I found Jodi Picoult’s passing portrayal of a young man with a developmental disability gratuitous and sloppily drawn. Curtis Sittenfeld, on the other hand, has written movingly (if passingly) of young men with special needs with grace and insight and caring. In “American Wife,” Alice Blackwell (the fictionalized Laura Bush character) sits next to a young man with a disability at a fundraising dinner.

Though I suspect Dale had the intellectual aptitude of a nine- or ten-year-old, I wouldn’t have guessed this if I’d been observing him from any distance–his featurers weren’t irregular, except perhaps that he looked friendlier than most other guests. When it was time to sit for dinner, the men at the table remained standing while I and the other wives found our plates, and Dale, to whom I had been briefly introduced a minute before, plopped next to me in the seat that had a place card for his father; Mrs. Tasker’s place card was one more over.

… Dale said, “My favorite actress is Drew Barrymore, do you know who Drew  Barrymore is?”

Image: CurtisSittenfeld.com

Instead of a few paragraphs, Sittenfeld gives him four and a half pages. If not a relationship, exactly, an affinity between the man and the First Lady springs up during what would otherwise be a stodgy, dull affair. And we learn that his name is Dale; he adores Drew Barrymore movies; enjoys tic-tac-toe (and is pretty good at it); that he is 40 years old and lives with his father; that he is proud of his collection of American aircraft stamps.

At the end of “Man of My Dreams” her protagonist is teaching kids on the spectrum. I can’t quote because I don’t have a copy of the book but I remember it as straightfoward and dignified.

I don’t know what Sittenfeld’s experience with people with disabilities is, or why she seems to have a bit of interest in them, but she does seem to. It’s refreshing to read someone with insight and kindness write about kids with special needs.

We had a moment of amazing family happiness the other night. My younger son, Ned, has been a somewhat reluctant reader. I’m not sure why, because every time he actually sits down to read he has a pretty good time. Recently I invented something called “Family Reading Half-Hour” (Ned’s been told since first grade he’s supposed to read for 20 minutes a day, which he has always found burdensome. So I decided we’d do it with him. It’s no hardship for me and Jeff to sit on our butts and read. In fact, it’s a lot more pleasant than cleaning up after dinner or changing the cat box.)

The three of us started it while Alex was in the bath (I guess because we didn’t think he’d want to do Family Reading) but on Sunday night he joined us. The living room was silent. All screens – TV, iPod, computer – were dark. Alex looked intently through a book about Hanukkah with photographs and a lot of text. Now and then he grabbed my hand to point to something, and we’d read a few words out loud.

We do many things as a family – eat in Chinese restaurants and coffee shops, go on picnics and to amusement parks – but this was, I think, the first time we sat together quietly, enjoying the same thing without Alex deciding he’d rather be somewhere else or eat something else. Alex will sit in a restaurant but he never eats what we’re eating. We felt hopeful for a while about Chinese food but he sort of drifted away from it and now he eats crackers while we eat chow fun.

Of course the chocolate chip cookies (see confession below) I made before we sat down helped – but they were also a distraction for Alex. I think we’ll have family reading tonight and cookies or brownies to follow.

Photo by Kitten Fleming

Say what you like about not using food as a bribe or a reward. Family reading has given me more peace and happiness (and a little space to read) than practically anything I can think of, including Valium. If that doesn’t deserve to be celebrated with a freshly baked brownie, I don’t what does.

Confession: I use the mix in a bag most often. What makes it quite a convincing stand-in for making them from scratch is a tablespoon of vanilla extract, about half a teaspoon of salt, unsalted butter (never margarine) and some ground cinnamon.

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.

An article in the November Journal of the American Medical Association by researchers at the UC Davis M.I.N.D. Institute calls for Fragile X testing throughout the lifespan. The genetic mutation that is linked to Fragile X, fragile X mental retardation 1 (FMR1), also gives rise to a “family of disorders occurring throughout the entire life span, including the most common heritable form of intellectual disability, fragile X syndrome, and premature menopause (primary ovarian insufficiency).” Further mutations of the gene also are the cause of fragile X–associated tremor/ataxia syndrome (FXTAS), which is “one of the most common single-gene, late-onset neurodegenerative disorders.” Researchers note that, while it might be thought that these disorders are rare, such an assumption is “both false and unwise”; mutations of FMR1 can affect people at different times in their lives. Newborn screening for Fragile X is also being considered.

The research was undertaken by Randi J. Hagerman, MD, director of the Fragile X Research and Treatment Center at the M.I.N.D. Institute, and Paul J. Hagerman, MD, PhD, director of the UC Davis NeuroTherapeutics Research Institute (NTRI). As noted in Science Daily:

Abnormalities in the fragile X gene fall into two categories: those caused by the full mutation and those associated with the premutation.

The full mutation involves greater than 200 copies of a three-nucleotide sequence (CGG) in the FMR1 gene found on the X chromosome.Normal individuals typically have fewer than 40 repeats.

The premutation involves 55-200 CGG repeats in this gene. Individuals with the premutation are known as carriers and the children of female carriers are more likely to be born with the full mutation.

30 percent of boys with the FMR1 are diagnosed with autism and Fragile X syndrome is “the most commonly known single-gene cause of autism,” and is linked to between 2 and 6 percent of autism cases.

On life raising a child with Fragile X, Clare Dunsford’s Spelling Love With an X: A Mother, a Son, and the Gene That Binds Them is a must, and a good, read (and one I must recommend to the library, or if you’re in a book-giving mood for holidays.)

Made it through Thanksgiving; did some holiday shopping from the comfort of home (and here’s some gift suggestions); time to get back on the school bus!

• Autism and Schizophrenia: The Same “Disease”?
  According to the latest theory, “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.”
• Girls and Getting a Diagnosis
  Are girls and women sometimes not diagnosed as being on the autism spectrum because they do not have the same symptoms as boys and men do?
• Denis Leary Tries (Tries) to Defend Himself
  Contrary to what he said a few weeks ago, Denis Leary doesn’t seem to be so sorry after all about what he said
• Nicotine Addiction and Autism
  While studying drug abuse and addiction, researchers at the Ohio State University College of Medicine have found a link between nicotine addiction and autism.
• Mandatory Autism Registry in NJ Proposed
  NJ health care professionals will be required to report those diagnosed with autism at any time from the day they were born through their 21st birthday.
• Increased Use of Antipsychotics in Children (and Young Children) Criticized
  More than 389,000 children and teenagers were treated with Risperdal—an atypical antipsychotic—last year. And, 240,000 of them were 12 years old or younger.
• Teacher Suspended For Letting Students Vote Alex Barton Out of Her Class
  Florida teacher Wendy Portillo—who allowed her kindergarten class to vote on whether or not their classmate Alex Barton could remain in class—-has been suspended without pay for a year.
• Off to the IACC
  I attend a meeting of attend a meeting of the Interagency Autism Coordinating Committee, which coordinates efforts concerning autism within the US Department of Health and Human Research.
• A Wish To Be in the Brownies
  In Wisconsin, after one visit to Girl Scout Brownie troop for girls with special needs in Oconomowoc, the troop’s leaders told 8-year-old Magi Klages’ parents not to bring her back.
• Looking For Autism’s Causes At Home
  MARBLES stands for Markers of Autism Risk in Babies—Learning Early Signs and investigates “biological and environmental triggers that children are exposed to prenatally and post-partum.”
• Refrigerator Mothers, Warrior Mothers: One and the Same?
  Is the “warrior mother” not—as proclaimed in the Warrior Mothers book put together by Jenny McCarthy—the opposite of the “refrigerator mother” of the previous generation, but rather her “distorted mirror image”?
• 28-year-old woman’s death under investigation
  The pressing, pressing, pressing need for staff with appropriate training, for facilities, and for much much more was more than made apparent at the IACC—the November 10th death of 28-year-old Tara O’Leary highlights just how pressing these needs are.
• Something Else to Be Thankful For
  I’m thankful everyday to be Charlie’s mother.
• What’s In Your Library?
  What books about autism are in your library?
• Measles Aren’t Going Away, They’re On the Rise
  1049 cases of measles have been reported in England and Wales so far this year, the highest number in 13 years and exceeding the number on 2007, when there were 990 case

Did Thanksgiving and now full speed ahead into December with all of its festivities, plus a few extras. Today is “Black Friday” here in the US, formerly known as “the day after Thanksgiving when people line up at 5am to charge the stores to get super-special-deal-discounts on holiday purchases”—as you probably guessed, we didn’t hit any malls with Charlie in tow. He has a general aversion to shopping for clothes, electronics, and anything in the closed confines of the modern mall. Once upon a time, we went to malls with pretty much the sole intent of walking around for exercise on a cold winter day, with the promise of escalator and elevator rides. Charlie’s interest—desire—to ride the likes of those has waned (and, too, some rather painful memories of dragging a very unhappy boy away from the down escalator, which he wanted to go up on).

Fortunately, there’s cyber-shopping, and no need to drag Charlie on any shopping expeditions. A lot of the bloggers at b5media have put together gift guides and I’ve included the list at the end of this post (just click where it says “read more”). I haven’t put together a guide of “stuff” that’s appealed to Charlie (and that he’s actually liked and used……) but I might, could, if anyone’s interested………. here is one suggestion:

Can I Sit With You Too? is the second collection of stories from the Can I Sit With You? project, which gathers together tales from the “stormy social seas of the schoolyard.” Here’s the book blurb:

These new tales represent an even wider range of schoolyard experiences, including best friend disappointments, new kid fears, harsh discrimination, living with disabilities, and emerging sexuality. By sharing moments from kindergarten through high school, these stories once again remind us that we are not alone: chances are, if it happened to you, it happened to someone else, too. The Can I Sit With You? project has been featured on NPR, and in live shows and readings from Seattle’s Annex Theatre to the San Francisco Bay Area’s Book Passage. Proceeds from this book benefit SEPTAR, the Special Education PTA that Jennifer Byde Myers and Shannon Des Roches Rosa helped found in 2007.

As related, we had an incredibly quiet Thanksgiving with just the three of us. We used to go to the club where Jim’s aunt, Aunt Joan, was a member; she passed away, very suddenly, last June; she was happy, well-loved, liked, and regarded, and she’s more than missed. Thanksgiving at that club would not be the same without her ushering us in and sitting down with some white wine beside her husband.

The club was a challenging place for Charlie to be; he had to get all dressed up and after he ate, there was never much for him to do (or, rather, never much that would have been considered “appropriate” for him to do), and his whole day would be thrown off because of eating “dinner” at 3 o’clock in the afternoon. People—and no one more than Jim’s aunt, whose oldest son is severely disabled—were understanding but I guess difficult, awkward moments in social settings still feel, well, difficult and awkward.

Shannon Des Roches Rosa recently posted about helping peers understand our kids’ social challenges and some of what she notes might be helpful to mention to others—relatives, family friends—too, especially at a time of year when there tend to be more social gatherings, parties, and other “holiday cheer” (that often doesn’t feel so cheerful). I’ll just quote some bullet points from the post:

• Don’t to give up on [kids with social challenges]
• Don’t ignore them
• Make them listen to you sometimes!

I’d also suggest, we should listen to kids and those with social challenges all the time, however they’re communicating, with words and without.

And in regard to holiday gifts—just today I found and carefully refolded the silk Christmas tree scarf Aunt Joan gave me in a drawer, and thank her always for some very wonderful memories.

Read more

Among the books about autism at the public library in our town are this, this, and this—I’ve put in requests for a few other things.

To be very honest, we rarely visit our library. While there’s no lack for books of every sort at our house, Charlie’s not a reader. I was interested to read about a program called Project Inclusion, which is described in the November 26th Wausau Daily Herald (Wisconsin):

Project Inclusion’s overall goal is for the participating libraries to “take a proactive stance to address the literacy needs of children with disabilities and to make libraries meaningful and welcoming places for these children and their families.” Special emphasis was placed on adding materials especially for and about children on the autism spectrum.

These materials include a book called My Best Friend Will by fifth-grader Jamie Lowell and teacher Tara Tuchel; it’s about Jamie’s friendship with Will, who’s autistic and who she’s known since kindergarten. Other materials include DVDs like Know the Code and Skill Building Buddies; Emotes! a new book series designed to help children process and understand their emotions with Manga-style graphics; books from the publisher Orca and also a series called Steady Readers; and visual timers (perhaps like some of these?).

Which leads me to the question—what autism books are on the shelves of your library? Or what books would you like to see?

Is the “warrior mother” not—as proclaimed in the Warrior Mothers book put together by Jenny McCarthy—the opposite of the “refrigerator mother” of the previous generation, but rather her “distorted mirror image”? So argues Dr. Michael Fitzpatrick, author of another new book, Defeating Autism: A Damaging Delusion, argues in yesterday’s Spiked. As Fitzpatrick writes in his essay, The ghost of the ‘refrigerator mother’,

The ‘warrior mom’ is yet another reflection of the culture of mother-blaming and a manifestation of the burden of guilt carried by parents as a result of the influence of pseudoscientific speculations about the causes of autism……
…….
A number of common themes link McCarthy’s ‘warrior moms’ with the spectre of the ‘refrigerator mother’ popularised by the child psychotherapist and author Bruno Bettelheim and others in the 1950s and 1960s. First, there is a common belief that autism has some environmental cause. Then it was toxic parents; today it is alleged environmental toxins (such as vaccines containing traces of mercury or MMR) to which parents have exposed their children. These theories also have the common features that they are entirely speculative and lacking in scientific support.

Second, both concepts are linked to ‘conversion narratives’, quasi-religious experiences of personal transformation or redemption with deep roots in evangelical Christianity (see James T Fisher’s piece ‘No Search, No Subject? Autism and the American Conversion Narrative’, in Mark Osteen’s collection of essays, Autism and Representation). Then, cure was achieved through the intervention of a charismatic psychotherapist. Today, recovery is also the result of the ministry of another charismatic therapist, in the form of a DAN! practitioner prescribing biomedical therapies.

What links warrior mother and refrigerator mother is “feelings of guilt, anger and blame.” Besides the essay by Fisher (regularly referred to on this blog as Jim, my husband and a cultural historian in New York), Fitzpatrick also refers to another essay in Osteen’s collection, by University of Leeds professor Stuart Murray. Murray has written about the representation, and misrepresentation of autism, in contemporary culture in a recently published book. As Fitzpatrick notes:

Reflecting on the ‘outlandish, offensive misrepresentation of autism’ in Bruce Beresford’s Silent Fall and other films, Murray concludes that ‘overall, it is debatable how much progress has been made in cinematic depictions of autism since the foundational success of Rain Man’.

For Murray, there is a danger that ‘autism as metaphor’ floats free from the condition itself and the concept becomes so diffuse as to be meaningless. He links this metaphoric inflation of autism to the quest for environmental causes and the popular resonance of speculative notions such as that of an autism epidemic attributable to vaccines: ‘Possibly what unites all these scenarios is an idea of toxins, of the problem being some form of poison, be it physical and somatic or environmental.’ As he presciently observes, ‘at times, we seem to worry that we cause autism by living the wrong way’.

That we cause autism by living the wrong way. Is this sentiment not floating in the thoughts of parents who demand their right to choose vaccination for their children or not? Behind the green “Too Good” line of household cleaning products etc. that McCarthy has announced she is launching? Once, parents (and mothers in particular) were blamed for causing autism in their children because they (it was claimed) withheld their emotions from their children and in effect starved them of the opportunity for emotional attachment and development. Now, parents rather clamor to withhold vaccines from their children, in the misguided belief that doing so is for the sake and safety of their children; that they can do nothing less than to protect their children from the dreaded toxins in the environment—-the environment not being the emotionally frigid home environment caused by Bettelheim’s bad mothers, but the environment “out there” of polluted, woefully de-greened rocks and stones and trees?

By this account, McCarthy’s self-proclaimed transformation from MTV-starlet into anti-MMR/mercury/etc. advocate—a veritable “mission from God” as she herself has said—is not simply superficial, but “quasi” all the way. It’s a quasi-religious conversion, and, too, a quasi-conversion that still features reports of a stripper, er, autism pole and some reordering of the facts to allow for a proper Hollywoodish ending. In Jenny McCarthy’s book(s), her child has to “recover” from autism. Otherwise, she wouldn’t have a book.

Or, she might have to end her book with the kind of endings noted in another book that Fitzpatrick cites, Families of Adults with Autism: Stories and Advice for the Next Generation. As he notes,

A striking contrast is immediately apparent between these stories and those in the Warrior Mothers collection: whereas McCarthy focuses on tales of ‘recovery’ in young children, none of the accounts in Families of Adults with Autism tells of a diagnosis of autism ‘lost’ or withdrawn. Indeed, none of these adults is living independently and some accounts describe major enduring problems of self-injury or other challenging behaviours. This may be a result of selection – these stories largely come from parents of adults with high levels of need. It may also be a result of the inaccurate reporting of ‘recovery’ in the McCarthy cases. It is also striking that, although many of the contributors pay tribute to Rimland’s role as a campaigner, few give more than a token acknowledgement to the benefits of his biomedical treatments (such as Vitamin B6 and Magnesium, Dimethylglycine and Secretin) and none claims that such interventions have resulted in ‘recovery’.

All this is all the more notable because one of the editors of Families of Adults with Autism: Stories and Advice for the Next Generation is Jane Johnson, the Executive Director of Defeat Autism Now. She writes on the Defeat Autism Now website:

…..thanks to the insights and tenacity of the parents, and the determination, professionalism, and open-mindedness of our researchers and clinicians, we can say unequivocally at every Defeat Autism Now!® Conference: Autism is Treatable. Recovery is Possible! We know this to be true.

That “autism is treatable,” that “recovery is possible”: These are strong and fervently held beliefs by some practitioners and parents who, like McCarthy, have turned the story of their autistic child into a personal narrative of self-redemption. So long as the story of autism is told through the eyes of a parent in need of a conversion—of saving herself as much and even more than saving her child—so will the “ghost of the refrigerator mother” still haunt, and no “angry mob” of warrior moms will quite be able to banish her away.

Parents are making things happen educationally

writes New Zealand journalist David Cohen today in the Guardian’s Mortarboard blog. Cohen’s son Eliot is autistic and he’s the author of A Perfect World. Cohen writes about how around the world—New Zealand, Britain, Israel, South Korea and the United States—parents have been hard at work trying to figure out how to provide the most appropriate education for their children possible. He speaks of parents as an “educational infantry” and I’d add that, truly, I’m just the support staff doing my best to help my son do the best he can every day.

Onward, yes.

The Today Show website has posted an excerpt from the beginning of Dr. Paul Offit’s Autism False Prophets: Bad Science, Risky Medicine, and the Search for a Cure.

At the Parengs Bloggers Network, some parents describe a “feeling of betrayal” in regard to the “overwhelming fears and sadness surrounding autism and the still hotly-debated autism-vaccine link” discussed in Dr. Offit’s book. Excerpts from some parents’ reviews of the book are here

And if you’re watching the Today Show in the 8:00 half-hour tomorrow (Thursday, October 30th) morning, there’s a segment on vaccines and autism. I was interviewed for it, and I think there should be some footage of a certain boy riding his bike.