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!).

Change.org has been running a competition to vote on the top Ideas for Change in America. The competition ends on December 31st—-yes, that’s Wednesday—and here are three ideas that I think can clearly make a difference in the lives of autistic individuals:

Fully Fund Medicaid Waivers for the Developmentally Disabled

Replace No Child Left Behind With a Strong Education Policy

Independence and Services for Disabilities and Autism

The top 10 ideas will be announced in January.

(For discussion about the idea about the “Autism Reform Act,” see this post on autism legislation.)

The Florida legislature has declared the first half of October as Disability History and Awareness Weeks, today’s West Volusia Beacon notes. Indeed, the legislature is said to be “trying to change the negative image, perception and treatment of people with disabilities.” The article highlights programs for disabled students throughout the county, such as Deltona High School’s Multi-VE program.

VE stands for varying exceptionalities. Multi-VE students’ disabilities and challenges include hearing or language impairments, mental handicaps, emotional and behavioral disorders, multiple physical handicaps and disorders all across the autism spectrum.

Located in Building Z on the 92-acre campus, Deltona High School’s Multi-VE program serves more than 50 students, ages 14 through 21. They attend classes to learn to function independently and to acquire skills to help them gain employment after graduation.

At Deltona High School, “VE” really means “victories everywhere,” because students with disabilities are showing they can be successful in and out of the classroom — that they have abilities!

The classrooms and programs recall those in my son’s school district here in New Jersey—-but we could all use more of the “VE” attitude, wherever we are.

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.

16 months ago, Olivia Agbonlahor and her 7-year-old twins, Great and Melissa, were deported from Clonakilty, County Cork, in Ireland, to Nigeria. Great is autistic and, as reported in the Irish Indepedent, he is considered “wicked” and “possessed by voodoo” in Africa.

Great’s autism is simply not recognised due to the common stigma in Africa against autism. “I have to do my best, but it is not easy,” said Olivia.

“His behaviour is getting worse every day — that is the problem. He cannot play with other children. People ask ‘what is wrong with this boy’ all the time,” she said from her home in Ghana.

While the teachers that helped the family when they lived in Clonakilty and Killarney have sent over computer learning aids for Great, there is little else to occupy him.

“The only thing that keeps him calm, that he can stay with when you leave him is the computer — there are some CDs that they burned from Ireland, the special needs assistants for him, to be practising,” said Olivia.

“He can do that for hours but he cannot be doing that all the time, it is not good.

“In Africa they believe that there is something which is wicked about him — that is the problem. It is always the case, there is a lot of stigma. That is Africa, everywhere.”

The Irish Independent notes that there is only a “slim chance” that the Agbonlahors will be able to return to Ireland, after they were ordered to deport by the High Court. The family currently lives on money sent by Olivia Agbonlahor’s husband, who is in Italy.

The Global Autism Project exists to “to address the needs of children with Autism in developing countries, to address the fear that plagues parents of children with Autism where there are few resources, and little or no understanding of Autism.” I am trying to contact them to find out how we might help the Agbonlahors—-and if you have any ideas, please leave them in the comments below.

My son Charlie is, as I’ve noted here, 11 1/2 years old. He’s been attending middle school since September and it hasn’t been easy, and we’ve started to get the feeling that it’s not going to get easier. Charlie is in a self-contained classroom, located in a large middle school in our school district. There are three other boys—all older than him by a year or two, and all shorter than him—a teacher, and four aides in the room. He starts the day with Adapted Physical Education (APE) around 8.30am) and has speech therapy briefly with a speech therapist most days of the week. An occupational therapist sets up programs on specific skills, like writing and washing his face, that he works on throughout the day. He has a really good teacher and behavior consultants regularly visit the classroom. Charlie’s teacher and I email each other daily, sometimes a couple of times a day.

He does all right generally, but, for the past few weeks, he seems to be having one “incident” per day, in which he grabs at someone or throws himself down on the ground or tries to hit his head. Sometimes it happens because his classroom gets very noisy and, with his increased sensitivity to sound, he just can’t take it at some moments. Other times—as when he threw himself down on the sidewalk while on a walk outside last week—it’s less clear.

Charlie’s academic progress has always been slow and painstaking. He’s now writing both his first and last names and can write most letters of the alphabet (s seems to be particularly challenging), counting money, doing single-digit arithmetic with a calculator. Unlike the other boys in his class, Charlie is not interested in watching videos on a break (they have a TV set and headphones) and is minimally interested in the computer. It has been good that more of his schedule has allowed him to get up from his desk, to work on life skills like cooking and laundry: Charlie, as his teacher noted, likes to be busy and occupied, and to get up from his desk.

Sometimes it just feels like everything is working against him this year, though. After years of bus drivers who always greeted him with a “good morning, Charlie!” and a “smile,” and who clucked in sympathy when he was upset and assured me that “he’ll be okay, we all have our bad days” the bus driver this year has been, well, she doesn’t do any of those things. Added to this is the fact that Charlie’s bus arrives over an hour earlier than it did last year. He’s always had a hard time waking up, but this year it’s been compounded by a much earlier wake up time, and a less than warm atmosphere on the bus.

And middle school itself has been something of a brusque new world, after the coziness of Charlie’s classroom last year. As I’ve noted, the physical layout of Charlie’s room includes a low ceiling and no natural light. There’s over a thousand children at the middle school and discipline appears to be a priority, judging by administrators wielding walky talkies and the constant emphasis that “you could hear a pin drop in these hallways” when classes are in session. There’s no more playground and the main colors seem to be (as they were at my junior high in California) brown and beige.

I noted that Charlie, while the youngest in his classroom, is the tallest and, I’d also say, the most muscular and athletic (the result of all that swimming and 8-plus mile bike rides). So when he gets upset, other people react a lot differently than if he were 4 feet tall and a skinny little boy: Charlie’s the same height as some of the aides (none of whom were the aides he had last year, including one young man who was over 6 feet tall and could still give Charlie a piggy back ride a year ago). And I more than suspect, I think I know—that when Charlie is upset, people don’t see a frantic child, overcome by his anxieties and racing thoughts and unable to express himself. They see a 5′ 4″ pre-adolescent who’s really strong, and they step back, and want to look away.

Jim and I anticipated that middle school and adolescence would not be easy for Charlie. We’ve been talking a lot, talking to friends, talking to Charlie’s teacher; we’ve been asking questions, thinking, reflecting on how easy it is to go places with Charlie, from stores to subways to restaurants, and how much he helps us out, doing more and more small chores around the house. We’ve wondered if he’s not been feeling a kind of loss for his old school and classroom and teachers. After all, every day he walks onto the yellow schoolbus so dutifully and I wonder what he thinks as it takes him to the middle school, a group of low-slung brownish buildings, surrounded by grass and set back from the road.

Previously when Charlie transitioned from primary school to intermediate school (he’s not really “in a grade,” and has always been in special ed classrooms), it was really tough. He floundered and finally all but fell apart in classrooms in another New Jersey town and, just under three years ago, we took him out of school in November of 2005, things got so bad. We’re not at that point now (or not yet) but Jim and I have been worrying; it’s been hard to find ourselves potentially back at square one with Charlie’s education, after disrupting every aspect of our lives to move into our current school district. I’m hopeful that we can get ourselves, just muddle, through, a difficult period. While, at home, Charlie’s not always been without anxiety (sometimes he just seems to need to sit in his room with his favorite things nearby; he tells me “bye Mom”—-sign of typical teenagerism?), things have been generally peaceful, and he’s clearly a bigger boy who can do, who wants to, and who often has to struggle to “do it right.”

Charlie spent much of the weekend sleeping and some of it coughing: I’ve had a bad cold for the whole past week, and Charlie finally caught it. Saturday night—after napping a lot—he couldn’t sleep till 4am (and was beside himself at one point). Sunday he was much more easy-going, eager to get on his bike, and, while sitting on the couch afterwards, telling me the names of the aide last year who gave him the piggybacks. And then, of one of the aides he has this year.

And saying yes when I asked if he wanted to go to school tomorrow.