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.

So, now that “a certain event last week has come and gone,” a question courtesy of Tina Brown in The Daily Beast (and thanks to Working Dad by Paul Nyhan):

Is Sarah Palin a potential leader for working moms?

And, more particularly and pertaining more to this blog, is she a leader—a model—for special needs mothers?

According to Brown:

…..[Palin] could play a valuable leadership role—right now—by being honest about and sharing what she really does know about: combining healthy ambition with mothering five kids. Confronting the pain she must have felt—and, even I dare to suggest, the guilt she won’t allow is there—at her own parental oversight when her teenage daughter got pregnant. Struggling with that other decision she has also blown off as an easy call: to continue with her own late-in-life pregnancy when she found she would give birth to a Down syndrome baby. (And it was a decision, “pro-life” platitudes notwithstanding.)

Looks like they’ll be some more skirmishes ahead in the Special Needs Mommy Wars. Prior to the election, Palin said that she’d be an advocate for “families who have special needs and children with special needs”—–I guess we shall see.

Yesterday ABC News reported on the difficulty of diagnosis and featured Jason Ross. Today’s ABC New looks at life after an autism diagnosis and interviews three mothers of autistic children to describe how families adjust after learning that a child is autistic. “‘There isn’t one stream that families find themselves in where they get carried along…….Life after diagnosis is normally a haphazard unfolding and everything is learning as you go,’” Dr. Jon Markey, a child psychiatrist at William Beaumont Hospitals is quoted as saying. Families—as Judith Ursitti, Kim Stagliano, and Jennifer Wood note—too experience “physical, emotional and financial meltdowns”; marriages are strained (one mother interviewed is divorced); parents become advocates.

“Scared, patriotic, worried, determined, tired, depressed, upset, anxious, terrified, hopeful; hopeful, happy, ready, tired, relieved, and, of course, nervous and anxious”—-that’s how the New York Times is reporting that voters in the US are feeling while awaiting results in the presidential election. At the risk of comparing our family matters to the political climate of the nation, I’d say that may of those words describe how I felt after Charlie was diagnosed and, most of all, “terrified” (because I had no idea what lay ahead) and “relieved” (because there was a way to talk about “what” Charlie “had”).

The diagnosis was just the start of a huge change in all lives and while it hasn’t been easy or without tears, stress and sorrow, life with Charlie—so different, so unexpected—has been, too, so good.

Soon as Charlie got on the bus, Jim and I went to vote..

“Special”—as in “special needs”: It’s a term used primarily (exclusively?) in regard to children. Sometimes, just saying “special children” means the same thing. But one wouldn’t use the word to refer to adults with disabilities.

Consider this example: At at an October 30th rally in Rush Limbaugh’s hometown of Cape Girardeau, Missouri, McCain-Palin campaign representative Senator Kit Bond (R-Mo) mocked Presidential candidate Senator Barak Obama for saying that he’s looking to nominate judges who empathize with “the disabled.” Sen. Bond was joining Vice Presidential candidate Sarah Palin at the rally. As noted in a press release from ADA Watch and the National Coalition for Disability Rights:

“It’s Halloween and it seems that Sarah Palin’s mask of support for people with ‘special needs’ is slipping. Despite past pandering to people with disabilities, McCain-Palin are actually opposed to vital disability legislation like the Community Choice Act and they want to appoint judges who will further roll back the civil rights protections of the Americans with Disabilities Act,” declared NCDR’s founder and president, Jim Ward.

NPR’s Nina Totenberg has reported that McCain-Palin’s and conservatives’ “most oft-mentioned prospects” for nomination to the Supreme Court include Ohio Judge Jeffrey Sutton. Sutton was opposed by hundreds of disability organizations when he was nominated by President Bush after successfully weakening the ADA with states’ rights arguments. As a sitting judge, he has recently supported the execution of criminals with developmental disabilities and has undermined the Help America Vote Act(HAVA).

Disability rights advocates are further incensed that the McCain-Palin campaign has reframed this civil rights struggle, one founded in concepts of equality, dignity and self-respect, as an issue of “special needs.”

Disability rights advocate, Steve Gold states, “Yes, we need support services. Yes, we need inclusive education. Yes, we need integrated employment. Yes, we need equal rights. This not ‘special.’ These needs are based on us, people with disabilities, equal members of our communities. We are not inspirational nor are we ‘special.’ We are PROUD PEOPLE WITH DISABILITIES who should push back when anyone describes us as anything but equal members of our communities.”

More about what was said at the rally at FOX News.

“Disabled.” “Special.” I know it’s just a matter of words—–and being the mother of a disabled son, and a son for whom talking and communication aren’t easy, I’ve become hyper-aware of how much words matter, and what they say and what they don’t.

So maybe it had to do with finding myself driving through a most unexpected (in New Jersey) October snowfall to take Charlie to a medical appointment (the dentist, to be more precise) on a cold mid-afternoon on Tuesday—-but as I glanced at him in the rear view mirror, a strong sense of déja-vu came into my mind. I was driving down a wide avenue on a snowy afternoon, gray sky, and strapped in the middle of the backseat, in his carseat, was my little boy and there was something wrong with or inside of him and no one seemed to know what, or to be able to say what, and not the kindly pediatrician we’d just seen for the nth time……

I was remembering the late late fall days of 1998. We were living in St. Paul, Minnesota, then (I was a newly hired classics professor here) and snow (flurries; storms) occurred regularly, and the days were rapidly shortening and the sky was gray and cold. The doctor talked about how Charlie was a likely candidate for ear tube surgery and how, if he didn’t start talking after that, “we’d have to see.”

If it were now—-when everybody, at least every parent of babies and young children—seems to have heard of autism (though not necessarily to know what it is), and when there are more tests to predict an autism diagnosis in infants, I think Charlie would have been diagnosed as a baby. At the very least, the “minor gross motor delay” that he was documented as having at the age of 10 months—he’d just started to roll over, wasn’t yet crawling or really pulling himself up, didn’t seem interested in moving from whatever spot on the floor where he found himself—-would probably have said to a pediatrician, some things need looking into. (Instead, Charlie’s then-pediatrician blamed me for catering too much to Charlie and so hindering his motor development.)

Everything was mystery and fog then, and a lot of blurry, and really intense, anxiety, I recall. It was hardly “easy” to learn that Charlie had autism, but it was, in many ways, a huge relief, and we started right in to learn about what we might do to help Charlie.

Flash forward to yesterday afternoon. Our low-slung green Saturn’s been long replaced by a black stationwagon and the little toddler in the car seat is now so tall he can’t stretch out all the way in the back seat. While Charlie had had a quite easy time at his last check-up in August, I always feel traces of nervousness taking him to the dentist, as older memories of really awful visits (four adults struggling to keep a wailing boy in the dentist chair, some years ago) are very fresh in my mind.

A hygienist led us to a room to a side and turned on a video of Disney’s Tarzan. Charlie got right into the chair and the whole time that he was sitting in it and the dentist and hygienist were requesting that he open his mouth and keep his hands down and poking in mirrors and other dental tools: For all this time, Charlie was at ease. The only time he got really agitated was when (while we waited for the dentist to examine him) the credits of Tarzan came on the screen. Charlie talked about Barney really loudly and anxiously and when I asked him if I should turn off the video, he cried out, “yes.” He kept poking at the buttons of the dentist’s tools and running his hand on the chair’s handles, both while we waited and when the dentist paused to talk to me. I asked if the seat could be raised and the dentist pushed a button: Another smile from Charlie.

Charlie had no cavities or sores or anything. Some new teeth (including a molar) are coming in.

And, while Charlie was getting his teeth examined, I was standing a foot away from the chair, holding onto his two Leapsters. He knew what to do, and he did it, thanks to a couple of years of practicing with his home therapists.

Jim teaches late in the Bronx on Tuesdays so it was Charlie and me for the rest of the day. We went to the pharmacy to pick up some things (including two sodas); practiced cello; and went swimming. Charlie was so excited to be at the pool that he ran towards the bleachers and ended up howling on one knee. I got him to sit down: No bleeding (thank goodness) and then he pulled off his shirt and jumped into the pool and good thing there was almost no one besides us in it, as he splashed quite a lot of water around with powerful kicks. After dinner, I asked Charlie to get out the dustbuster and he did, and then sat at the kitchen table to do three homework sheets. A shower and Charlie announced he wanted “bedtime” at quarter after 9.
Arguments are often made—as in this recent Washington Times op-ed by two fathers of autistic children, Michael O’Hanlon and Stuart Spelman—about why it’s first of all necessary to provide intensive educational (ABA in particular) teaching to autistic children as soon as possible, in the hope that they may “wind up mainstreamed in school” and have their “prospects for graduating from school, holding a job and having at least some real friendships” greatly increased, and not be such a “burden” to society as adults.

But any “agenda for autism” ought, I think, to take more of a long view, and be more hopeful about the long view. My son’s never been mainstreamed in school; we nonetheless consider his early years of education extremely beneficial. School graduation, a job, friendships; all these are up in the air. Charlie may well be more than adequately trained for more than a few jobs, but will there be employers who’d like to hire him? Will an employer—will we, as a society—be able to accept him as an individual who’s “different” and change ourselves, to make things better for him and others with his disability?

Charlie’s going to have a lot of needs as an adult, and he’s most likely going to need a lot of support, but I don’t think those are grounds for seeing him as a “burden.” It’s a chance for us to envision a communal response for those who need the support and the understanding. And without enough of these, and the belief that a child can do it—can sit in a dentist chair all on his own and smile about it—-things you never thought you’d see can become not only true, but part of the list of things you do any day, every day.

Through laboratory experiments with rats, Prof. Marta Weinstock-Rosin of the Hebrew University of Jerusalem School of Pharmacy is studying how maternal stress during pregnancy can lead to developmental and emotional problems in their offspring. From a press release, which notes that some of the “unfortunate consequences” that children can develop are “slower development, learning and attention difficulties, anxiety and depressive symptoms and possibly even autism.”

Weinstock-Rosin has been able to show through her laboratory experiments that when rat mothers were subject to stressful situations (irritating sounds at alternating times, for example), their offspring were later shown to have impaired learning and memory abilities, less capacity to cope with adverse situations (such as food deprivation), and symptoms of anxiety and depressive-like behavior, as compared to those rats in control groups that were born to unstressed mothers. All of these symptoms parallel the impairments that have been observed in children born to mothers who were stressed in pregnancy, she points out.

Further experiments by Weinstock-Rosin and her students have shown the crucial effect of excessive levels of the hormone cortisol that is released by the adrenal gland during stress and reaches the fetal brain during critical stages of brain development. Under normal conditions, this hormone has a beneficial function in supplying instant energy, but it has to be in small amounts and for a short period of time. Under conditions of excessive stress, however, the large amount of this hormone reaching the fetal brain can cause structural and functional changes. In humans, above-normal levels of cortisol can also stimulate the release of another hormone from the placenta that will cause premature birth, another factor that can affect normal development.

Prof. Weinstock-Rosin will present her research at a conference, “Long Term Consequences of Early Life Stress,” to be held at Mishkenot Sha’ananim in Jerusalem on October 29 and 30.

Parents of autistic children may, I suspect, may approach these findings with some hesitation, due to older (and widely discredited) theories of autism causation, such as the “refrigerator mother” theory and the more recent, and simply inaccurate and offensive, comments by Denis Leary about “laziness” in parents with autistic. (Leary’s been blaming his Irish-Catholic parents for his controversial remarks—but perhaps he ought to cease blaming others and listen to his own words.)

And I should note, the press release about Prof. Weinstock-Rosin’s study ends with the phrase

Husbands take note!

Autism gets mentioned for the first time in a presidential debate on October 15th; here’s more news:

• After Many Years, A Diagnosis
  Deborah Lipsky was in her 40s when she found out that has autism.
• There Goes Another Autism Myth
  While out riding his bike, Charlie hears another child crying and…….
• Denis Leary Does a Michael Savage
  I know Leary’s a comedian but some things just aren’t funny—-alumni from Emerson College don’t think so either.
• McCain and Obama Debate: Down Syndrome, Autism, Special Needs
  Disability historian Paul Longmore writes about Sarah Palin as “talking about special needs children” and Obama as having substantive plans for all people with disabilities” in the October 3rd Huffington Post
• Barney Can Wait
  What happened to all those Barney videos on YouTube?
• Cop Tases 16-year-old
  Police were called on Friday morning when a 16-year-old autistic student did not want to leave a school bathroom.
• Newsweek Q & A on Autism and What John McCain Said
  I was interviewed by Claudia Kalb in a web exclusive for Newsweek.
• “Food, flowers, and filth”—just not true
  What kinds of jobs are—will be—-available for disabled adults?
• Bram Cohen and “Autism Lite”??????
  Asperger’s Syndrome gets described (puzzlingly) as “autism lite.”
• Is it worth it for pro-vaccine advocates to appear on Oprah?
  Every Child By Two send out a request to ask Oprah to “dedicate a show to the science behind the question of whether vaccines cause autism.”
• “They are here, autism is here”—-Virginia Bovill
  The full quote from Bovill: “The thought of a world without all the people I have met with autism is not a world I would want to live in. I would rather people said: ‘They are here, autism is here - how can we help these children fulfil their potential; how can we support their parents?’”
• Do you ever turn off your cell phone?
  Obviously of course never, but that’s me.
• The Persistence of Autism Myths
  ABC News lists, and debunks, 10 myths about autism.
• Sarah Palin Interview: Comments on Special Needs
  Palin speaks kindly about special needs children but is vague about specifics.
• Autism “Debates”
  Palin’s been quoted as saying that families with special needs children would “‘have a friend and an advocate in the White House’” were she and Senator John McCain to win the election; what, though, about adults with disabilities, who make up 90% of the those with disabilities in the US?

From the October 23rd The Swamp, the Chicago Tribune’s Washington Bureau, is the transcript of an interview with Sarah Palin, the Republican nominee for vice president. Here’s some of what she said about families of children with special needs (Palin is to give a speech today in Pittsburgh—her first on policy—about special needs children):

“the federal government can play a very appropriate role in making this country a more welcoming country to those children with special needs to really make manifest our commitment to these children to provide them with equal opportunity with education, equal opportunity as they grow up to good employment and a chance to contribute and be quite productive and fulfill, and I think we can do a better job than where we’ve been.”

“Out of $3 trillion I’m sure there are efficiencies we can find all over the place and allow that reprioritization that I believe needs to take place. And it needs to take place again so we can make manifest that commitment that we have to provide opportunities to special needs children and special needs adults also. That is what I want to usher into Washington, DC, that spirit of inclusion in our society and recognizing that these children are not a problem, they’re a priority. Ushering in that good heart of America. One way to do that is by prioritizing budget.

“But it’s not all about the money, it’s not all about budgets, it’s about that spirit of acceptance and embracing that diversity that is in the world with children who are special, they’re a little bit different from the norm, and that diversity is good and for us it’s exciting and it’s a joyful challenge.”

“…when he was 2 and a half, [Palin's nephew] Karcher was diagnosed with autism. It’s been near and dear to our heart, trying to do all that we could. As governor, I was able to secure additional assistance of funding for our students with special needs in Alaska. It was a good boost that we gave there. But Todd and I have always had this mission within us to reach out and to try to help our families who had special needs. And then when Trig came along, it was Ok, now, even more of that connection that we have to these families. These families are coming to these rallies and it’s such a great appreciation that they’re showing to someone who is promising that they will have this friend and advocate in the White House who will help them.”

“When Karcher was first diagnosed, Heather knew that for Heather and Kurt, her son Karcher was going to be her life.

“She’s kind of put her career aside - she still works full time - she’ss kind of put career aside so she can nurture and teach and help Karcher. But she has asked to, I remember she asked with tears in her eyes, she says, what happens when Kurt and I, though, are elderly, then what happens to Karcher? Because he is autistic, his story, this is the story of millions of Americans right now, because of the prevalence of autism. I relate it to my own personal life, but I see it all around America. With more and more children being born with autism, this generation so affected, what does happen now when their parents can no longer take care of them. Collectively, as humanitarians, that is where we do unite.

“And government can play an appropriate role in that assistance. So that’s what I want to work on, also. Especially with autism. We need to strengthen the National Institute of Health. There needs to be funding there. If reprioritizing it is the answer, we’ll do that, reprioritizing funds to make sure we’re researching everything about autism and trying to find out what it’s cause is and what we can do to help these children and then again, its humanitarian, how we can help these families.”

Many kindly sentiments expressed here, though not much mention of specifics about legislation (like IDEA). It seems that Palin is seeking more funding for special needs—-research? education? services? this is not clarified—-by calling for already-existing funds to be reallocated and reprioritized. Regarding how much the NIH has devoted to research about autism spectrum disorders, see here.

According to the October 23rd Chicago Tribune, Palin’s Friday speech will

……..lay out the campaign’s plans to fully fund the Individuals with Disabilities Education Act, boost funding for special-needs children from birth to age 3 and allow parents to choose whether federal money for their child is used in a public, private, religious or secular school without navigating a cumbersome administrative process.

The federal government originally committed in 1975 to paying 40 percent of the cost of educating children with special needs, with the states paying the rest. But that has never happened; full funding would require approximately $26 billion a year, and the federal government currently shells out $10.9 billion.

The McCain campaign plans to phase in that money with an extra $3 billion a year over five years. McCain has called for a domestic discretionary spending freeze, but programs for disabled people would be exempt.

Stay tuned………

A commenter under the moniker of “Rainmanretired” posted this about the Q & A on autism and what John McCain said that was posted on Newsweek yesterday:

Kristina said she knew nothing about autism before she had a son with it, I was wondering just how she expected John McCain to know all about it? No he probably doesn’t know what all the differents’s are between all the different things that effect children BUT he wants to help ALL not just autism children. …….

I thought of this very question as I was talking during the interview about how I indeed “knew nothing about autism” before my son was diagnosed. I had barely heard, let alone thought of, the word “autism” before daycare teachers and an “evaluator” let the word slide past their lips, like a most furtive message. “Autism”: The word was always uttered in reverent tones of dread and the only proper response to hearing it seemed to be “oh no, not that, please not that, please not that!”

I was given pamphlets that I only read when I found them a year later, under a stack of cards and magazines and files on the dining room table. One—it was a light purple, with a drawing of little children standing hand in hand at the bottom—had a title like “About Pervasive Developmental Disorder Not Otherwise Specified.” Such a huge mouthful of a term, I thought, vague words, unhelpful, alien.

It was the au-word. Autism. The word was familiar to me for one reason only that I have to blush about: I teach Latin and ancient Greek to college students and autos, autê, auto is ancient Greek for “he, she, it,” for “self” and for “same.” And yes, for a mother who’d newly learned that her toddler “had autism,” being a translator of poetry from ancient dead languages seemed about the most useless occupation in the world.

Like many mothers and fathers who learn their child is autistic, I responded by throwing myself into learning everything I could about autism. I took a leave from my job, resigned from the job, stayed at home overseeing Charlie’s education, packed up our household to move back to New Jersey, and got two part-time jobs in fields other than what I had trained in, wondered whether (as more than a few parents wonders after raising autistic child and thinking about autism day in, day out, and in one’s dreams) I should become a teacher or therapist for autistic children.

I chose not to and, after some years, found my way back to teaching Latin and ancient Greek. Most (all) mothers (and parents) of special needs children have their hands more than full whether they have a job outside the house—-we’re all working mothers. Whatever my views about the politics of presidential candidates and autism, the choice of Sarah Palin has brought an issue I think all the time of—being a working mother of a special needs child—into the national discussion, and I appreciate this very much.

I often feel I’d have more than enough to do if I just had my job, or if I were “just” the mother of a boy with a lot of needs. Doing both “jobs” (motherhood’s not so much a “job” to me, as a way of being) has real benefits. I’m a teacher, to, and struggle to figure out how to best teach and motivate my students, and sometimes feel baffled when, despite my and their every effort, they “just don’t seem to get it”—-that tells me I have to change something I’m doing. On a more pragmatic level, knowing about autism, about Asperger’s syndrome, about learning disabilities, about ADD and ADHD, has made me much more attuned to the diversity (in all senses of that word, including neurodiversity) in my own classroom.

For doing my best by Charlie and by my students, knowing about autism has made a real difference. Without knowing about autism, and these past 11-plus years of taking care of Charlie, I don’t think I would be as good a teacher (not that I’m sure of how good a teacher I’m judged to be). I regret that I didn’t know anything about autism or special education or different pedagogical models and methodologies until I had Charlie.

And, just to be a bit polemical (political, even), it seems to me that an understanding of disability and of difference is something to be looked for in a teacher, in a leader……….even in a future President.

For me, still a lot more to learn.

Disability historian Paul Longmore writes about Sarah Palin as “talking about special needs children” and Obama as having substantive plans for all people with disabilities” in the October 3rd Huffington Post:

Even though 90% of the 54 million Americans with disabilities are adults, Palin, John McCain, and the news media have talked almost exclusively about children. And that talk has been mostly about “compassion” not “issues.” The McCain-Palin campaign website has a single page on “Americans with Disabilities for McCain,” but it says nothing about policy positions. Other pages mention autism and disabled veterans but no other issues.

In contrast, Barack Obama and Joe Biden have said little on the campaign trail about disability issues but their campaign website provides detailed policy proposals in a comprehensive “Plan to Empower Americans with Disabilities.”

Longmore compares McCain-Palin and Obama-Biden on healthcare, health insurance, and social services for people with disabilities. I’ve written previously about Palin on curing diseases and not on disability.