Raw chocolate, that is, as someone on Craigslist suggests as an autism treatment; someone else, the mother of two adopted autistic children, writes about a specific product on an autism board. Why raw chocolate? This site lists a few “health benefits”; apparently raw chocolate is an antioxidant and has an ORAC (Oxygen Radical Absorbance Capacity) superior to that of prunes, blueberries, strawberries and spinach. I know “the other Orac” (over at Respectful Insolence) has had his hands full fending off anti-vaccine woo-mongers and putting the Post-Modernists in their place, but Orac on ORAC: That could be worth a box of See’s Candy. Will sugestions for novel autism treatments ever wane?

We started our son Charlie on the gluten-free casein-free diet over nine years ago, when he was two years old. After several years of faithfully adhering to it, with the rationalization that “since Charlie can’t say how he feels when eats wheat and dairy, we’d best just keep him off them,” wheat (not dairy—-milk products remain to be avoided) is slowly reappearing in Charlie’s diet and it’s been no big deal. Especially after Jenny McCarthy made claims of seemingly miraculous improvements for her son Evan on the diet, people have been wondering, and debating, its effectiveness. The University of Texas Health Science Center at Houston has begun one of the first double-blind, clinical studies to determine whether the gluten-free casein-free diet indeed plays “a role in autistic behavior as parents have anecdotally claimed.”

For the double-blind study, funded in its initial phase by supplemental funds granted by the Department of Pediatrics, researchers will enroll 38 autistic children ages 3 to 9. They will look at the influence of gluten and milk proteins in the intestinal function. Gluten is a protein in wheat; casein and whey are proteins in milk. Casomorphin, a peptide in milk; and gliadomorphin, a peptide in gluten, are thought to be related to changes in behavior in these children. Children will be taken off gluten and dairy products before the four-week study and then half will be given gluten/milk powder and half will be given a placebo powder.

Researchers will study intestinal permeability (leaky gut) through urine collection and behavior through psychometric testing.

Always good to get more answers.

Anecdotally, the biggest change since reintroducing wheat into Charlie’s diet is that we’re all less stressed about him getting “forbidden” foods into his system, and there is less worry among everybody as we can go to social events without bringing in “special food” that Charlie mostly turned his nose up at. He sees the rest of us eating something else, why not him; why keep excluding him?

But don’t worry, I am still not buying loaves of wonder bread. And, Charlie still has no idea what a Twinkie is.

On Sunday I saw a college friend who I haven’t seen since her wedding (which I was grateful I was even able to go to—–she got married just after we returned from the Midwest to New Jersey and Charlie, who was having a lot to adjust to, was still queasy from it all; Jim dropped me off in front of the church just before the bridal party was lining up, and my dress was somehow spotless).

Between my friend and me, there’s been several jobs, moves around the country, and she’s a mother now, too. There was an impossible amount of catching up to do. Nonetheless, the one topic we kept returning to was our kids, their education, their needs, and daycare.

Once upon a time my friend and I had talked for hours about avant-garde Asian-American performance artists: You talk about what matters with an old friend, and a good one. She mentioned one family she knows who had moved out to the West Coast and then come back to the Midwest, for the daycare, and I thought about how daycare was the very topic I had written about on Saturday night, before driving up for my visit.

As I’ve noted, Charlie’s daycare/babysitting team consists of primarily of two people who both work full-time relatively far away from our house (this would be Jim and me). The three additions to this team—-our speech therapist-once-babysitter and my parents who live 3000 miles away—help out more than I can say, at intervals. Charlie has too many needs to go to a regular daycare or after-school care and while it can be a bit harried to get home in time on the highway, and to make sure Jim and I coordinate schedules so someone can be home if Charlie gets sick, I’ve valued every moment of time I’ve been able to spend with my boy. It’s a big part of how I’ve been able to understand Charlie’s communication, of some words and singing, sounds, body language, gestures, shirt color choices.

Necessity is the mother of invention: We’ve managed because we’ve just had to, like families everywhere. I was checking out a Seattle dad’s blog and read about a just-published study in Pediatrics by an economist, Guillermo Montes, who’s also studied the effects of having an autistic children on household income. The new study is Child Care Problems and Employment Among Families With Preschool-Aged Children With Autism in the United States and is also authored by Jill S. Halterman, MD, MPH.

Montes and Halterman write that, in families with autistic children, there is “higher use of child care services and higher probability that child care problems will greatly affect employment.” More specifically:

The impact of childhood autism on parental employment is largely unknown. A nationally representative study estimated that households with a child with autism earn 14% less income than demographically and educationally comparable households. In another population-based study, fathers of children with autism were less likely to report full-time employment compared with other fathers and were more likely to work part time. A possible explanation is that the burden of autism on the family economy is mediated by different employment choices made by caregivers in response to inadequate community resources.

Research has shown that parents of children with emotional and behavioral disorders often lack appropriate community-based services and resources needed to support work and family obligations. Families may have to accommodate work and family life to the behaviors and needs of the disabled child. In this context, it is not surprising that families with children with serious disabilities balance family and work responsibilities differently from other families.

For preschool-aged children, a critical community resource is the availability and stability of child care services that meet both the child’s needs and the parent’s work schedule. Recent research has shown that that even publicly funded prekindergarten programs expel children with behavioral problems at higher rates than the public school system at older grades. The rates of expulsion for children with developmental problems from privately funded and operated child care centers are unknown but are believed to be higher, given that the private sector does not have the restrictions against expulsion that are present in the public sector.

While I don’t consider autism a “burden” (not in our household and lives), it is the case that Charlie’s needs have determined every aspect of our lives, jobs, and work schedules. Charlie’s had a lot of tough behaviors of the sort that people talk about in the context of “autism” and “nightmare”: These led to his being sent out of district in the town we used to live in, several moves, huge paycheck-swallowing therapy bills, etc., etc.. I hope the study can help to stoke a discussion about daycare, after-school care, community care, and work, and not be seen as further testament to the woes of families of autistic children.

On the way to visit my friend late Sunday morning, I realized I should have been on the Local lane of the New Jersey Turnpike, not the Express, but it was too late. I saw my exit four lanes over and across a concrete barrier and got off the road as soon as I could, before finding myself about to get on the George Washington Bridge. I turned around and went south, only to discover that there didn’t seem to be an exit on the southbound side and ended up in Jersey no-man’s land in a hospital parking lot. I couldn’t find a single sign for Turnpike North and didn’t want to get back on the Turnpike South and end up halfway home—I looked around and found a jughandle and signs for the GW Bridge and went over an overpass and voilà, a (tiny) sign for Turnpike North. This time I got off at the right exit and proceeded north (and passed a certain DAN! practitioner I used to go to for Charlie; that’s another post). I pulled into my friend’s parents’ driveway after going past their house, where, a long time ago, I’d stayed and enjoyed morning conversation with her father and older brother.

He has a young child now, too, and told me I recalled the main character of this movie.

(I haven’t seen it, surprise surprise—-that babysitter thing.)

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.

Using functional magnetic resonance imaging, researchers affiliated with the University of Washington’s Autism Center have found an “abnormal pattern of connectivity” in the brains of autistic adults; this different neurological “wiring” may be responsible for social impairments that are one feature of autism. The study, which is published in the journal Brain, focused on the brain regions that process faces, the fusiform face area. From today’s Science Daily:

The research team led by Elizabeth Aylward, a UW professor of radiology, examined connectivity in the limbic system, or the network of brain regions that are involved with processing social and emotional information. Participants in the study included 19 high-functioning adults with autism who had IQs of at least 85. They ranged in age from 18 to 44 and were compared with an age- and intelligence-matched sample of 21 typically developed adults. The group with autism spectrum disorder included eight individuals diagnosed with autism, nine with Asperger’s syndrome and two diagnosed with pervasive developmental disorder not otherwise specified. The level of social impairment for each autistic participant was drawn from records of clinical observations and diagnoses that confirmed that each had autism.

Each participant had his or her brain scanned while looking at pictures of faces or houses. Participants were shown four series of 12 pictures of faces and a similar number of series showing houses. Each individual picture was seen for three seconds. Occasionally the same face or house picture was repeated, and participants were told to press a button when this occurred.

The two groups’ performance in these tasks did not differ significantly, but the groups exhibited different patterns of brain activity.

Compared to the participants with autism, the typically developing adults showed significantly more connectivity between the fusiform face area and two other brain regions, the left amygdala and the posterior cingulate. In addition, autistic participants who had the largest social impairment showed the lowest level of connectivity between the right fusiform face area and the left amygdala and increased connectivity between the right fusiform face area and the right inferior frontal gyrus.

The brains of autistic people, according to the study, do not work as “cohesively” as the brains of those without autism.

My son has a great memory for people —- certainly for every teacher and therapist who has worked with him and close relatives —- though I wonder if it’s not their faces that he might remember, so much as their voices, how they hold their bodies, and other features. He’s attuned to something else besides just their faces—while autistic individuals may process facial information differently, perhaps this enables them to see other things and notice what gets missed?

I got this email from my dad on Saturday morning (it was written at 2.40am EST; he’s in California, so it was 11.40pm):

I was just on the computer and had channel 7 on for news and half-watching……heard a teaser for a coming program on autism and a voice asking someone a question concerning a “Charlie”. I turned around to see it and saw YOU.

While it’s possible my dad was referring to seeing a framed photo of me at various stages of my life (though the majority of the photos in my parents’ house are now of a certain boy, their only grandson), my dad did indeed mean that he’d seen me on tv.

So if you happen to be near one from 7-9am tomorrow, Monday, June 9th, and you happen to be watching Good Morning America, you may well see me. I was interviewed last Monday, along with Ari Ne’eman—president of the Autistic Self-Advocacy Network (ASAN)—about autism and no, it’s not about vaccines.

A new study in Pediatrics links low birth weight (less than 5.5 pounds) and preterm birth to an increased risk for autism in infants by about twofold, and more so in girls than in boys. From an overview at CBS.com:

When the 565 boys and girls with autism were looked at separately, the boys had less than a twofold increased risk of autism if they were born at low birth weight, but the low-birth-weight girls had a threefold or higher risk, found [Diana] Schendel [PhD, lead health scientist at the National Center on Birth Defects and Developmental Disabilities at the CDC] and her CDC colleague Tanya Karapurkar Bhasin, MPH.

They also found that low birth weight (less than 5.5 pounds) and early preterm birth (less than 33 weeks’ gestation) affected groups of children differently, depending on whether they had autism alone or autism and other developmental disabilities.

“There may be a lot of variation in the endpoint we call autism,” Schendel tells WebMD. The study result, she says, “really is highlighting that we aren’t looking for one cause of autism .” The study builds on previous research, some of which has also found a link between low birth weight and autism.

Anecdotally: My son was full-term and 8 lbs, 3 oz. A relative had a baby (a girl) a few weeks before Charlie was born; she was under lbs and a few weeks early. She met every developmental milestone very much on time and Charlie has been delayed in almost everything. And, Charlie has autism.

Mutations in the MeCP2 gene are known to cause Rett Syndrome, which causes impairments in language and cognitive and fine motor skills; according to the International Rett’s Syndrome Foundation, Rett Syndrome is often misdiagnosed as autism. Scientists have previously thought that the MeCP2 gene repressed other genes—switching them “off”; a study published in the June 1st Science shows that it also activates—-turns “on”—-a number of other genes. While Rett Syndrome occurs almost exclusively in girls, duplications of the MeCP2 gene cause Rett-like symptoms in boys along with (in some cases) severe mental retardation.

The lead author of the study is Huda Zoghbi, M.D., a professor at Baylor College of Medicine in Houston and an investigator of the Howard Hughes Medical Institute. Dr. Zoghbi also led the team that first linked deficiencies in the MeCP-2 gene to Rett’s Syndrome. From Science Daily:

[Dr. Zoghbi] and her team analyzed gene activity patterns in the brains of mice with a MECP2 deficiency and in mice with a MECP2 duplication (MECP2+). Previous studies had revealed only subtle differences between the brains of normal and MECP2-mutant mice, but those studies measured gene activity throughout the brain. Dr. Zoghbi’s group focused on a brain region called the hypothalamus, which is known to produce hormones that influence growth, mood, and the sleep-wake cycle — all of which typically become derailed in Rett syndrome.

Their analysis revealed nearly 2600 genes that are misregulated in both mouse models, with opposite patterns. The activity of about 2200 genes dropped in MECP2-deficient mice and spiked in MECP2+ mice, indicating that MECP2 is an activator for those genes. About 400 genes showed the reverse pattern, indicating that MECP2 is a repressor for those genes.

In other experiments, the researchers confirmed that the MeCP2 protein binds directly to several of the target genes. They also found evidence that MeCP2 collaborates with another protein known to serve as a gene activator. Among the genes activated by MeCP2, the researchers found many that encode neuropeptides, proteins that are secreted by nerve cells.

Researchers hope to design therapies for Rett syndrome and for MECP2 duplication syndrome by honing in on the MeCP2 target genes (go here to read about the possibility of a genetic test for Rett’s Syndrome).

Charlie used to have the urge to climb and no windowsill, table, back of the couch, dresser, or the top of the piano did not bear the imprint of his bare feet. I was always worried that his next Everest would be the top of the book shelves but he never attempted those (though everything we tried to hide “out of his sight” atop the shelves was found once he (a) grew past 4 feet and (b) learned by watching me that he could drag a chair over and stand on it). This was when he about 5-8 years old; when he was 7 we took him to a climbing wall and he was definitely curious. He was hooked up to a harness and went a couple feet up off the ground, very careful that each foot was stable. And when he’d climbed high enough, he told us, that was enough.

Reading about a climbing facility in the greater Toronto area got me thinking about climbing walls again. There’s a not-too-high one at our YMCA and I’m looking into when Charlie might try it. A little climbing can get you somewhere good………..

We’ve had our problems with school districts and at (low) one point took Charlie out of school and homeschooled him for a month back in the fall of 2005. But things were always pretty local. In Louisiana, the St. Landry School Board is being investigated by the US Department of Education. According to WDSU news:

According to a letter from the office of civil rights, the department is investigating whether the board failed to identify Port Barre Elementary School students who need special education services, failed to evaluate students who qualified for services and failed to provide services for the students once they had been identified.

Concerns about the services provided for students with special needs have crossed into the district’s 43-year-old desegregation case.

The complaint originated with Port Barre resident and child advocate Bett Dedon, who contacted U.S. District Court Judge Tucker Melancon, who oversees the desegregation case, about her grandson’s situation at Port Barre Elementary.

Dedon’s grandson has an autism spectrum disorder.

This is what Dedon’s grandson is entitled to according to IDEA 2004, the Individuals with Education Act:

……..a free appropriate public education that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment, and independent living.

This is how IDEA describes disability at the very start of the document:

“Disability is a natural part of the human experience and in no way diminishes the right of individuals to participate in or contribute to society. Improving educational results for children with disabilities is an essential element of our national policy of ensuring equality of opportunity, full participation, independent living, and economic self-sufficiency for individuals with disabilities.”

Just to reiterate: All children with disabilities need to have “available to them” an education that is free, appropriate and public and their being disabled—autistic—-”in no way diminishes the right of individuals to participate in or contribute to society” in any, many, and so many ways.