20 to 40 days after fertilisation has.

From this description, it’s not clear what sort of factors—the mother’s genetic make-up; any environmental agents—are seen as having an effect of early organogenesis, though “unhealthy behavior during pregnancy” of course suggests that the mother’s activities and behaviors are particularly under consideration here. Ploeger also notes that some women who took Softenon for morning sickness in the 1960s and 1970s gave birth to severely disabled children, as a result of taking the medicine: “Autistic children were born in four percent of pregnancies in which softenon was used, whereas normally this figure is 0.1 percent.”

This study, along with another noted on Monday about paternal age and children’s health, is focusing on how parents’ behaviors and decision (taking certain medications, having a child when one is older) can possibly have an impact on a child being autistic or not; on a child being “healthy” or not—-I’ll end by noting that I, and some other friends who have autistic children, followed all the recommendations about “how to have a healthy pregnancy” exactingly, and our husbands were younger than 40.

What comes around, comes around.

The terrible two’s are really just another name for “regressive autism spectrum disorder”?????—-so suggests a professor of Communication Sciences and Disorders at Temple University. From yesterday’s UPI.com:

Gerry A. Stefanatos of Temple University in Philadelphia said regressive autistic spectrum disorder describes children who have been diagnosed with autism who demonstrate a history of a regression. The regression refers to a marked loss of previously acquired developmental skills such as language or social ability.

“Often children with regression aren’t being seen by professionals at the time of the loss of skills,” Stefanatos said in a statement. “The parents are aware of a problem, but not sure what it is so they don’t seek medical or psychological help until the symptoms persist for over a year.”

The source for Prof. Stefanatos’ statement is not mentioned in the UPI.com article. It makes sense, somewhat, to make a connection between the terrible two’s and the identification of autism, as two (or even younger) is around the age when autism is often first noted in a child. But saying that terrible two’s—which seem to be pretty common in most children—are, in and of themselves, signs of autism—-might lead to quite an upsurge in people seeking to have their toddlers evaluated for autism.

In her Domestic Disturbances column today, Judith Warner writes about “emotional enmeshment,” which she defines as “the boundary collapsing” that, she thinks, is the “signature characteristic of motherhood (and parenthood) in our time.” Warner scrutinizes her relationship with her two daughters, aged 11 and 8. While she notes that she’s sought to establish boundaries between herself and them:

I despised the cliché “you can only be as happy as your least happy child.” What drivel this was, I thought. What self-indulgence. Wasn’t it a parent’s responsibility to remain whole in the face of a child’s unhappiness, the better to buoy him or her through difficult times?

As the years passed, I refused to be a good Suzuki mother and sit in on my daughter Julia’s every violin lesson and daily practice. I resisted the pull to immerse myself in the girls’ school, at least in part out of my belief that they needed their own private space. I refused to dress in adult-sized versions of Limited Too clothing; I never let the expression “Awesome!” pass my lips.

And yet, with time, only the philosophy stayed intact. Emotionally, the boundaries steadily dissolved.

Despite her efforts to not overly enter the world of her children, Warner finds that she’s done quite the opposite. She is, she realizes, only as happy as her children, period: Enmeshment, Warner suggests, is part and parcel of motherhood, and parenthood, these days.

So what about for those of us who are parents of kids with disabilities? Of kids who, like my son, have many more needs than many kids? Who rely on us or someone else—-who have to rely on us or someone else—to assist with communicating, with various things (some pretty basic) that children their age can do for themselves?

I mostly know what happened to Charlie at school because his teacher and I email each other, and because she visits us and Jim and I visit Charlie’s classroom periodically. Charlie’s teacher also sends home a card (with a magnetic strip) on which is a recording of his voice saying what he did today. Charlie runs the card through a Language Master and repeats the phrase (yesterday it was “I shot a basket”).

Charlie does like the company of other children, who he tends to see mostly in planned, organized activities, like bowling, or at school. He spends a lot more time with Jim and me than most children his age. And, because his language is so limited, spending a lot of time with Charlie is the only way to understand how what he does and what he says (verbally and non-verbally) are indicative of how he’s feeling and what he’s thinking.

Jim and I long ago said to each other that, unless Charlie was happy and in a school where he was learning and thriving, we could never be happy or satisfied with ourselves, and it’s because of this that we’ve moved, given up jobs, taken jobs that we didn’t really want, made decisions that probably weren’t the best for our careers but have been better, if not best, for Charlie.

So there you have it. I’m enmeshed, though I rather suspect I would have been this sort of mother regardless of “what” my child “had.” Charlie’s being autistic, and with a lot of needs, makes enmeshment inevitable.

Warner ends her post by reflecting on something said by psychologist and author Michael Thompson:

“You cannot let your dream dominate your child’s journey.”

One hears so often that a parent finds out that their child has autism and that their dreams as are dashed and despoiled. But really, a parent has to see that what a parent wants for a child, and what that child wants for her or himself, are two separate, different things.

Of course it’s harder for Charlie to tell us exactly what it is he wants and hopes.

And on the other hand, maybe it’s also harder for us parents of kids with disabilities to listen and let ourselves really hear what our kids are dreaming of.

One of my students is writing her senior thesis on environmental psychology and classrooms for special needs students. This is the fourth year I’ve known her; she’s an education major and has a special needs sibling, and I’ve long shared stories with her about Charlie and found her a sympathetic and supportive presence. Early yesterday afternoon, she stopped by my office and she asked me a series of questions, as research for her thesis, and I’ve been reflecting on her questions and my answers to them.

What do you worry most about for Charlie?

I’m afraid this one was too easy to answer: A job and a place to live, I said. And paused. I said: What happens to Charlie when we’re gone…….

The other questions evoked less overtly existential sorts of answers from me. We talked about what Charlie’s current classroom looks like; whether I thought that his physical environment had affected him (yes, for sure, I noted); if his teacher and therapists were aware of environmental psychology (of the concepts, yes, but not explicitly, I said); whether I thought that teaching methods or the physical classroom space were more important.

To the last question, I answered emphatically in favor of good teaching methods and good teaching, and good teachers, as being the most important. A classroom can have all the accoutrements, smart boards and computers and the like, but that doesn’t mean the students, all the students, any students will learn. Whether learning at a little blue plastic Little Tykes table in his bedroom in our rented St. Paul duplex or in a public school classroom in New Jersey, it’s the people who’ve made the difference in Charlie’s learning.

And so the interview turned into more of a conversation, with my student and I sharing stories about teaching 7th graders (some of my first, and most formative, teaching experiences were when I was a middle- and high-school Latin teacher in St. Louis). She noted that her students, the boys especially, needed to get up and be in motion, and that sitting at a desk with bells ringing and announcements blaring periodically did not create happy memories in any student. I talked about the effects of no playground and no more recess. Charlie does have gym, and his APE teacher is great at adapting all kinds of sports (basketball now) for his class, but it’s not the same. We talked about proprioceptive input and I mentioned how ever-growing Charlie often doesn’t seem quite sure how to arrange his suddenly longer legs under desks and atop chairs that seem  abruptly smaller.

We could have talked for another hour but, as ever, I had to run out the door to meet Charlie’s schoolbus. As I was packing up my bag, I found myself saying that the topic of adapting and changing the physical environment raised a fundamental question for me: How much to seek to change the environment, the world around Charlie, and how much to seek to teach him to adapt, to change himself?

And, as I opened the door to my car, I noted that I’ve yet no answer.

There’s a new study by Molly Helt et al. out about recovery from autism in the December Neuropsychology Review. Kev at Left Brain/Right Brain has an overview; here’s the abstract:

Although Autism Spectrum Disorders (ASD) are generally assumed to be lifelong, we review evidence that between 3% and 25% of children reportedly lose their ASD diagnosis and enter the normal range of cognitive, adaptive and social skills. Predictors of recovery include relatively high intelligence, receptive language, verbal and motor imitation, and motor development, but not overall symptom severity. Earlier age of diagnosis and treatment, and a diagnosis of Pervasive Developmental Disorder-Not Otherwise Specified are also favorable signs. The presence of seizures, mental retardation and genetic syndromes are unfavorable signs, whereas head growth does not predict outcome. Controlled studies that report the most recovery came about after the use of behavioral techniques. Residual vulnerabilities affect higher-order communication and attention. Tics, depression and phobias are frequent residual co-morbidities after recovery. Possible mechanisms of recovery include: normalizing input by forcing attention outward or enriching the environment; promoting the reinforcement value of social stimuli; preventing interfering behaviors; mass practice of weak skills; reducing stress and stabilizing arousal. Improving nutrition and sleep quality is non-specifically beneficial.

There’s discussion over the specifics of the study at Kev’s blog; I’d like to consider the ramifications of the whole notion of “recovery from autism” as it can affect parents’ decisions about “treatments” and “therapies” for autism, and also on the popular perception of what autism is.

Recovery can be distracting. It can lead you to make “curing” a child of autism completely and of making her or him “typical” and “normal,” over and above seeking to help a child develop, learn and grow as much as she or he is able. It can lead you to focus on a single long-term wish of “recovery,” so that those smaller gains, while remarked upon, seem like small steps on the path toward a bigger something else,”recovery.”

Further, the notion of “recovery from autism” suggests that autism is something to be recovered from; is a disease or illness. While some do prefer to view autism this way, such a view can be detrimental to an understanding of autism as a lifelong condition. And, it can be harmful not only to the perception of autism, but also simply to autistic persons themselves. Sure, you can’t catch autism, but the more that is heard about autism as “maddening” and devastating, debilitating, etc.,, etc., and the more that the “behavior problems” of autistic children are the main thing that is described, the more a seed is planted in people’s minds that doing away with autism, or at least “getting the autism out of one’s child,” is what has to be done. In the name of recovery, some have tried treatments (such as chelation, often of an “alternative” nature, that have no evidence beyond anecdotal reports to recommend them, and that have sometimes proven dangerous, if not fatal, to a child’s health.

The entire December issue of Neuropsychology Review is about autism, with the title of “Autism Spectrum Disorders: Complex, Controversial, and Confounding.” While the article on “Can Children with Autism Recover?” may get a great deal of attention, other studies to note are on the rising prevalence rate and the proliferation of theories; regression and autism; the “triad of impairments“—social interaction, communication, and flexible imaginative—used to diagnose autism; and bridging the gap between neuropsychological evaluations and educational planning.

I know there’s a lot of varying opinions about “recovery from autism.” When my son was first diagnosed, and in the wake of reading books like Catherine Maurice’s Let Me Hear Your Voice: A Family’s Triumph Over Autism, it seemed that we could not not try to “recover” Charlie. But then I started to realize that I was valuing “recovering” Charlie (whatever that meant) over cheering on, appreciating, celebrating the small gains Charlie made and, too, life with Charlie.

I hope I’m not so distracted anymore.

Patternicity.

It’s a term that refers to “the tendency to find meaningful patterns in meaningless noise,” as noted by Michael Shermer in the November Scientific American:

Traditionally, scientists have treated patternicity as an error in cognition. A type I error, or a false positive, is believing something is real when it is not (finding a nonexistent pattern). A type II error, or a false negative, is not believing something is real when it is (not recognizing a real pattern—call it “apatternicity”).

However, as Shermer notes, we don’t have a “Baloney Detection Network in the brain to distinguish between true and false patterns”—-patternicity does seem to be at work when it comes to theories of autism causation. There’s no doubt that some believe that a vaccine really caused their child to be come autistic (a “type I error, or a false positive”), and, too, there seem to be many who don’t believe that there really is evidence refuting a vaccine-autism link (and who do not recognize a real pattern—who are exhibiting “appatternicity”). Shermer cites a paper in the the October Proceedings of the Royal Society B “The Evolution of Superstitious and Superstition-like Behaviour,” by Harvard University biologist Kevin R. Foster and University of Helsinki biologist Hanna Kokko. They draw on evolutionary biology to demonstrate that

whenever the cost of believing a false pattern is real is less than the cost of not believing a real pattern, natural selection will favor patternicity.

Belief in the false pattern of “vaccines cause autism” persists because the “cost” of believing this is more readily grasped, you might say, requires less of certain efforts, than the alternative. There’s a deep-set tendency in us to find, to have meaning, in whatever the world presents to us; to be superstitious (if not a bit paranoid); to see causal associations just because something happens after something else; to assign cause to effect incorrectly.

Lest this seem merely to be yet another “vaccines don’t cause autism” post, I’m tacking on an account of our Thanksgiving and, yes, patternicity.

Patternicity seems another way to explain Charlie’s need to create order, in placing his shoes with the socks inside them perfectly lined up together; in packing his lunch box with a Capri Sun, 4 small plastic containers, and bags of carrots and grapes when he gets home from school; in arranging his CDs on the floor of his room just so. When Charlie was younger, if we so much as moved one shoe or colored block, his agitation was broadcast far, wide, and loudly. These days he’s easy-going if anything gets moved and sometimes leaves it askew, sometimes restores his order.

Charlie having some extra days off from school, I’ve figured that his need for order—for ways to mark and structure the days—increases. He spent a lot of Thursday (aside from loafing on the couch and going on an hour-long bike ride with Jim on a cold afternoon) in his room, trying to stick all the CDs into his old paper pumpkin trick-or-treat bag. There are way too many CDs to fit into the bag and Charlie did not let this deter him from trying to cram them all in with the result that that bag kept splitting and, in the midst of pumpkin pie baking and general Thanksgiving food preparations, I heard the cry of “I need help!” a couple of times.

The pumpkin bag was literally bursting at its seams when I went into Charlie’s room. With three kinds of tape—Scotch, masking, and duct—I tried to patch together the ripped side and the jagged places where CD corners had poked through the candy corn design. Charlie watched me intently and occasionally offered very long pieces of Scotch tape that he’d cut with scissors. At one point, I tried to tape a piece of a brown paper shopping bag onto the pumpkin bag, to make it bigger so all the CDs would actually fit.

“No, no,” was Charlie’s immediate response at my attempt to graft a piece of one bag onto another. Well, of course: What does a piece of brown paper bag have to do with an increasingly dilapidated paper pumpkin trick or treat bag? To tape one onto the other would be to disrupt the order of things—to upset the pattern—-and the cost was too high.

After I’d taped the bag together, I returned to Thanksgiving dinner preparations (now why is it that Americans feel a need to eat a specific menu of turkey, potatoes, cranberry sauce, pumpkin pie?) and Charlie returned to his CD-ordering-and-reordering. When we called Charlie to eat the turkey, we heard “help, fix”: When I went into his room, I beheld the pumpkin bag, so recently, carefully, taped back to wholeness, packed full of CDs with one side ripped open and flapping around.

Apparently there’s a new order to understand here.

New theory says autism and schizophrenia same disease, says today’s Chronicle-Herald about the new theory about autism and genetics. According to this latest theory (per last Tuesday’s New York Times), “an evolutionary tug of war between genes from the father’s sperm and the mother’s egg can, in effect, tip brain development in one of two ways.” But (keeping in mind that autism was once referred to as childhood schizophrenia) can—should— autism and schizophrenia be equated?

Autism myths abound and Kev is collecting, and dissecting, them at this new site. One myth that especailly irks me is the notion that autistic kids are “in their own world” and “withdrawn into themselves” and, generally, “out of it.”

My son Charlie is thoroughly engaged in and attuned to the goings-on of the world all around him. He may not look like he is, and he often does no respond in the usual ways that people are accustomed, to indicate social awareness. Due to his limited language, people tend to assume, or too quickly assume, that he does not understand what is said to him.

But never underestimate how carefully someone, and someone who doesn’t have the “usual,” “expected” responses, might be tuning in.

It’s apparent to everyone—Jim and me, Charlie’s teachers and therapists—that he has a lot of feeling about the arrival and departure of my parents, aka “Gong Gong” and “PoPo” (that’s the Cantonese for “maternal grandfather” and “maternal grandmother”). Charlie gets visibly, thoroughly anxious a couple of days before they visit, in the middle of their visit (as he senses that they’ll be departing at some point), the day before they leave, and the day of their departure. He’s less in control of his nerves, one could say, and generally on edge.

This is painful for Charlie, and for everyone (and certainly my parents who are regular readers here). We all spend a fair amount of time strategizing about how to help Charlie deal with so many feelings, with anxiety, joy, anticipation, happiness; with a host of contradictory feelings that are all mixed up and experienced at once. We’ve tried photos and picture schedules but sometimes those set Charlie even more on edge. I usually try to mention that my parents are coming and going in a rather casual, nonchalant manner, in the course of a general conversation about things, in the hope that it’ll sounds like a routine occurrence, and so be felt more like that by Charlie.

Charlie gave my parents an enthuasiastic and smiley send-off Monday night. He’d gotten a buzzcut at the barber and my parents had take photos of his new ‘do; my mom made vegetable soup and paper-wrapped chicken and Charlie played the piano with brio. He said good-bye, went straight to bed on Monday, and woke early on Tuesday, and got himself ready for the bus. His teacher wrote that he was agitated getting off the bus and had one tough moment in the morning, and then was finishing off a great rest of the day when something seized him just as he was to get onto the bus. He sat for almost five minutes in his seat as I stood in the parking lot and then Charlie ran out, visibly unhappy. I followed him into our condo and he sat in the black chair by the window for 45 minutes with shoes and coat on and—I guess the word would be—-moped.

Then he got up and took his lunchbox out of his bookbag, told me what he’d done at school, and went to find his Leapsters in his room.

The rest of the day was properly boring and routine. We went for our usual walk, well-bundled up and with Charlie slushing through piles of leaves, and then to the grocery store. Last week, the store had lost its electricity earlier in the day and had to throw out many refrigerated and frozen items, including Charlie’s latest favorite, vegetarian egg rolls. The bins were properly well-stocked Tuesday afternoon and he filled a basket and contemplated, and ultimately turned down, some hot dogs. We went home, ate, did a homework sheet, and I recorded hic haec hoc.

Charlie was talking in the background of my first attempts. After the second, he started repeating what I’d said (”hic, haec, hoc, huius…….“). When I tried out the podcast I’d uploaded, he came right over to my laptop and stood listening with a smile.

All while saying, hic, haec, hoc, hu……...