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!).

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……….

And here’s autism on a list of CNN’s top 10 health issues of 2008, with more than a nod to the vaccine issue …… and from Mark Miller’s special needs blog, his list of the “top 10 moments” in disability policy and politics.

Your top 10 of 2008?

It’s said to be something that parents of children with developmental disabilities experience. An article by Amy Basking and Heather Fawcett coins the terms “Empty Nest Envy,” as noted in today’s Orangeville Banner:

While most parents can look forward to children spreading their own wings, there are some who look to the future with trepidation and uncertainty. Not just for themselves, but more importantly for their adult children who have developmental disabilities. These parents, when their children graduate from high school, suddenly find themselves supporting their adult child full-time.

The reality for these parents can be daunting. In the article, the authors talk about how for one family their 28-year-old son remains with them. Despite thinking that he would be living on his own with supports at this age, the reality is that he will probably remain with them “until one of us dies or we’re in crisis.” This couple has little time alone and never the opportunity to holiday away together.

Another mom, who is 60 with a 30-year-old son with autism, is quoted as saying, “When the kids graduate there is nothing but endless applications for funding. I can’t afford to retire. I have no savings. I’ll retire when I drop dead.”

The just-this-week published Easter Seals Living with Autism study reports that more than 80 percent of adults with autism between the ages of 19 and 30 are still living at home and I do wonder what wil happen for Charlie. Sure I think a lot about, advocate for, how to provide more housing for disabled adults, more jobs, more and more and more: But how to turn needs, advocacy, testimony, research, into realities? Into an actual place for Charlie to live when he’s older, with the supports that he’ll need?

Let’s say, I don’t want to have develop empty next envy. But it may well be inevitable.

The Women’s Rights blog over at Change.org has a post about the Top 10 Moments of Feminism in 2008. The selection of Sarah Palin, Governor of Alaska, as Senator John McCain’s running mate sparked (I guess that’s an understatement) lots of discussion in general, and certainly in the autism and disability community, and in particular regarding Palin’s baby son Trig, who has Down Syndrome. Would you consider the choice of Sarah Palin, special needs mother, as a Top 10 Moment in the annals of special needs families in 2008?

Arne Duncan, the superintendent of the Chicago school system, has been chosen as the new Secretary of Education by President-Elect Barack Obama, as noted yesterday in EdWeek and on the New York Times’ The Caucus blog. From EdWeek:

As Chicago schools CEO, Duncan tapped a panel to craft curriculum-based assessments to guide teaching, bolstered spending on anti-violence prevention measures, and tested out a program allowing teachers to evaluate one another.

Duncan supports the basic framework of the No Child Left Behind Act. In testimony before a congressional committee in 2006, he called on lawmakers to “maintain the law’s high expectations and accountability” but to amend the law “to give schools, districts, and states the maximum amount of flexibility possible.”

Any thoughts about the new Secretary’s position on, and knowledge about, special education in general, and autism in particular?

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………

While I’m contemplating where to locate twinkling bike lights and as it’s the holiday season, I thought I’d make a confession:

Charlie’s never sat on Santa Claus’s lap.

We have tried, when he was much younger and we found ourselves in a mall in New Jersey, the land of malls and mallrats. Or maybe we had gone to the mall that day for that sole purpose. Something about “mall air” and the deliberately smiling velvet-clad elves/Santa’s helpers, and the line of overly excited, bored, or wandering about children, led Jim to say, quite wisely: “Let’s get out of here.”

We never really brought up the matter after that. Charlie was around 4 or 5 then and he wasn’t too inclined to sit on anyone’s lap for too long, and we worried about what if he got upset and back-arched while Santa was a ho-ho-ho-ing, and we found ourselves handed a picture of forced smile Santa and not smiling Charlie, for a not-cheap price. And so we kept sending out photo cards with Charlie in random candids, usually shot outside (and often from the summer, by the ocean).

On once relaying our guess-we-gave-up-on-the-Santa-thing, I was immediately reminded by my mom of the response that both my sister and I had while sitting on the lap, or even getting near, Jolly Old St. Nick. “You cried,” my mom said. And, indeed, there’s nary a photo of me on Santa’s lap in the rather extensive photo and slide archives in my parents’ house.

Which brings to me to a quandary that’s a sort of corollary: The whole matter of telling Charlie about the guy in the red suit who comes down the chimney and, for that matter, the bunny that brings the basket full of Easter eggs, and the fairy who takes away your teeth and brings coins……while we’ve talked about all these to Charlie at the appropriate holidays, as of a couple of years ago, we ceased to. Charlie never developed any particular interest in any of those make-believe characters. He’s never been one for stuffed animals (aside from the says-100-things Barney he used to have) and his main concern regarding his teeth was getting that loose hanging thing out of his mouth.

Part of me feels that maybe we didn’t try enough to explain about Santa Claus et al., and the other part of me sends out a reminder: You would have had to reveal that Santa = Dad and Mom anyways.

What Charlie most seems to be interested in during the holidays is seeing my parents and staying in their house at the bottom of a hill in Oakland, California, and eating in a lot of Chinese restaurants with food-laden lazy Susans swinging ’round. I have a rather large extended family who likes to get together and, as the three of us usually only visit once a year (Charlie and I did go out to California in June, but it was a very teary visit as Charlie really missed Jim), Christmas has become a time to connect and reconnect with my relatives (I haven’t lived in California for over twenty years). As it’s rather likely that we may end up in California, we try to pack in a lot in each visit, and our time on the west coast with Charlie—it means a lot to show him and Jim all the places (Chinatown, where my grandmother Ngin-Ngin still lives; the cemetery where Yeh Yeh, my grandfather, and many other relatives are buried) that made up my world as a girl.

Yes, Santa will just have to wait.

There’s been studies about older parents, both fathers and mothers, being more “at risk” of having an autistic child, and especially if it’s their first-born child—-now, a study published in Oxford University’s Schizophrenia Journal is suggesting that being a younger dad means you’ll have healthier children. From today’s Science Daily:

“There is a growing body of data showing that an advanced age of parents puts their kids at risk for various illnesses,” says Dr. [Mark Weiser from Tel Aviv University’s Sackler School of Medicine]. “Some illnesses, such as schizophrenia, appear to be more common the older parents get. Doctors and psychologists are fascinated by this, but don’t really understand it. We want to know how it works.”

To explore this important question, Dr. Weiser looked at data collected by the Israeli army. Subjects included more than 450,000 male teens, aged 16 and 17. The teens were asked these questions: How many good friends do you have? Do you have a girlfriend? Do you generally prefer to be with or without a group of friends? How often do you go out on Friday evenings? Do you tend to be at the center of a party?

Controlling for the variables of IQ, mother’s age, socioeconomic status and birth order, the researchers found that the prevalence of poor social functioning increased by 50% in boys with fathers 45 years old and up.

Dr. Weiser does note that “‘many of the most dramatic effects in this study are driven by dads in their 50s’” and that “‘the difference in risk between someone who is 35 or 45 is so small that it’s irrelevant.’”  So how much of a difference does parental age make, and isn’t it also necessary to consider other factors, such as genetics?

‘Tis the holiday season and I have pretty much finished shopping for everyone on our list, from relatives to my sister to multiple cousins, office staff, the letter carrier, Charlie’s teacher and aides, Jim—-and I’m down to one last person.

Charlie.

What do you get for the boy who doesn’t seem to want anything?

Today’s Chicago Tribune captures this dilemma:

Parents struggle with whether to oblige the child who desires nothing more than church directories, word puzzles, spinning toys or even cleaning supplies—all real examples from youngsters’ wish lists.

Friends might see the child’s exotic interests as humorous or cute. But the youngster’s family recognizes that the obsession represents their child’s special need for a coping tool or bridge to the outside world that is otherwise confusing and overwhelming.

One mother, Laurie Jerue, whose 20-year-old daughter Sarah is autistic, has “struggled for years with bittersweet emotions as she bought her daughter Big Bird toys while the girl’s peers moved on to teenage interests.” Over the years, the Chicago Tribune notes, she’s realized that her daughter is “merely a collector”—-as Jerue says,

“Once I let go of some of those social expectations . . . and bought what I just thought would make her happy, it’s all been good.”

Charlie’s often looked for a long time at Barney and Wiggles DVDs (Teletubbies bring a fast “NO!”) in the store racks, and then said “no” when asked if he’d like to get one. He’s often received DVDs of movies like Harry Potter that he’s not been inclined to watch; just yesterday, I saw him taking out the DVD cases, and often his interest in things grows, very slowly, over time. He’s been on and off interested in electronic toys (Gameboys, iPods, and the like). Last year we got Charlie a new bike and he certainly regularly requests, and takes a lot of joy in, long bike rides with Jim. (Get a basket for his bike, maybe?)

Charlie’s favorite things—-the things that he does indeed ask for and clearly wants—are often things he’s had for awhile (his old beat-up blue backpack) and, too, things that belong (belonged) to Jim, me, my parents. If I may say so, he lacks consumer consciousness and frankly, in an age when a Walmart worker got trampled to death by very over-eager (understatement) on Black Friday, I feel more than grateful that Charlie’s our boy.

(In other words, I’ve already got all the gifts I need.)

And if I may rephrase my title—-it’s not so much that Charlie isn’t asking for anything. It’s that I need to listen to better to what he’s telling me, about what he does not want, and what he does.