Seems likes CNN is running a three-day series under the name of “Autism 911,” in which they’re focusing on a California family, the Bilsons, whose middle child, 13-year-old Marissa, is autistic and has tantrums that are “off the charts and seemingly unwarranted.” In “Supernanny” fashion, an autism consultant from an ABA provider, Autism Partnership, has been called in and, it seems, the CNN show will see if it’s possible to “[rein] in” Marissa’s behavior.

Since she’s 13, I’m wondering if she’s entering, or isin the midst of, puberty? As noted, adolescence and the hormonal and other changes has made this school year—already challenging as Charlie started middle school—-even more, well, challenging.

And then there’s this quasi-sensationalistic statement on the CNN piece:

….many of us have never seen autism in action……

The statement’s said following Mary Bilton’s uncertainty about what to do, but it seems rather presumptive, as if most people have never seen anyone with autism (with the 1 in 150 prevalence rate for children, most people probably have met someone with autism, whether they know it or not) and as if “autism in action” is equal to tantrums (talk about a limited view of autism). A state from the co-director of Autism Partnership, Dr. Ron Leaf, says something more hopeful and, I’d say, accurate:

The one thing that Leaf believes they all have in common is that “[autistic persons] are not expected to do enough.” Leaf insists we have set the bar too low for what we think children and adults with autism can do.

You can say that again—-presume competence and it’s onward and upward; assume “he can’t do that”—-we can’t do that, for Marissa Bilton, for any child.

I grow old … I grow old …
I shall wear the bottoms of my trousers rolled.

I write fairly frequently here about Charlie growing up. Of course, he’s not the only one around here getting older: It’s my birthday today, and I’m 40.

Fout-ohmygod, as one my mom-blog-friend puts it. Like the narrator in T.S. Eliot’s poem, I grow old, I do grow old, and I actually do roll the bottoms of my trousers (ok, pants), because I’m too lazy to get out a needle and thread and hem them.

My mother did teach me to hem, years ago, and it really is years ago, due to this birthday thing. She taught us the basics; I think my first “creation” was a pocket made of fabric from the scraps of the Halloween costumes and jumpers and curtains and pillows she used to make. She put together a sewing box for my sister and me and I remember trailing behind the two of them as we wandered the rows in the fabric store. I loved seeing all the prints and patterns and colors and running my hands over the bolts of material, and always had to steal a long look at what I thought was an infinite array of buttons, snaps, rickrack, ribbon, and “notions.” When I was around 7 or 8 and my sister, sewing boxes in had, took the AC Transit bus to the big town a couple miles away (we were living in what was then a very brand new suburb) and took lessons at a Singer sewing store. I was mildly terrified of the needle on the machine going through my finger and didn’t advance beyond making an awkward wrap skirt from a Simplicity pattern.

The reason we were taking AC Transit to the sewing lesson was that my mother had gone back to work and it was just my sister and me for many hours in the long, hot summer days. The once a week sewing class broke up the time (most of which we spent, quite contentedly, reading books). A year later, we moved back to Oakland, where my father’s family is from (and where he, my sister, and I were born). The sewing machine, cover clipped securely on, sat in a corner of the downstairs room where my dad had his desk, or in an unfinished storage area.

My mother also used to needlepoint and my sister took this up, and still does (the green dragon under the words “Charlie’s room” still hangs on a wall by his’s window). I didn’t think about sewing till I was in graduate school and on my own, and, finding that I really didn’t want to have to roll up the bottoms of my pants, I asked my mom to teach me how to hem, again. I did a few pairs of pants with her, yes, “helping” to even things up—-ok, sometimes my mom, who is just a bit shorter than me, would just pin up the pants, pack them up in her luggage, hem them at home in California, and send them back to me. I probably got more care packages while I was in grad school and living in my own place than when I was in a dorm in college, and felt a bit ridiculous when finding myself really looking forward to see what kind of cookies she’d saran-wrapped in pairs.

So much for me “growing up” and being “independent.”

These days, she still sends the packages (my dad was quite thrilled to discover those flat-rate shipping postage boxes). Now there’s stuff for three and, in the latest sent two weeks ago, two pairs of pants, carefully hemmed, for Charlie, who seems to have reached a stage of his life when pants grow shorter overnight and when he and Jim can pretty much share t-shirts and socks. (And when the three of us were briefly confused the other day about whose black suede slip-on shoes were whose; Jim’s appeared only slightly bigger than Charlie’s.) I not only still don’t hem pants, but work is very busy, and taking care of Charlie, and talking and thinking through things with Jim, and everything …..

But I know I could hem pants if I had to. I still have a sewing box outfitted with needles of different sizes and different colors of thread and scissors and a thimble (though I did misplace the box for awhile in one of our moves). I don’t have to roll up the bottoms of every pair of pants, having finally found some that more or less are the right length, but I like knowing that I could if I had to. In the occasional times when I’ve sewed a button that fell off a sweater or one of Jim’s shirts, or tried to patch the lining of my coat pockets, I’ve found the activity of sewing—making the knot in the thread and moving the needle and thread in and out and in and out—focusing and, while not exactly relaxing, soothing in the repetition.

And then, my wardrobe has of late been a bit over-supplied in khaki and ripstop pants and jeans, some with elastic waists: The pants Charlie was wearing last year are pretty much the right length for me.

40 years old, and wearing hand-me-ups from a not-yet-adolescent boy.

Such are life’s lessons when you know you’re older, and you’re trying, very hard, to be just a bit wiser, especially when you know you get to spend the years to come (40, 41, and counting) with your two very, very best friends.

(But how long will Jim have a few inches on Charlie—there will be time, there will be time.)

Lately hormones have been on my mind a lot. “It’s those hormones,” someone seems to say at least once a day in reference to Charlie. Not only has he grown some six inches this year (that’s what Jim and I have been estimating). Physically, he is really growing up: For the past few weeks, it’s become very apparent that his voice is changing (though I still hear, mixed in with new, lower tone, the familiar light voice that is Charlie’s). At times his moods seem to change in a split second or less. I’ve been remembering back to my own adolescence and to how waves of feelings seemed to arise in me with no warning, and how these weren’t always expressed in the best of ways, as I didn’t know how to express what I was experiencing—–and if that’s what Charlie is feeling, it’s compounded by his minimal language, and especially language to describe feelings; to communicate.

It’s the hormone—or rather, a hormone—that some are pointing to as providing a way to enhance and even improve social ability in autistic persons. The hormone oxytocin is referred to both as the “trust” hormone, as it plays a role in bonding between parents and babies and between adults. It’s also called the “love” hormone, and seems to play a role in social and repetitive behaviors. The November 29th Australian reports on oxytocin as a treatment of potential promise:

….research, funded by the federal Government’s National Health and Medical Research Council to the tune of $180,000 over two years, is testing the ability of a naturally-occurring human hormone, oxytocin, to improve the ability of people with autism to recognise and react to emotions and to interact socially.

Currently, there are no effective treatments that directly tackle the complex and still mysterious disorder, although various drugs (such as antidepressants) and behavioural therapies are available to ameliorate its symptoms.

40 males aged 12-20 with an autistic disorder are being recruited; they will be given a nasal spray to use at home (This mother tried the nasal spray for her 21-year-old son with Asperger’s, with these not expected results.)

Stewart Einfeld, co-director of Centre for Autism Research, Education and Service (CARES), is quoted as saying:

“It’s one thing to say that the capacity to understand emotions is improved in an experimental setting…….It’s another thing to say that as a consequence, they are functioning better and are able to get better jobs or are living more independently. You can’t be predicting too many long-term benefits until you have done the work.”

If I may say so, regardless of whether or not “it’s those hormones,” love and trust—-love for Charlie, the love among him and Jim and me, and the trust (and faith) that we have in him and hope he has in us: These have had plenty of benefits (and more) for Charlie, and for us.

h/t to Kathy!

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.

Saying “a lot happened” in the past two weeks kind of seems like an understatement.

• The Search for Certainty (or, why we’re going to the dentist at 3.15pm)
  An emergency dentist visit for Charlie prompts me to think about why parents so often try to find medical reasons for why something’s going on.
• David Kirby exonerates thimerosal
  Maybe not exactly but the day may be coming……
• Today Show Today on Autism and Vaccines
  I’m briefly interviewed on a feature about vaccines and Dr. Paul Offit.
• A “Crusade Against Autism”—-To What End?
  Do we really need such a “crusade”? . Michael Fitzpatrick (who’s the parent of an autistic child) writes about how such a “crusade” does more harm than good.
• The Great Now What
  Though parents of just-diagnosed children often feel so confused and uncertain, Early Intervention and preschool services and programs are (here in New Jersey, at least) in place. After that, it always seems to be “the great now what” all over again.
• Positively Autistic on CBC News
  A recent CBC News special feature, Positively Autistic, says that “since the early 90’s, an autistic rights movement has sprung up, challenging the official view of autism and working to change how the world sees autism.”
• If It’s Raining, There’s More Autism?
  Another study from Michael Waldman, who wrote an earlier paper about TV causing autism.
• Pop Pop Redux
  A post about the Mugen Pop Pop Blueberry written on Election Night,
• What does it mean to lose an autism diagnosis?
  Does losing a diagnosis mean that one is “cured” of autism?
• Sensory Differences: Research at IMFAR 2008
  Should sensory processing differences be part of the criteria for autism?
• Robert Kennedy, Jr., and the EPA?
  RFK Jr. is under consideration by President-Elect Barack Obama to head the EPA?—Not good if you care about science.
• “Strange” Play As a Marker for Autism in Infants?
  Unusual use of toys in infancy a clue to later autism, according to a stuy published in the October issue of Autism, the journal of the National Autistic Society.
• Adolescence: Not easy, but no need to end it
  Newt Gingrich argues that we should do away with adolescence.
• New Theory About Autism and Genetics
  A new theory argues that arents’ genes are “in competition.”
• Over-diagnosis? Misdiagnosis? Or Just Better Diagnosis?
  Rod Welford, the education minister of Queensland (Australia), attributes the rise in autism prevalence in his state to parents in search of more services for their children—-not.
• Looks Like the Special Needs Mommy Wars Aren’t Over
  is Sarah Palin a potential leader for working mothers of special needs children?
• The Value of Money (the real stuff)
  Charlie learns to count money in the age of the ATM card.

Let’s End Adolescence writes Newt Gingrich in the October 30th Business Week. Adolecense, argues Gingrich, is a 19th century invention and, indeed, a “social experiment” that has largely failed. Why keep supporting a “system for delaying adulthood and trapping young people into wasting years of their lives”? Why not skip the whole notion of some kind of transition stage between childhood and young adulthood and stop (as Gingrich seems to suggest)  delaying the inevitability of adulthood, and have kids “shift to serious work, learning, and responsibility at age 13 instead of age 30″?

Well, Newt, let me tell you something.

At 11 1/2, my son Charlie’s definitely in the throes of adolescence. Almost all the clothes he wore last summer have either gone into the Goodwill pile, or been hand-me-upped to my drawers and (you’re gonna gasp) Jim’s. Every night when I look at the reflection of Charlie and me in the bathroom mirror as he’s brushing his teeth, he seems taller than the week before (the day before?). Jim’s been using the electric shaver on Charlie’s upper lip and, as noted before, the hormonal thing has hit big time. We had dinner last night with friends whose baby isn’t even 6 months old: Needless to say, a lot of memories were stirred up of what it was like to hold a long-limbed big-head boy in the crook of my left arm. Now he’s the one looking down at me.

I’m not sure adolescence can be done away with—-it’s part of the process of growing up. Gingrich proposes having children (I guess he wouldn’t say “adolescents” since he’s calling for the end of such a notion) start job-training earlier and start taking on the professional and financial responsibilities involved. But there’s a reason for “adolescence,” for extending childhood or (if you want to think of it this way) delaying adulthood.

Charlie, not even in his teenage years, just having started middle school, and the youngest in his middle school classroom, has already started pre-vocational training. Folding laundry, cooking, food prep, vacuuming—-these are “life skills” on his IEP, but they also fall under the “pre-voc” category. We continue to teach him writing, reading, simple arithmetic; we often have to really emphasize how he needs to keep studying these things: Because everything about Charlie’s learning has to, already, be “functional.”

The purpose of Charlie’s education doesn’t have to automatically be to teach him to “get a job” and “use his skills.” I continue to teach him cello and piano. Just as much as any child, Charlie needs to have all areas of his education addressed and not only those that are “functional.” For a child like Charlie—whose academic program is far different from that of his peers and who’s going to be in special education for the rest of his schooling—-there’s just as much a need to develop his abilities and his interests and to expose to the arts, to music; to provide him with what you could call as much of a liberal arts education as possible. It’s music and sports that play a role in helping Charlie to allay some of his anxieties, do something he’s good at, and develop interests that could potentially be lifelong. Sure Charlie needs to learn skills for a job that will drawn on his abilities, like that of 22-year-old Andrew Janusz, but work is one part of the big picture.

When the talk turns too much to teaching Charlie “pro-voc” skills and our requests for music lessons are greeted with “oh sure” and bland nods and suppressed rollings-of-eyes, I hear the voice of “hurry hurry hurry.” Adolescence is not turning out to be the easiest of times for Charlie, who I suspect must often be feeling like the same kid he’s always been, but in a body that’s becoming an adult’s. Charlie needs time to grow up. It’s taken him longer than most kids to learn to do so much, why push him (not to mention other children) ahead so fast? What’s the rush?

Just extremely really tired.

A phrase like this has often come to mind about Charlie in the past few weeks and it’s been used on and off by Charlie’s teacher in her emails home. Thursday he was groggy all day. When he comes home from school he walks straight to the refrigerator, eats a plentiful snack, and then just curls up on his couch chair with some fleece blankets and all but falls asleep. He’s been accommodating himself really well to having to get up much earlier to get on the bus by 7.30am and sometimes earlier. I’ve been trying to get him to go to bed earlier, but 9.30 is pretty much the earliest that Charlie seems able to go to sleep (and maybe I’ve still some very strong memories of when Charlie used to fall asleep at midnight regularly—-9.30 still seems early!).

Charlie’s teacher suggested that he might be in the midst of a growth spurt and just really, physically tired. This sounds very plausible and just today Jim noted that he realized that the day when he sees eye to eye with Charlie may be here sooner rather than later. (Charlie started to look eye to eye with me about three years ago.) Rushing to grab a pair of socks for Charlie as he pulled on his clothes, I found myself digging through his sock box to find a pair that would fit. Am I some negligent mom, or did it seem that almost every pair of socks looked like it might have fit Charlie about two years ago? Fortunately, my mom had sent a couple of pairs of new socks the day before and I slipped an extra pair into the front pocket of Charlie’s bookbag, as it was raining heavily this morning.

Charlie knows now to avoid puddles and this is yet another sign of how he’s growing up, understanding more, and thinking about consequences (if I step in all those puddles, I will have wet shoes and feet for the rest of the day). We’ve also noticed frequent mercurial mood changes in Charlie, who’ll be at ease and smiling one moment and then howling in high-pitched anxiety and distress for a half-hour a moment later. Such sudden mood shifts have occurred on and off throughout Charlie’s life, but they seem to be occurring (much) more frequently of late and, more and more, Jim and I have been saying—when we’ve run through list of other explanations (changes in the weather and the barometric pressure, a portending stomach ache, being tired, someone leaving, not getting a bottle of ketchup at the grocery store……), we’ve been saying, Puberty.

And recalling the not fun-ness of our own adolescences—a word which brings to mind the beige and brown buildings of my junior high in Oakland, California—I feel hardly surprised that Charlie is on and off and often out of sorts and on the edge. I could try to talk about what bothering me; Charlie’s spoken vocabulary does not include such expressions.

And so “the adolescence factor” seems to have become the new reigning phrase in our household to explain tense, tough moments. When I see my gangly-limbed boy (crossing one leg over the other) or Jim gets out the electric shaver, surely those internal, major changes inside of him must be struggling to be expressed, described, just noted?

When Charlie was a toddler, thinking about adolescence just seemed inconceivable. But it’s here for him and for us as his parents and often I feel we’ve begun a new dance, have to get in step and figure out the new steps and rhythms and figure out where he’s leading us. “It’s adolescence”: I suspect I’ll be referring to this for some time now and when I’m done, I suppose I’ll find myself in the teenage-hood.

Eat your breakfast and (if you’re an adolescent) you’re less likely to become overweight, according to a recent study in Pediatrics (March 2008) of adolescents from Minneapolis-St. Paul public schools (here’s a write-up in the New York Times, too.) Charlie definitely eats, and definitely needs, his breakfast—but he’s never ready to eat it before getting on the bus. He just does not seem inclined to eat on first waking up (well, I’m not either, though I need my coffee). I used to struggle to get him to eat something, and found myself picking up lots of waffle pieces and bits of cereal from the floor of my kitchen or car.

Just over a year ago, Charlie’s then-teacher—noting that he had started to ask for lunch around 10 o’clock and ate ravenously—-asked if we could send in breakfast. “He can eat it when he comes in to the classroom,” she said, very matter-of-factly. And that’s what Charlie has been doing ever since (and the middle school teacher has noted that this is fine with her). Everyone agreed that it was surely better for Charlie to start school with something in his stomach when he was ready to eat it, rather than insisting that he stick it out until lunchtime—-a small accommodation.

As they say, a good breakfast is the start to a good day.

A post here on adult sexuality in autistic individuals led to a very interesting exchange, including critique of the survey itself. The survey is being conducted by the North Shore Long Island Jewish Health System is and the University of New Brunswick and the researchers have sent me a response (see below, after the jump).

Being the mother of a 10 year, 10 month old son who (as I’ve noted) has started a moustache —-puberty is right around the corner—-I very much value the findings of the research and, too, discussion of this topic among readers. If you review the “Ashley treatment“—which involved the removal of her uterus and breast buds, so that she will not start to menstruate and will also be “kept small,” Ashley growing up and into adulthood was, it seems, a foremost concern for her parents. The issue of sexuality in individuals who are cognitively disabled is a huge topic that I certainly have just started to think about and rather than just take a “wait and see” approach, it’s important to me to learn as much as possible, and to keep dialogue going.

Here is the response from the researchers of the study on sexuality in autistic individuals: Read more

The North Shore Long Island Jewish Health System is doing a joint project with the University of New Brunswick on Adult Sexuality for individuals between 21 and 65 who fall into the Autism Spectrum. Individuals can participate in the study via a confidential online survey. Here is some more information:

The purpose of this study is to better understand sexuality and relationships of adults with high-functioning autism spectrum disorders (ASDs). The information collected from the study may increase knowledge of how best to help teens and adults with ASDs experience healthy sexual development.

Participation in this study involves completion of a set of online questionnaires at www.unbstudy.com that will take between 45 minutes and 1¼ hours to complete.

For more information about this project, please contact Shana Nichols, Ph.D., Psychologist or Sandra Byers, Ph.D., Psychologist.

My son will be eleven in May and sexuality is a topic that I’ve only begun to think about and it would be helpful to learn more about this not only from professionals, but from autistic individuals themselves (keeping in mind that this is a highly personal topic). I’ve heard about mood swings and an increase inseizures during puberty and hope to find out more, so that we can keep doing our best for Charlie.