Additional responses to “What’s the one thing you’d like to say to your relatives about your autistic child?”:

“Just love him and enjoy him.  Let me worry about the rest.”

“Thank you for loving him and treating him like the beautiful blessing that he is. We’re blessed and lucky to have family that ‘gets it’!”

Photo by Me-Liss-A (flickr.com)

“Sometimes (my wife and I) need your help watching him so we can spend some time on ‘us’.”

“How we live for the ‘us’ moments, and have learned not to feel guilty about it. If only our loved ones could understand.”

“Please don’t look at him for what he is not, but rather for what he is.  There is not one day that goes by that he does not amaze me, I wish you could see and understand the same.”

“Recognize some of the exact same ‘quirks’ in yourself.”

“Thank you for loving him and recognizing his gifts. Understand that spending time with him is all he really needs.”

And in response to the question, “What’s the smartest thing anyone ever said to you about your autistic child?”:

“He is charming and intelligent beyond his years”; “He is a tutor in his math class”; “Quite frankly, he is refreshing compared to the rest of the kids (in middle school)”;”We love him here at school and we will miss him.”

Thanks as always to everybody over on the LinkedIn boards.

* * *

“Autism Parents’ Plea: Understand Kids’ Meltdowns,” from CNN.

IQ testing for children with autism, from about.com.

“Alex,” want to go to a movie?” I asked him on the way. “No,” he answered, shaking his head. Expected. I also expected to get to see about half of Night At the Museum II.

Alex made it through Shrek 3 a few years ago; he’d seen it a week or so before with his class. He made it through his second showing with only an occasionally reciting of the ABCs with his voice at full volume. Few people in the sparse audience seemed to notice. “Really,” Jill hissed to me from her movie seat at the time, “if the worst thing that every happens in their lives is that a little autistic boy makes a little noise at a movie, then f—’em,” except she didn’t whisper in hyphens.

She found $6 shows that keep the lights up and the volume a little low. I don’t think the volume and the lighting mattered to Alex, but the ticket discount sure mattered to me, especially for a movie I expected to see about half of. The movie was 10 in the morning, and informally word gets around the special-needs community that these shows could draw an audience accepting of behavior like Alex’s.

Bribed Alex with a full tube of Chips Ahoy one quarter cookie at a time. Not the healthiest breakfast, I realize, but yet again life was a matter of acceptable casualties for a desired objective: getting Alex to sit through a movie. And he did, drumming on the armrests, sometimes chattering. I can’t say he actually saw the movie, but I can’t say he didn’t, either. I have a feeling our movie viewing is about to pick up.

***

ChARMTracker, a web-based application for autism treatment management, was slated to debut today at the Autism One Conference in Chicago. ChARM is the first internet-based system available in the market that enables parents to gather, and track information they collect on their children, such as gastrointestinal and immunological issues or chronic infections or daily records of supplements, prescriptions, diets, educational interventions, and environmental changes.

The Interactive Autism Network (IAN) Project has released its Parental Depression History Questionnaire, in which parents share “their experiences of the challenges involved with raising a child on the autism spectrum.”

Part one of the report explores “stress associated with child-focused issues, such as challenging behaviors and erratic sleep habits.” Part 2 will address additional issues, such as the impact on finances or marital relationships.

I haven’t read the report — I’d like to, in the same way traumatized Vietnam vets wanted to see Platoon — but I have a feeling it reads like a template for a lot of lives.

“For many families,” the report opens, ”the experience of raising a child with an ASD begins with a feeling that something is not quite right. Perhaps during infancy, the child seems to be behind in development …” (”Jeff… he doesn’t look at me.”) “Eventually, as the feeling grows stronger, the family may seek a diagnosis to explain the child’s emerging, more pronounced autistic behavior.” Oh yeah, the doctor with the dolls, who didn’t take insurance.

“Whether the diagnosis comes earlier … or later … chances are the family is already under considerable stress. No aspect of family functioning is unaffected.”

Sounds spot-on so far. Autism jerks every aspect of our life like fish jerking a line.

The report (findings are still listed as preliminary) cover child behaviors such as meltdown and aggression; parent self-esteem and feelings of competency (I take the silent, seething, knitted-brow approach to such moments, and one teacher surveyed said her parenting experience “has completely blown my confidence” as a professional); improvement of behavior over time; “other people and their lack of understanding” (how long is this report?); sleep disruption and its exacerbation of stress (“well over 50% of the problem, I think,” said one mother, and “it’s literally killing my family” said another parent); and treatment issues.

“I am so tired,” concluded one parent, “of fighting.”

The report is well worth reading.

Image: IAN

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.

Seems likes CNN is running a three-day series under the name of “Autism 911,” in which they’re focusing on a California family, the Bilsons, whose middle child, 13-year-old Marissa, is autistic and has tantrums that are “off the charts and seemingly unwarranted.” In “Supernanny” fashion, an autism consultant from an ABA provider, Autism Partnership, has been called in and, it seems, the CNN show will see if it’s possible to “[rein] in” Marissa’s behavior.

Since she’s 13, I’m wondering if she’s entering, or isin the midst of, puberty? As noted, adolescence and the hormonal and other changes has made this school year—already challenging as Charlie started middle school—-even more, well, challenging.

And then there’s this quasi-sensationalistic statement on the CNN piece:

….many of us have never seen autism in action……

The statement’s said following Mary Bilton’s uncertainty about what to do, but it seems rather presumptive, as if most people have never seen anyone with autism (with the 1 in 150 prevalence rate for children, most people probably have met someone with autism, whether they know it or not) and as if “autism in action” is equal to tantrums (talk about a limited view of autism). A state from the co-director of Autism Partnership, Dr. Ron Leaf, says something more hopeful and, I’d say, accurate:

The one thing that Leaf believes they all have in common is that “[autistic persons] are not expected to do enough.” Leaf insists we have set the bar too low for what we think children and adults with autism can do.

You can say that again—-presume competence and it’s onward and upward; assume “he can’t do that”—-we can’t do that, for Marissa Bilton, for any child.

So, you’re reaching for the eggnog or another piece of gingerbread and Great Uncle W says to you, “Now what is all this I hear about autism and vaccines?”

Or, some friendly step-relatives happens to end up next to you while the Christmas carol sheets are being handed out and, just as you’re trying to sneak out of the chair to sit by your child who already has his hands over your ears while your musician second cousin starts playing something from Jersey Boys on the piano to expressions of delight, said step-relative says, with a concerned smile, “Does he have this thing called sensitive-processor disorder too? A friend says her nephew has it.”

Now don’t get me wrong. After the initial incredulity that Charlie “had” something, my extended (and not small) family has made it a point to reach out and include Charlie. Considering that a frequent family activity is “getting together in someone’s house or an economically priced restaurant in Oakland Chinatown,” and a certain amount of conversation is about the food we ate last time we met, the food we’re eating, and the food we’re going to eat (say, when we get together for dinner……..that night), Charlie is quite in his element and certainly knows how to work the lazy Susan.

Lest eating numerous Chinese meals (ok, sometimes we “go American” and eat sandwiches) in various settings with various combinations of relatives seems boring and repetitive to you, I can see how, if we lived in California, this would provide Charlie with constant opportunities for interactions with the same (more or less) people. I was a picky eater as a child, so I suspect my family watches Charlie’s hearty eating with some equally hearty approval (and I think he’s started on another growth spurt—-he spent most of a snow day last Friday and the weekend sleeping, and I just realized the sleeves of his coat ride up when he raises his arms). It’s true, Charlie doesn’t run off to hang with my cousins’ kids, but he does like to be in the same room or nearby them, with Jim or me or my parents around.

Mostly my relatives like to hear what’s going for Charlie at school and someone inevitably says that “X who they know has a child with autism,” and various therapies get listed. One side of my family being quite up-to-date regarding technology and TV, should anyone mention that December 11th The Doctors episode on which DAN! doctor Jay Gordon I am grateful to have checked in with Orac at Respectful Insolence’s thorough working over of supernova stupidity:

What’s really annoying about this episode is that, mixed in with some accurate information is a bunch of infuriating false “balance” and Dr. Gordon’s antivaccine stylings. The parents (Dan and Lori) featured in the segment have seven children, with another one on the way, and four of their children are autistic. I don’t know about you, but to me that fact alone would strongly suggest a genetic component, but naturally these parents blame vaccines for their children’s autism.

As Orac concludes, “the one thing that The Doctors demonstrates beyond a shadow of a doubt is that having physicians involved in the making of a show about medicine and medical controversies is no guarantee that the resulting show will be science-based”—-indeed, the resulting show will be TV medicine or science, Hollywood style, and, as noted when the comedic legal drama Eli Stone aired back in January of this year, the whole “child becomes autistic after receiving a vaccine and some professional [legal in Eli Stone; medical in The Doctors] proves there’s gotta be a link” gambit can fit very well in the allotted hour, with some commercial breaks allowed for. The idea that vaccines can be linked to autism is readily explained as a simple matter of cause and effect, plus you can insert, to good effect, a few shots of those needles and those mysterious vials that have had who knows what injected into them by some unknowing pharm tech.

So yes, I am feeling prepared to address any “but what about those vaccine” questions—-and the sensory stuff—-and, if no one’s rushing off to take a turn at Guitar Hero, am glad to speak to genetics and the fact that autism really is a family thing.

We do not, as I’ve noted from time to time, have a TV set—a fact which, when I happened to mention it to my students a while back, completely shocked them. “What do you do?” they sputtered. The class was my Elementary Latin class and it was one of those “teachable moments” when I could have launched into a discussion about “how did the Romans spend their free time” and “what about those giadiator fights.” It was the week before exams and we had so much to review and so I let the moment past, and got back to the fourth conjugation of verbs.

Apparently I’d made an impression on my students, as they brought up the not-having-a-tv business a couple of times (mostly, I suspect, to avoid having to think about that inevitable entity, the Final Exam). “I have to have TV,” one student commented. And another: “Dr. Chew, doesn’t your son want it?”

My answer further confounded things. Charlie, as I’ve noted before, is not a TV watcher or, for that matter, a video watched, or a player of video games, or a player of computer games, or a user of the computer in general. I guess it is a sort of a stereotype or autism myth, or possibly even an autism reality, that autistic children like all things electronic. (We know a boy who, in his earlier childhood, had a total fascination with electric cords and outlets: Oh yes, dangerous!) Charlie appears to be in the (very) (small) percentage of children to confute the stereotype.

Charlie usually tells me “I need a break” after a maximum five minutes at the computer and, in the good old days when we had a TV set and cable (because we actually do own a TV set, but have not bothered to get cable), Charlie mostly liked to watch videos. Not just any videos, of course, but about 4 or 5 certain ones of The Purple One, and a few select Wiggles ones too. An attempt to switch to DVDs was only partially successful, Charlie having an unshakeable preference for the larger rectangular objects with that visible strip of tape (Charlie having a longstanding preference also for cassette tapes, but that’s another story). By the time we cancelled Comcast, the only thing that was being watched on the TV was some ESPN by Jim and Charlie glancing occasionally on.

All of this is to say that I am indeed going to miss seeing Jenny McCarthy, in her capacity as Generation Rescue spokesperson, on Larry King Live tonight. Having, as you may also know, written kind of a lot about McCarthy and her stance about, or rather against, vaccines, I kind of have a feeling that I’ve some idea of what she’ll be saying. Courtesy of my email inbox, I’ve been sent a summary of the show:

…….hear the facts tomorrow night as Larry King asks the tough questions on:

* How to vaccinate while lowing [sic] the risk of children getting autism
* How to effectively treat and prevent autism, ADHD and other neurological disorders and chronic illness

In-ter-est-ing. Sounds like there’ll be some references to how a parent can change the schedule of vaccines (despite the fact that vaccines don’t cause autism). Also, sounds like Generation Rescue is extending its concerns/campaign/rescue operations beyond autism, to ADHD and “other neurological disorders and chronic illness.”

Though what if autism, ADHD, “other neurological disorders and chronic illness,” still exist even after vaccine schedules are changed? What’s to be done—change the schedule again? Admit that vaccines have been, and are becoming, a sort of sideshow in the larger discussion about autism, and a topic for TV talk shows and celebrity magazines—-something that distracts us from the really pressing, urgent questions and concerns regarding autistic children and adults, like how to create and maintain good schools with good services, trained aides and staff and therapists, jobs that draw on people’s talents and choices for housing, and much more?

Whatever gets talked about on Larry King Live tonight, I suspect it won’t be enough to convince me to call up Comcast so we can watch TV.

First, huge applause for Bonnie Sayers for organizing, garnering prizes, managing Autism Twitter Day.

Did you tweet? (I did, though not as much as I would have wanted to—-a thing called giving exams, and grading exams, and end of semester business…….)

What did you think? Do it again?

Yes, it’s today, Tuesday, Dec 16th  – 9AM, 12:30 PM and 8 PM (Pacific Standard Time). Autism Twitter Day is open to Twitter members, specifically those who are members of the autism community, whether you’re a parent, sibling or relative, and too those on the spectrum. Prizes will be given out, most geared to children and young adults with autism or Asperger syndrome; lots more information about the day is here.

The hashtag to be used for autism twitter day is #ASD. So, if you post a tweet today on the topic of autism / positive autism awareness, please use the hashtag, either in front or at end of the tweet. You can open up a window at www.summize.com and input #ASD to follow along with the conversation at the specified times; conversations may well run longer than one hour. And, stay tuned at Autism Family Adventures for prize and panel information.

Huge kudos in advance to Bonnie Sayers, who organized this event and who’s put together an ever-growing list of prizes (which will be awarded based on people’s knowledge of autism spectrum disorders). Due to the time differences (I’m on the East Coast), I won’t be able to follow all of the conversations, but I will be as much as I can.

Get your tweeting fingers on………