What a week—–I guess that is kind of an understatement. There was a new, and frustratingly improbable theory of autism causation: Rain. The Times Online reminds us that, as has often been said, a correlation does not mean you’ve got a cause and notes that there’s indeed doubt as to “whether the paper deserved to be published and reported.” The line of reasoning followed by the paper’s author, Michael Waldman of the Johnson School at Cornell University is that living in a wetter climate leads children to stay inside more, and to be exposed to less sunlight and so produce less Vitamin D, and to spend more time on indoor activities such as watching TV—and to become autisitic.

Theorizing that TV might cause autism was the topic of an earlier paper by Prof. Waldman that relied as much on correlations and associations. I wrote to Prof. Waldman about his TV-autism theory back in October of 2006. The TV theory made especially little sense in our household because we don’t have a TV and, when we did, Charlie was not one to watch it, beyond certain favorite videos. Indeed, Charlie’s preferred activity is to be outside, pacing or roaming, preferably on a day with a clear blue sky and lots of sunshine. He is, though, pretty tolerant of rain and when it’s not too heavy—misting—-he doesn’t seem to care at all. This is obviously a correlation, but I’d say he’s more focused and calmed and at ease for being outside (mist or rain).

Anyways, as we have no TV, we weren’t able to sit in front of it to watch the results of the US Presidential election pour in (I did not mean that as a pun) on Tuesday night. Jim went to the gym and watched TV there and I flitted around between every major news website I could think of; Charlie was sound asleep, after a good day at school, a log walk (in misty conditions), and a potentially disappointing visit to the grocery store because they’d lost their power and almost all refrigerated and frozen items had had to be tossed, and Charlie was unable to find the usual items (vegetarian egg rolls and mini carrots, among others) that he favors.

You know what happened in the election, and then before you know it there’s been a brouhaha about the suggestion that Robert F. Kennedy, Jr., might be considered to head the EPA—-seems not a week can go by without a certain theory of autism causation pushing its way into the public discussion (and onto this blog). Turning to the topic I prefer to devote my energies to (despite what may seem to be the case), it seems that Colin Powell has been mentioned as a possible education secretary.

On which note—-it’s the annual convention for the New Jersey Education Association and Charlie (a student in NJ’s public schools for most of the past 7 years) has had Thursday and Friday off (hence a much appreciated grandparents visit). And while preoccupied with everything previously noted in this post, guiding Charlie (who made his Monday lunch after school on Wednesday) through a smoother, or reasonably smooth, long weekend has been the main business around here. He’s spent a fair amount of time shopping for new pants (this growth spurt thing just won’t let off), hanging with my parents and using an old computer. I took him for a long swim on Thursday night, Jim did a 12-mile biker ride, and we all went out for Spanish food afterwards.

Correlation between all that and a quite peaceful easy-feeling boy?

If you choose to see it that way…………..

Robert F. Kennedy, Jr. is (per the November 5th Huffington Post) under consideration by President-Elect Barack Obama to head the EPA?

The Robert F. Kennedy, Jr., who, in June of 2007, equated those people criticizing mothers of autistic children who believe that thimerasol in vaccines causes autism with those who “once blamed autism on ‘bad parenting,’ and ‘uninvolved’ moms”—with those who believe that”bad parenting” causes autism?

Being myself (as I wrote back in June of 2007) an “involved mother” of an autistic child, I appreciate this concern about public perceptions of mothers of autistic children. Once upon a theory of autism causation, mothers were held accountable for being cold “refrigerator mothers” whose extreme emotional reserve was thought to make their children autistic. Now, as Kennedy writes, scorn is cast upon some mothers of autistic children for being “too involved.”

But based on what he wrote back in June of 2007 and also in his 2005 Rolling Stone piece, Deadly Immunity: Robert F. Kennedy Jr. investigates the government cover-up of a mercury/autism scandal—-it might be said that Kennedy’s somewhat extensively “involved” in putting forth a certain hypothesis about what causes autism that is not substantiated by the latest studies? A hypothesis that has perhaps heralded the rise of dubious autism “treatments” such as chelation?

Seed Magazine endorsed Obama for his “embrace of transparency and evidence-based decision-making, his intelligence and curiosity echo this new way of looking at the world.” Here’s hoping this is not just a promise, but the reality for the next four years.

I was interviewed by Claudia Kalb in a web exclusive for Newsweek:

Spotlight on Autism: The mother of an autistic son reacts to John McCain’s recent pledge to help families like hers. Was it just rhetoric?

More about McCain’s comments about autism in the debate last week here.

Palin has experience with special needs kids, says an October 16th Associated Press article which I discussed some in the previous post. Says the Associated Press:

Sarah Palin is frequently seen at campaign stops cradling her infant son Trig, who has Down syndrome. Her decision to give birth to Trig even after learning her fifth child would have the condition has burnished her anti-abortion views with conservatives.

So viewers of Wednesday night’s presidential debate might have been somewhat taken aback when John McCain said his running mate understands “what it’s like to have an autistic child.”

Palin, it’s noted “does have a 13-year-old nephew with autism”: Karcher is the son of her sister and brother-in-law, Heather and Kurt Bruce and the family being “close knit,” Palin and her sister “often took turns caring for each others kids, especially when the children were younger,” as Taylor Griffin, a spokesman for the McCain-Palin campaign, said.

Not going to argue with that. Certainly in the nine years and counting since my son Charlie  was diagnosed, it’s rare that we meet anyone who does not have a child or relative or friend who has “something.” It’s more and more common, too, that we meet autistic adults, diagnosed or not.

And it’s an adult with disabilities that Charlie will be for most of his life, not a “special needs child.” Indeed, these days, I know that he’s getting closer and closer to adulthood as each moment passes. Jim’s been negotiating shaving Charlie’s upper lip with an electric shaver; those size 7 1/2 bowling shoes are already too small; I’m wearing the pants Charlie’s outgrown; after thoroughly perusing a size chart for boys’ XL coats, we got Charlie a small, adult size jacket; I’ve been listening extra-carefully to Charlie talking, as I suspect his voice may soon start changing. When we’re out (an impromptu dinner after picking up Jim from the train Wednesday night; on a walking tour of Jersey City Thursday afternoon), the first thing people remark upon is that Charlie is not like your average 11-year-old boy.

And yet he is. He’s got the carelessness about his clothes—t-shirts and long shorts or slightly longer pants every day, and a blue hoodie—and the swagger in his step. He’s growing up.

From the moment Charlie was born and the doctor said “he’s going to have to grow into these feet!”—from that moment, I knew my days of carrying him would be limited. No one thought I’d have a baby who was 21 1/2 inches long and over 8 pounds; a baby who never fit the “newborn” clothes my mother had stacked up so neatly in plastic bins; a baby who’s become a boy who’s always in the upper echelons of the growth charts for his height. Charlie is as tall as his oldest first cousin (who’s in his early 20s) on Jim’s side and Charlie’s well on his way to being the tallest of all. Even more, he’s on his way out of childhood into adolescence, teenager-hood, and adulthood.

It’s precisely herein that I take issue with Senator John McCain’s statements about autism and Governor Sarah Palin’s knowing “‘better than most’” about “‘these very special needs children’” and “kids, children, precious children who have autism.’” Of course my son is precious beyond words to me and to my husband Jim. But hearing that, as McCain said, “‘we got to find out what’s causing it and we’ve got to reach out to these families and help them and give them the help they need’”—-it’s good to hear autism and disabilities being talked about, but McCain’s words are very, very vague. Very. And, they’re not about disability and disability rights and the needs of disabled adults but about those “precious children who have autism.” They’re not about, it can be said, a kind of sentimentalizing view of disabled children—”poor precious kids one feels so bad to see them not be able to do things most any kids do“—-and a reluctance to understand that autism is a lifelong disability and that many of the issues facing those “very special needs children” will continue to face them adults, when people tend to stop thinking they’re so “precious” and worth the effort.

It’s been interesting to see how the choice of Palin as the Vice-Presidential candidate for the Republican Party has brought concerns about working mothers and about working mothers of disabled children up for national discussion. But expressions of sympathy and support are good to hear and only go so far—-autistic children, autistic persons, their families, and aging parents of again disabled children have very real, very pressing, needs every day. They need jobs and they need places to live in the community; they need supports and services and highly trained staff. There’s a pressing need for research into what works and what does not and how to make things better, for legislation and policy and programs.

There’s clearly a need for more understanding about what autism is.

(I.e., it not Down’s Syndrome.)

At last night’s Presidential debate, Senator John McCain said this about Governor Sarah Palin:

And by the way, [Sarah Palin] also understands special-needs families. She understands that autism is on the rise, that we got to find out what’s causing it and we’ve got to reach out to these families and help them and give them the help they need as they raise these very special needs children.

She understands that better than almost any American that I know.

And also:

And I just said to you earlier, town hall meeting after town hall meeting, parents come with kids, children, precious children who have autism.

Sarah Palin knows about that better than most.

That’s what Sen. McCain said—-and here’s the Associated Press on Gov. Palin’s “mixed” record about special needs. State funding did increase by $500,000 for diagnostic services for autistic children and by $250,000 to train workers in providing early intervention; Palin also pushed for an increase for severely disabled children’s education ($26,900 to $49,300 per student). But:

….programs and spending for special needs children haven’t been a highlight of Palin’s 21 months in office as Alaska’s governor, during which she has focused on cutting a deal for a natural gas pipeline.
Spending remained flat for the Department of Health and Social Services during her first year in office, although she oversaw a 6 percent increase in spending on agency operations a year later.
……
Palin’s vetoes to the state capital budget also struck hard at projects serving such children. Two months after Trig was born, Palin sliced half of the $550,000 capital request for an indoor training facility for Special Olympics Alaska, the local arm of the international nonprofit organization.

“We didn’t know what happened,” said Valdez Republican Rep. John Harris, who serves on the organization’s board. “Especially in light of the fact that the governor herself had a child who very well would qualify for Special Olympics. It’s a great learning tool.”

Yes, and something that many families with special needs children know to be of great significance in their children’s lies, as in this recent account by the sibling of an adult sister with Down’s Syndrome.

Did Senator John McCain conflate Down Syndrome and autism during the debate tonight?

As Andrew Sullivan just blogged:

I was curious about McCain’s apparent conflation of Down Syndrome and autism. They are very different ways of being human, but they do come under the same umbrella of “special needs” according to Wiki.

Here’s what McCain said about autism (go here for a transcript of the debate from the New York Times):

And by the way, [Sarah Palin] also understands special-needs families. She understands that autism is on the rise, that we got to find out what’s causing it and we’ve got to reach out to these families and help them and give them the help they need as they raise these very special needs children.

She understands that better than almost any American that I know. I’m proud of her and that she has ignited our party and people all over America that have never been involved in the political process. And I can’t tell you how proud I am of her and her family. Her husband’s a pretty tough guy, by the way, too.

Obama responded:

I do want to just point out that autism, for example, or other special needs will require some additional funding if we’re going to get serious in terms of research. That is something that every family that advocates on behalf of disabled children talk about. And if we have an across-the-board spending freeze, we’re not going to be able to do it. That’s an example of, I think, the kind of — the use of the scalpel that we want to make sure that we’re funding some of those programs.

Later in the debate, McCain said:

And I just said to you earlier, town hall meeting after town hall meeting, parents come with kids, children, precious children who have autism.

Sarah Palin knows about that better than most. And we’ll find –and we’ll spend the money, research to find the cause of autism. And we’ll care for these young children. And all Americans will open their wallets and their hearts to do so.

And from MSNBC by political researcher Domenico Montenaro, about McCain on “special needs”:

McCain mentioned that Palin knows more about the issue of autism than nearly anyone. What evidence is there of that?

Because Palin has a child with Down Syndrome, it can be safely assumed she feels a connection with parents of children with special needs.

But what does McCain-Palin specifically want to do about special education? Do they agree with IDEA? Do they want to expand rights for special-education students to private schools? Do they want to increase funding? Do they want more access, by way of funding, to special-ed advocates?

McCain also said they want to help find a cure. But how?

The NIH budget has been slashed in the past eight years. Does McCain-Palin propose additional funding, particularly for autism or Down’s research?

We don’t know. Nothing was or has been laid out.

And here’s some more about McCain and Obama on autism and disability.

And from Daily Kos is this account by a writer whose older sister has Down Syndrome.

CBS3 looks briefly at the presidential candidates’ stance on disabilities and highlights some of what Senator John McCain and Senator Barack Obama have to say about autism:

McCain: “John McCain is a co-sponsor of the Combating Autism Act of 2006. John McCain believes this legislation will increase awareness and public screening of autism spectrum disorder, and will promote the use of evidence based interventions and also create centers for research.”

Obama: “Barack Obama supports the Combating Autism Act which was signed into law in December 2006. As a U.S. Senator, Obama has worked to fully fund the Combating Autism Act. And, as president, Barack Obama will work toward full funding of the Combating Autism Act and work with Congress, parents and ASD experts to determine how to further improve federal and state programs.”

For a more extensive discussion about the candidates’ views on autism and disability, go to this earliest post, written in late August. Briefly:

On McCain’s website is a statement entitled……. Combating Autism in America; the statement highlights the Senator’s concerns about finding out why the incidence of autism has risen in recent years.

[McCain mentions] early screening, better options for treatment, and doing what can be done to enable autistic children to “reach their full potential; [these are] important and essential. McCain’s autism webpage does not specifically refer to services or education (and special education, IDEA, and autism are not mentioned on his page on education issues).

Obama’s plan on Autism Spectrum Disorders is in his section on disabilities.

Special education and universal screening for autism in young children are specifically mentioned in Obama’s plan, as well as support for lifelong services. There’s an understanding of autism as an “autism spectrum,” and that individuals at different ends of the autism spectrum and their families, all alike require, in varying ways, supports and services.

And if you click on “read more,” you’ll find Obama’s letter about National Disability Employment Awareness Month.

Read more

A study of autism among 378 Cambridge University students has found that autism is up to seven times more common among mathematicians than among students in other disciplines, and that it was also five times more common in the siblings of mathematicians, according to the October 5th Times. The genes that are thought to cause autism may also give mathematical, musical and other skills to those without autism. The study was led by Simon Baron-Cohen, director of the Autism Research Centre, who is quoted as saying:

“It seems clear that genes play a significant role in the causes of autism and that those genes are also linked to certain intellectual skills.”

Seven of the students in the Cambridge study were found to have autism, while only one in a control group of 414 had autism.

Baron-Cohen also notes other studies, one which found that the fathers and grandfathers of children with autism are twice as likely to work in engineering, and that science students also have more autistic relatives with autism than students in the humanities—-two findings that don’t quite adhere with Charlie’s situation. My mother’s father was a civil engineer and many of my relatives on my father’s side are engineers. Jim and I are not scientists, but definitely in the humanities, Jim being a historian and me teaching and writing about literature. Charlie is still working through very basic arithmetic.

He’s always been musical. He’s taken quite easily to learning piano and cello and is able to read music much better than words. I often understand something he’s trying to tell me when he sings part of a song or melody, or just by the tone of his voice, and he’s very attentive to the sounds, tones, and rhythms of our voices. He has no savant abilities though, in the past few months, after watching him swim in the ocean and ride his bike for many, many miles today (”’cause he’s fast,” Jim explained), he’s definitely got some athletic abilities.

Or maybe just some pretty good genes.

A 14-year-old boy, Gerwyn Morgan, has been missing from his home in Merthyr Tydfil, today’s BBC News reports. Morgan has Asperger’s Syndrome and there have been several reports of sightings of him; officers are worried that he has run away and residents have been asked to check “such places as outbuildings, garages and sheds.”

Definitely hope he is found and home soon, and safe.

Late Friday afternoon Charlie and I take the PATH train from Journal Square into Manhattan to meet Jim.

A young man in a backwards baseball cap moves his stuff out of a seat so I can sit beside Charlie.

Charlie gently taps the woman sitting beside him. She’s busy texting and looks up, smiles, and says “I understand. I have read about it.” She gets off at 23rd street and we exchange good-byes.

At the 33rd subway station, only two of the MetroCard machines are working and of course my card has $0.00 on it. Charlie in his blue hoodie is not the easiest to see in a crowd of commuters and I grab the hem of the hoodie and we try to find the end of the line, get into one line that is “cash only,” get back in the original line. A man in a corduroy jacket who was originally in line behind us appears and tells me that there’s no line at the machines downstairs. I thank him and Charlie and I rush down behind the two men who were in front of us (they heard too). We get a new MetroCard and are soon at Jim’s office.

Contrary to what I used to think when I was in warrior mother mode, people aren’t your automatic enemies when you’re out in public with your child.