If Charlie’d had a younger sibling, would we have decided to participate in studies like this one at the University of Washington, as noted in the Seattle Post-Intelligencer:

Autism researchers at the University of Washington are seeking parents who will allow them to do brain scans of their infants.

………….

The UW scientists are looking for 84 six-month-old infants from California, Oregon, Washington, Montana, Idaho, Nevada and Alaska who have an older sibling who has been diagnosed with autism. They also need 34 infants with typically developing older brothers or sisters.

Each child will be scanned three times over two years.

Certainly I would have considered having a sibling of Charlie’s participate in such a study—-and then, after reading (wading) through so many studies, so much research, about or said to be related to autism over the years—-sometimes one wonders a bit about where it’s all going.

Some research from June: Are low birth weights and preterm births risk factors for autism? Does autism present diffrently in girls and women?

June was, too, the month that a certain female celebrity led, along with some others, a rally about “vaccine safety” in Washington, D.C.. Questions swirled about the extent to which said celebrity’s own child is recovered or not, or undiagnosed—-and perhaps this sort of discussion is beside the point, especially if you consider the notion of neurodiversity, according to which, just as we’ve come to understand that there’s diversity in terms of race, ethnicity, and gender, so we’re also starting to learn to think of diversity in terms of different ways of thinking, of different minds.

Autistic Self-Advocacy Network President Ari Ne’eman and I were interviewed for a Good Morning America segment on neurodiversity in early June—-a show which provoked quite a bit of discussion.

An autistic child was removed from an American Eagle flight in late June and, in July, a family with four children, one with autism and one with cerebral palsy, was told they were “too disruptive” to continue on a connecting flight from Phoenix to Seattle.

The NIMH put a study on chelation on hold, leading to considerations of whether the study should just be done to prove the efficacy, or lack thereof, of this alternative, and dangerous, treatment for autism. —–Another new diagnostic technique looked at whether one looks at the mouth or eyes of a person’s face. —- And findings about the rates of autism in Somali children in Minneapolis led to a lot of speculation and fears of some external “thing” causing such an increase. — Talk show host Micahel Savage launched a thousandfold of ire towards him for some, indeed, savage comments about autistic children and their parents.

Bringing the focus back to what we can do for autistic individuals in the here and now, it was reported that restraints are being used more and more in public schools

With the advent of summer, Jim and Charlie began another summer of bike rides, with Charlie more and more taking the lead and Jim devising newer, and longer courses. And July and the 4th of the month prompted more thoughts on the meaning of independence and also about why I don’t hold Charlie’s hand anymore (well, most of the time).

And please remember, with flowers and swings, Evan Kamida.

Am off to visit the cemetery where my grandfather, Yeh Yeh, great-grandmother, Bak Bak, great aunt, another great grandmother, a very good friend of the family, and many other great relatives are, and then out to lunch in Chinatown with cousins, aunts, uncles and (hopefully, if she’s up to it), my grandmother, Ngin Ngin, who’s 104. It’s always good to be with family—today’s St. Petersburg Times describes the bond between 12-year-old twins, Anthony and Ryan Moran. Ryan is autistic and Anthony is his constant companion:

Most of the time it’s good having a twin, Anthony insists. You always have someone to talk to, even if the other person can’t really talk back.

Ryan understands everything. “Only sometimes he doesn’t care what you’re saying, so he walks away.” And he can speak “when he wants to,” Anthony said. “One time when we were in the bathtub he said the whole pledge to the flag.”

Ryan will catch a ball, but he won’t throw it back. He’ll rebound your basketball but won’t shoot it. In Little League Challenger baseball, he’ll run the bases — but only if Anthony runs with him. “He’s always thinking about other things, so he can’t concentrate,” Anthony said. “It must be weird to be in his world.”

“Weird” maybe, but these are two brothers who are very clearly connected, however much one speaks and one is not able to.

A sad sad story from New York—7-year-old Chelsea Maldonado fell from a fifth-story window of her parents’ Bronx apartment on Christmas Eve, the New York Daily News reports—-reminds me of what I’m grateful for. Chelsea was autistic, blind in one eye, and bound to a wheelchair. Thinking of her family, and many families—-the Morans in Florida and many many more—-hope you’re all warm and safe and together today.

So says 15-year-old Roderick Robertson, who takes care of his younger brother, Tim, every day. Tim has autism and his older brother is his regular caretaker, today’s Courier-Mail reports:

Roderick, who also lives with his stepfather, two stepsisters and stepbrother, describes home life as “hectic” but says it with a smile.

There are times when he misses out on social outings with friends because he looks after Tim and school holidays aren’t always as fun and carefree as they are for many of his peers.

“I have a roster of when I need to be at home to look after Tim over the school holidays,” he says.

“I take him to the park, muck around with him - that sort of thing.”

Sounds like how I spend many any afternoon with Charlie, and many moments that I wouldn’t have missed for anything.

Are disability dolls a “blessing or a sick joke“?, the June 25th Times (UK) asks. There are dolls with prosthetic devices, dolls with Down Syndrome, and Chemo Friends for kids with cancer (and back in 1997, Mattel came out with Share a Smile Becky, in a wheelchair). My Autism Dolls makes ragdolls from puzzle piece fabric, and My Sibling Dolls come with stories about the special needs of siblings with developmental differences and are assembled and packaged by special needs teens and adults.

Not sure what an autistic doll would look like—-like any doll, I would say (we’ve always been more of a stuffed animal household).

More about the “niche marketing” of disability dolls at What Sorts of People.

Composer Allen Shawn writes about a birthday meal for his 59-year-old twin sister, Mary, who has lived in an institution for the mentally retarded in Maryland since she was 8 year old, in last Sunday’s New York Times magazine. For years and years, the meal has been the same—”chicken salad, tomatoes, rolls with butter, iced tea, ice cream and cake”—-as Shawn’s 99-year-old mother has wished. At a birthday meal when their mother “would not last much longer,” Mary comes to the apartment she has not lived at for so many years:

Escorted by an aide, Mary arrived dressed in a snappy striped shirt and pink summer pants. She had a particularly comfortable, confident air. In fact, it was as if she knew her way around. Although she asked where the bathroom was, she walked to it as if from long-buried habit. Her ease in the apartment, and with our mother, was self-evident. But this was the least of the surprises. She ate her chicken salad and rolls and tomatoes, to be sure, but she was particularly taken with the [never before on the birthday meal menu]antipasto, of which she asked for second and third helpings, while asking for more of everything by name. She dug into the watermelon [also a first-timer on the menu] and the unexpected salad with obvious delight and interest. More than once she said that she was having a wonderful time.

And all of this occurred in the presence of a miracle. From the moment our mother was brought into the room, her eyes remained open in unmistakable wonder and joy, as she looked from one of us to the other in astonishment and gratitude, galvanized, awakened, transfixed, radiantly fulfilled by the sight of her daughter. The occasion brought her back from a kind of somnolence that had lasted for months, as if encountering bright daylight after an age of darkness. Her eyes remained opened even after Mary left, and that night she barely slept.

It’s never too late to shake things up a bit—-who know what unknown tastes await us?

My brother deserves better is the title of a June 21st article in the New Zealand Herald about 24 year old 24 Jonathan Eady. The article is a real call for change: Jonathan lives in a residence with high-wire mesh gates, a bare interior with pinewood walls, and a bedroom with only a mattress. He’s there 24 hours a day except for a daily beach walk with two staff members:

The spareness of his room may reflect the fact that at times he becomes angry and destructive. There is nothing else for him to do except watch TV. His sisters talk in distress about how degraded Jonathan’s life has become and what happens when he’s constantly bored. The room is reasonably clean, but it doesn’t pay to look too closely at the walls.

The New Zealand Herald tells how it came to pass that Jonathan ended up here in a situation that is (as the reporter, Chris Barton, is shocked to note) “sanctioned by both the Ministry of Health and the Family Court.” Jonathan was removed from his family home in Whangarei in 1998, “shortly after a picture appeared in the Herald of Jonathan with his mother Esther and father Viv Eady.” Read more

Two brothers, Jack and James Collier of Gastonia, North Carolina, created Aces for Autism, a week-long tennis clinic for autistic children. They came up with the idea in honor of their 12-year-old sister, Oliver. From the Gaston Gazette:

“There aren’t really a whole lot of sports opportunities for kids with autism,” said James, 15. “Olivia loves to be outside and we thought maybe other kids would love to do this, too.”
……
“I was a little nervous coming in,” said James. “What if it doesn’t work? But it all turned out pretty nicely.”
Added Jack, 18: “It was challenging at the beginning but they got the hang of it more by the end… once we got the basic ideas through to them, it went a lot more smoothly.”

The highlight for the brothers was seeing Olivia play tennis for the first time.

There’s a tennis court near our New Jersey condo and my parents gave us some old raquets and a can of balls…… now if I can just remember how to keep score.

Yesterday I noted two musicals about autism—-here’s two more movies with autistic characters. Today’s New York Times has a round-up of 15 films in the 13th annual Rendez-Vous With French Cinema 2008 series. One is a documentary by Sandrine Bonnaire about her autistic sister, Her Name is Sabine / Elle s’appelle Sabine:

…..throughout her acting career, Bonnaire has also been filming her younger sister, Sabine. Called crazy by her schoolmates and diagnosed as problematic by the authorities, Sabine moved in and out of schools until, in her late 20s, she was put in a mental institution. Bonnaire’s very moving, enlightening film finds Sabine at 38, living in an adult care facility after having finally been diagnosed as autistic five years earlier. An exposé of the ignorance that has plagued the treatment of autism, the film is even more centrally about the relationship between Sandrine and Sabine — the care, the closeness, the feelings of guilt and especially the frustration as one sister feels helpless to stop the other’s decline.

The New York Times describes Bonnaire’s film as the “most wrenching” in the series:

Ms. Bonnaire’s documentary about her younger sister’s struggle with autism incorporates 25 years of home movies. The sadness of Sabine’s decline from a young woman with sparkling eyes into an anxious, fearful middle age (she was 38 when the movie was completed) is mitigated by the film’s portrait of a sisterhood that flourishes in spite of every obstacle.

It does sound wrenching, though—myself being 39—I’m not sure why the NY Times says that Sabine is middle-aged.

Another new movie from Australia, The Black Balloon, and includes an autistic character by the name of Charlie (how can I now be interested…..). Its director, Elissa Down, has two autistic brothers The Australian notes that the film has opened to “rave reviews” and profiles Tyne Miller, who is 19 and autistic, and who plays a lioness in a dance scene depicting Noah’s Ark in The Black Balloon. Says Miller:

“It was pretty interesting being in the movie, when we played together as animals……Autism means someone always likes to be alone, sometimes you like being with people and sometimes you don’t. My talking, my sounds, it’s difficult just a bit. It worries me a bit.

“I work at the library, I started last year. It’s going well. I don’t have any problems. I want to keep going working in the library. That’s it. I put the books away and the DVDs away. It’s OK work. A happy person? Yeah, I am.”

Today’s Man is a new documentary about 28-year-old Nicky Gottlieb, who has Asperger’s syndrome; the film was made by his sister, New York director Lizzie Gottlieb. You can go here and watch a short preview of the film, in which Nicky Gottlieb’s parents, Robert Gottlieb (who was Editor in Chief of Simon and Schuster, Knopf, and of The New Yorker) and actress Maria Tucci, describe his babyhood: When he was nine months old, Gottlieb had a number of seizures; his mother also noted that he “connected” in a different way to people. A top New York neurologist told his parents that Gottlieb might never talk and might be a “vegetable”—– on the preview, you can see a black and white video of Gottlieb saying his first word, “bread.”

Gottlieb was diagnosed with Asperger Syndrome when he was 21 years old, after his sister had started to make her documentary about him. New York magazine has a short Q & A with Lizzie Gottlieb (one question asked is “Given your bookish family, do you believe that Asperger’s is just an extreme form of genetic nerdiness?”). The January 2nd webzine Shuffleboil has an extensive interview with Lizzie Gottlieb in which she talks about growing up with a brother on the autism spectrum, but with no diagnosis; her brother’s school experiences; and what he is doing now. Says Lizzie Gottlieb:

He had these extraordinary abilities, the languages, he had these incredible math abilities, and I think I felt really proud and really impressed, and I think because there was no diagnosis, on the one hand it was hard, because there was no feeling of community, no sense of him being part of something, but on the other hand, there was no limit to what he might achieve. He had these extraordinary, savant-like abilities and I felt that was the most special thing in the world. I had a magical brother and I could understand him in a way that nobody else could. As a kid, I felt like I got to be a parent of this extraordinary being.

It was harder when I grew up and he grew up. I think as he got older, he had been this extraordinary, limitless child and he became this very strange young man. He looks older than is and I think it’s harder now because he’s not a genius child with problems, he’s a man that people look at and think is strange and that’s hard.

Today’s Man will have its US television premiere on PBS’ Independent Lens tomorrow on January 8, 2008.

UW launches study to treat infants without symptoms, reports the January 2nd Seattle Post-Intelligencer in an article by Paul Nyhan:

The University of Washington launched one of the nation’s first studies on preventing autism in infants Wednesday and will spend the next four years exploring the benefit of intensive and early therapy on the mysterious disorder.

The university’s Autism Center is now looking for 200 local families to join the study of autism, which is diagnosed in 1 out of 150 children, according to the latest study by the federal Centers for Disease Control and Prevention.

The study is unusual because autism research and treatment has typically focused on treating or reversing but not preventing the neurological disorder. Autism often emerges when a child is around 2 years old.

“Other research has shown that the earlier the intervention, the better the outcome in treating children with autism. One of our goals is to be able to identify autism as early as possible before obvious symptoms show up so we can intervene while the connections in a child’s brain are still plastic,” Annette Estes, associate director of the Autism Center, said in a statement.

The hope is based on the fact that UW clinicians have generally been more successful the earlier they have treated children.

“This is the question we are trying to answer: ‘Can we do this?’ ” Estes said in an interview. “It is a bold question to try to ask.”
……

The study will focus on newborns who have older siblings on the autism spectrum, since those babies are far more likely to develop the disorder. One out of 20 infants with an older brother or sister with autism will also fall on the spectrum, according to the university.”I think this is the only study I am aware of … to really identify autism this early, six months or younger,” said Estes, who will lead clinical assessments.

You can read a more extensive summary of the study here.

I’m not sure if “can autism be prevented?” is the right question to ask. The word presumes a lot about what early (very early, as we are talking about babies here) intervention can and should do; teaching a child to make eye contact and interact socially with others does not mean they are no longer autistic: What about sensory issues? What about different ways of seeing and perceiving the world, perhaps through synesthesia? (This last link is to an interview with psychology professor Simon Baron-Cohen, in which he also discusses a study involving babies who were some 24 hours old.) The particular techniques that will be used to “prevent” autism involve training mothers “to engage their infants in eye contact ……. each mother and child will be videotaped interacting once a week for nine weeks.” (That is, the treatments are educational rather than biomedical; such biomedical treatments are often referred to when one hears that autism is treatable and that it is reversible.) As Lisa Jo Rudy at About.com notes that “simply connecting infants more fully to their mothers (and only their mothers) through eye gaze and other techniques” suggests that “autism - with all its complex uniquenesses - is really just a lack of connection with mom” and senses echoes of the refrigerator mother theory of autism aetiology.

The UW study is specifically looking for infant siblings of autistic children as “about one of every 20 infants who have an older sibling with autism will develop the disorder” (according to Newswise Medical News). In comments on a recent post here on which we are not; Emily has also posted on this), we would definitely wonder if another child of ours would also, like Charlie, have autism, and we would prefer to know sooner, but not to try to “get the autism out” of another child—not to “prevent autism,” but to know “what he has” and to acknowledge his disability and difference (as I’m quoted in the article“>article about). And, too, to know that the reasons that Charlie had various delays—in his gross motor development, his play, and his communication— was not because we were doing “something wrong” as parents.

The Kennedy Krieger Institute is also conducting research on detecting autism in the younger siblings of autistic children.