I was speaking last night to the director of the new YAI Autism Center, for which I’ve written two blogs. “Beautifully written,” the good doctor said of them, so naturally I thought he was a pretty sharp guy.

“I’m curious to see how the blog will develop,” he continued. “It seems that often when a center like ours has a blog, it finds itself having to take some stand. I was wondering what your views are?”

Oh. In the whole cause-of-autism thing? Yes.

I have no stand.  I usually answer that better minds than mine are working on this. Premature birth? Vaccines? Phases of the moon? All are good candidates. I’ve read up on the vaccine/mercury versus non-vaccine/mercury debate, most recently in Autism’s False Prophets, and I haven’t settled on either side. I am certain, however, that something’s responsible for Alex still liking “Elmo” and “Dragon Tales” at nearly age 11.

So I dredged what I could recall from Alex’s vaccination schedule from back when Bill Clinton was still president and Godzilla was the hot summer movie, but honestly, when your first baby lives in a plastic box and you must leave him in a hospital night after night and you still have what will be a full year ahead of you of more of the same, the shot slate doesn’t stick in your mind — especially if it’ll be a long time before you realize that slate’s potential importance.

I do know what side I fall on in the debate: on the side of not believing you have a lock on the whole truth, and not on the side of making death threats to those who publicly oppose your views. The unending ability of people in a terrifying situation to fragment, takes your breath away.

The doctor talked to me about the latest research and I agreed it sounded promising, and I assured him that if he stumbled across a cure I’d be one of the first in line. But, last I leaned on the crutch of the Layman Parent Writer:

“My opinion,” I said, ”is that I fear for Alex’s adulthood.” That certainly seemed to be something we agreed on.

***

Visit YAI’s Autism Center Community here.

“Toddler Brain Difference Linked to Autism,” from CNN.

Researchers find first common autism gene, from Reuters.

(Image: taoism.about.com)

Next week Jeff and I are planning to catch a few movies at the Sprout Film Festival, an annual showing of movies portraying people with developmental disabilities. “People with developmental disabilities as subjects and performers remain marginalized in film and television,” the organizers believe. “This festival aims to raise their profile by showcasing works related to this population.”

Last year I gave a talk about portrayals of people with developmental disabilities in mainstream Hollywood movies (”Rain Man,” “Pumpkin,” “What’s Eating Gilbert Grape?,” “I am Sam” — I have a very long list) and how they mostly don’t get it. One movie I haven’t seen but which I think is smart and sensitive  is being shown at Sprout this year, which is unusual since they mostly show documentaries or feature films made by people with disabilities.

“The Eighth Day” stars Pascal Duquenne, a Belgian actor with Down Syndrome.

*    *    *

Through Chun Wong I found out that AMC has paired with Autism Society of America to present monthly viewings of movies for families with special needs kids. I love this idea. We’ve taken Alex to a couple of movies (not his favorite form of entertainment since theyrequire a) sitting still and b) enjoying something new) and it was sort of OK. His teacher has been more successful mostly because Alex doesn’t put on the same show for her benefit that he puts on for us.

In addition to the $6 ticket price the movies are usually at 10 in the morning, a perfect time to enjoy a children’s movie and not spend your whole day doing it. Besides, I don’t care if it’s going to be stupid. I want to see Night at the Museum 2.

*    *    *

Every now and then I dream Alex can talk. Really talk. We have a conversation; he tells me how he’s feeling. I never really remember what we talk about. Only that we talk. And that in the dream I’m aware of a feeling of a deep relief. Thank god. That long period of not communicating is over.

Apparently I’m not the only one who has that dream. These are the comments of other parents on Cafemom who also have it. I feel bad complaining sometimes, because another thread talked about what you wished your child could say. Many moms longed to hear “I love you” and “Mommy” and “Mama.” I’ve heard all those, and they were thrilling. I just wish Alex could tell me what he’s thinking now and then.

Image: Amazon

I’ve often wondered what I can do. Organizations walk, give concerts, golf, and do any number of other activities during Autism Awareness Day. Unlike too many observances, the event seems sincerely devoid of commercial possibilities (as a friend said to me last April, “I searched and searched for a Happy Autism Awareness Day card for you, but couldn’t find one…”). So I’d like to do something real, though maybe on a smaller and more immediate scale than a walk to a rock concert, to start.

“What are you doing to promote Autism Awareness Day?” was the question posed on LinkedIn’s Autism Awareness Group earlier this week, and several responses offered food for thought:

One busy LinkedIner specifically shopped at a grocery store chain after spotting store associates wearing the puzzle pin.

Another woman handed out awareness fliers to pediatricians and pediatric dentists in her area, and placed an awareness poster in her husband’s dental practice, along with fliers informing people that she’d speak for free to any groups who want more information about autism.

“We posted information on our website for all school employees,” said a director of sped in one Virginia school district. One advocate overseas added the World Autism Day logo to their website (www.actiebijautisms.nl), and planned to host a seminar for local autism professionals and academics to discuss ABA in the Netherlands.

From a parent in Great Britain: “The day was great but I was quite fed up with how little mainstream TV coverage the day got in the U.K. I was using Twitter to try and get people to go through to the World Autism Awareness Day website and to the National Autistic Society website in the U.K.” Smashing!

One woman brought in bagels and cream cheese for her office. “It had promient placement in the kitchen, with an autism puzzle poster and notification of World Autism Awareness Day, and a few facts and figures about Autism. It created some good discussion.”

Had her co-workers any questions about autism?

” ‘Why is autism increasing?’” she answered. “Many had heard that vaccinations were a cause. I shared some facts and current thought, and also discussed current legislation on private insurance coverage of autism therapy in eight states.

Most I spoke with were incredulous about autism therapies not being covered by private health insurance.”

News stories on other programs for Awareness Day:

California Association Of Health Plans Recognizes World Autism Awareness Day By Highlighting Medical Services Plans

Provide http://www.medicalnewstoday.com/articles/144873.php

Elementary school makes Awareness pins: http://wfmz.com/view/?id=720846

Toy retailer sponsors walks and promotes toys that “speak to autism, and helps children develop certain skills”:

http://www.nbc40.net/view_story.php?id=8762

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.

Discussion was dominated by two stories, that of 13-year-old Adam Race, against whose parents a priest filed a restraining order, and of 5-year-old Alex Barton, who was voted out of his kindergarden class by his classmates, at the suggestion of his teacher, Wendy Portillo. These two incidents sparked some very heated and often acrimonious exchanges and remind me of why there’s a need to think about autistic persons and the community, in faith communities and all others.

Also: It was reported that there had been 72 cases of measles so far in the US, the highest number since 2001—-and the number would only go up, while misinformation about vaccines continued.

Sometimes it seems that everything, if not anything, could be said to cause autism (and that everything, and anything, has been offered as a “potential treatment for autism”). New tests to detect signs of autism in younger and younger children and, indeed, in babies were reported.

A New Yorker article on neurodiversity provided a simple answer to the question of where are the autistic adults?

And in May of the year when I started learning more and more about employment and housing for autistic adults, Charlie celebrated his 11th birthday–and am I always glad to be Charlie’s mother.

A constant theme in 2008 was the rebranding of autism, as Orac at Respectful Insolence referred to how the likes of David Kirby have been constantly saying that “autism isn’t autism”—-it’s “mercury poisoning,” “vaccine-aggravated mitochondrial disorder,” “mercury-induced neurological disorder,” etc., etc.

(April being Autism Awareness Month—-does your child know about this—let’s not get into what such “rebranding” would do to the month…….)

The notorious Judge Rotenburg Center in Canton, Massachusetts uses electroshock “treatment” on some its residents, some of whom are autistic. In April, one of its staff was charged with rape, assault, and battery of another staff member—-more about the very, very questionable practices at the JRC is noted here.

Dr. Andrew Wakefield can be said to be the figure who set in motion the claims of a link between the MMR vaccine and autism. He is currently being charged with alleged violations of medical ethics by the General Medical Council in the UK. At a hearing in April, Dr. Wakefield noted that he is “‘perfectly willing to accept [his] understanding was wrong.’”—- Also on the legal front: 2008 saw a version of “vaccine litigation subpoenagate,” with Neurodiversity blogger Kathleen Seidel successfully quashing a subpoena issued to her by vaccine litigation lawyer Clifford Shoemaker, and Dr. Marie McCormick also issued a subpoena.

More about the presidential candidates’ views on autism became apparent, especially those of Barack Obama and Hillary Clinton, and, yes, on vaccines—-and as to why vaccines, and topics like the so-called “autism epidemic,” continue to be discussed, seems to be a sign of at least a little paranoia and politicking……….

I would say I wrote a lot, and probably too much, about Jenny McCarthy in 2008 (and writing less about her, and about the whole vaccine-autism idea, is making its way higher and higher up onto my list of New Year’s resolutions).

Nonetheless, vaccines dominated discussions about autism in March in the wake of announcements about the case of Hannah Poling, whose “pre-existing mitochondrial disorder…. was ‘aggravated’ by her shots” and led to symptoms of autism, as conceded by the U.S. Federal Court of Claims. A lot of debate followed about the Vaccine Court, to the point of general vaccine fixation.

Some mentions of birdsong and fish, and then, in the course of yet again saying it’ not the vaccines, some thoughts about why this is such a personal matter.

Also: Insurance coverage for autism “treatment” was regularly mentioned in 2008 and legislation put forward in many states: For what in particular? For how long?

And: Does your child know that she or he is autistic?

An expecting mother wrote this yesterday on BabyCenter:

…..more than anything else that could go wrong with this pregnancy, I am more worried about my child having autism than anything else in the world.

These causes, many reported by the popular media, and without valid evidence to back them up, are listed:

- Vaccines, especially with thermisol, the kid getting them all at once (flu shot, MMR)

- Smelling cleaning products while pregnant (Lysol, etc.)

- Advanced maternal age

- Having autism in your family

- Heat, hot baths, hot showers

- Worrying and stressing

- Rainy climates

The UC M.I.N.D. Institute’s MARBLES (rs of Autism Risk in Babies—Learning Early Signs) seems to be referred to, though I don’t think the “smelling” of cleaning products during pregnancy is specifically mentioned. The study linking rainy climates to autism rates is noted—a study about which there’s doubt as to “whether the paper deserved to be published and reported,” as stated in the Times Online. Older parents, fathers as well as mothers, have been linked to autism, and there’s a number of studies for genetics, for autism being “in the family.”

But “worrying” and “stressing” and hot showers and baths?

Will we next be hearing about whether worrying about autism be linked to causing autism?

Yes, the numerous claims that vaccines can be linked to autism have been gnawing away at the fears of parents-to-be even though vaccinations do not cause autism.

Hope that the expecting mother on BabyCenter might, instead of fearing autism, learn about it, learn that there’s a lot that you can do to help a child, and know that life raising an autistic child—-life raising a child—-isn’t what the popular media makes it out to be. It may be a different parenting adventure than one might think—for us, for sure, it’s been full of much that’s unexpected, and more goodness and love than I could ever have bargained for.

February brought on winter doldrums and also a topic that came to dominate 2008, the presidential election, starting with a post on the candidates’ views on autism prior to Super Tuesday on February 5th.

There was more evidence refuting the vaccine-autism link—and specifically the MMR vaccine—from the Archives of Disease in Childhood. We need to get the word out about the evidence that there is no link, as it’s been reported that more parents are choosing not to vaccinate their children, because they fear that vaccines or something in vaccines might cause autism. And measles cases have been on the rise in 2008, with 5 cases reported in San Diego (and soon 11 cases) in mid-February.

In the UK, the National Autistic Society began another phase of its Think Differently about autism campaign, with a focus on autistic adults and the message “I Exist.” The need for this campaign was more than made apparent on hearing comments about autistic children as “retards” made by Adam Jasinski, a contestant on CBS’ Big Brother TV show.

After an article in Wired magazine featuring Amanda Baggs and Michelle Dawson, questions about autism as disease/disability/difference led to discussion (of a rather heated nature, at times).

And then, on February 28th, then-presidential-candidates Senator John McCain linked the rise in autism cases to mercury in vaccines…………………

It’s the countdown to the end of 2008 and here is some of what was going on at the beginning of the year:

The trial of Dr. Karen McCarron began on January 7th. On January 16th, McCarron was ruled guilty on all counts. On April 1st, she was sentenced to 36 years in prison for the May 13th suffocation of her then 3-year-old daughter, Katherine “Katie” McCarron.

January also saw the publication of further evidence refuting a link between vaccines and autism, with the publication in the Archives of General Psychiatry on the decline in thimerosal exposure and the continue increase of autism rates. A study in Pediatrics offered further proof that the vaccine-autism hypothesis is a hypothesis. The study showed that ethyl mercury is expelled faster from babies’ bodies than thought, and that there is “…..little chance for a progressive building up of the toxic metal.”

Nonetheless, a new legal drama, Eli Stone, based its first episode around a (highly fictional) case involving a child becoming autistic due to a vaccine. (And what celebrities have to say about science was a constant irritant throughout the year.)

Also, new research on genetics (on chromosome 16 and a test for autism) appeared in January, and throughout the year, with one scientist proposing a unified theory of autism.