Thanks very, very, very much to everyone for your kind words about the big change. It is definitely a change and I’m still adjusting—-I’m very interested in knowing what you think. Thanks to all those—-Kev, Emily, Mike, Lisa—who’ve given the new autism blog a shout-out It’s been fabulous blogging with Dora and I’m very excited to be part of the Change.org community.

There’s been a couple of questions about what will happen to this blog: While I won’t be writing it after this week, someone (I’m not sure who) will be taking it over. As far as I know, the archives will remain on the web. If you’ve other questions, or if there’s a particular post that you’d like to bookmark or otherwise save but can’t quite remember the title for, or if you’d like to say hi, please send me an email. And hope to see you here……………

A long time ago (definitely “before Charlie,” which is “bC” to Jim and me) “someone” (she writes poetry) wrote this to me:

Poetry is life; it should change everything around it. Do only what changes you.

The lines were written at the end of a letter regarding a topic that was, at that point in time (I was about half as old as I am as I write this), of total everything significance to my life: What should I study in graduate school?

I was a Classics major in college and, finding the sustained study of Latin and ancient Greek intellectually intriguing, albeit a little wearying on the soul, I was drawn to another academic discipline, Comparative Literature; I had hopes of studying something called “literary theory” or just “theory” (as in something known as deconstruction). Should I stick to Classics, to the philological study of dead languages that I had been entrenched in since I was 13 years old? Or should I do something that seemed a bit more……daring, and venture beyond the pleasant realms of relative clauses of characteristic and indirect discourse, and the dative of possession, and learn about this theory thing?

Nearly two decades later, I can—as I think you can surmise—-only shake my head in exasperation at my younger self. Getting a graduate degree in whatever or whatever was the easy part: Holding onto my son when he was 6 years old and flailing, flailing, flinging his body and especially his head with every bit of his energy towards a manhole cover on a train platform in Newark, New Jersey—-and only wishing he’d stop, but he just couldn’t, and really especially wishing that the ring of people who were standing transfixed around us would just do something else than what they were doing (standing there and looking)——I never knew how easy I had it, when I was agonizing over graduate school programs in 1989.

Charlie was born some 8 years later and, ever since then, my life and that of my husband Jim’s had been one journey into the unexpected, of the unexpected. Charlie’s being diagnosed with autism in July of 1999 was but the moment when Jim and I, and Chariie, stepped onto a long, winding, and so often uphill road. And while I’ve still kept the collected opera of Virgil, my favorite ancient poet, close by, it’s Charlie who’s really changed everything.

To rewrite some of the words that poet once sent to me: Charlie is our life, and life with him has changed everything around us.

Because of Charlie, we’ve left jobs (a tenured, endowed position at a substantial midwestern university in Jim’s case) and moved our household several times (and there are more moves in the future, we know). Because of Charlie, everything is changed and different from what I thought my life at the forty year mark would be like, and while it’s not easy, it has been good.

And there’s a new change, a big one, right around the corner for me.

As reported, I’m blogging with Dora Raymaker about autism at Change.org starting now. The new blog is still a bit “under construction” but it’s up and running and some discussion’s started about, for instance, some autism controversies: Let me know what you think.

And yes—-I will not be blogging here as of next week. I have a lot more to say about that and it’s very hard to even think I won’t be writing at Autism Vox anymore. I created the name for the blog and have been writing it since February 2006. I’m hopeful about this change, but that doesn’t make it easier—–it’s been a long and interesting journey with Charlie and it looks like there’s a new path ahead, and I hope to continue walking on it with all of your company and community.

Because the journey is best with friends, my two great guys, and all of you—–onward, together.

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.

Starting January 5, 2009, voting for the 2008 Weblog Awards begins—–and this blog, which I’ve been writing since April of 2006, is among the finalists for best Medical/Health Issues Blog. I’m included in some good company, including Respectful Insolence—-The Differetial—-Junk Food Science—-Stirrup Queen.

Thanks to everyone for reading Autism Vox, writing in, sounding off—-it’s been a great year and onward into a new one (very very soon!).

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.

9-year-old Nicholas Benavides died Monday morning in a fire at his house in Corpus Christi, Texas, today’s Caller Times reports. Nicholas was autistic and, according to his grandmother, Maria Benavides, was “’shy, but also friendly and always smiling.’”

On Monday, Nicholas’ siblings, ages 11 and 4, were at their maternal grandparents’ home and Nicholas’ mother was at work. Benavides said her son, the boy’s father, told her he was doing laundry in a room at the rear of the house.

Fire Chief Richard Hooks said it hasn’t been determined if the boy was alone in the house. Fire officials were interviewing the boy’s father late Monday.

When Corpus Christi firefighters arrived at 10:37 a.m., about five minutes after the initial call, the front part of the house was engulfed in flames and a neighbor was trying to get inside, Hooks said.

…………..

Firefighters found the unresponsive boy inside the home about 10:45 a.m. Firefighters began CPR on the boy who was taken to Driscoll Children’s Hospital, suffering from serious burns and smoke inhalation. He was pronounced dead at 11:17 a.m., Hooks said.

Nicholas was a fourth-grader who, the Caller Times notes, loved to ride his bike and play in the yard of his house.

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…………………