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.

An expecting mother wrote this yesterday on BabyCenter:

…..more than anything else that could go wrong with this pregnancy, I am more worried about my child having autism than anything else in the world.

These causes, many reported by the popular media, and without valid evidence to back them up, are listed:

- Vaccines, especially with thermisol, the kid getting them all at once (flu shot, MMR)

- Smelling cleaning products while pregnant (Lysol, etc.)

- Advanced maternal age

- Having autism in your family

- Heat, hot baths, hot showers

- Worrying and stressing

- Rainy climates

The UC M.I.N.D. Institute’s MARBLES (rs of Autism Risk in Babies—Learning Early Signs) seems to be referred to, though I don’t think the “smelling” of cleaning products during pregnancy is specifically mentioned. The study linking rainy climates to autism rates is noted—a study about which there’s doubt as to “whether the paper deserved to be published and reported,” as stated in the Times Online. Older parents, fathers as well as mothers, have been linked to autism, and there’s a number of studies for genetics, for autism being “in the family.”

But “worrying” and “stressing” and hot showers and baths?

Will we next be hearing about whether worrying about autism be linked to causing autism?

Yes, the numerous claims that vaccines can be linked to autism have been gnawing away at the fears of parents-to-be even though vaccinations do not cause autism.

Hope that the expecting mother on BabyCenter might, instead of fearing autism, learn about it, learn that there’s a lot that you can do to help a child, and know that life raising an autistic child—-life raising a child—-isn’t what the popular media makes it out to be. It may be a different parenting adventure than one might think—for us, for sure, it’s been full of much that’s unexpected, and more goodness and love than I could ever have bargained for.

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?

What goes around, comes around.

1952. The DSM-I says this about “000-x28 Schizophrenic reaction, childhood type”:

Here will be classified those schizophrenic reactions occurring before puberty. The clinical picture may differ from schizophrenic reactions occurring in other age periods because of the immaturity and plasticity of the patient at the time of onset of the reaction. Psychotic reactions in children, manifesting primarily autism, will be classified here. [via Unstrange.com; my emphases]

And in 1968, in the DSM-II, here is the definition of “295.8 Schizophrenia, childhood type”:

This category is for cases in which schizophrenic symptoms appear before puberty. The condition may be manifested by autistic, atypical and withdrawn behavior; failure to develop identity separate from the mother’s; and general unevenness, gross immaturity and inadequacy of development. These developmental defects may result in mental retardation, which should also be diagnosed.[via Unstrange.com; my emphases]

Before autism was “autism” as we talk about it today, and before there was such a thing as “autism spectrum disorder,” autism was “childhood schizophrenia.” Now bring up autism and schizophrenia in the same conversation and you’ll get a heated response. Back in February, Dr. Nancy Minshew, Director of the University of Pittsburgh’s Center for Excellence in Autism Research, was quoted in the Pittsburgh Post-Gazette as saying that, in the past, some autistic children may have been mislabeled as schizophrenic, and placed in state hospitals or institutions; some (mis)interpreted her comments as somehow as suggesting that autistic children were schizophrenic, when Dr. Minshew was noting the differences in how we once classified and spoke about autism, in contrast to how we do today. Drawing on a new theory about autism and genetics, a November article suggested that autism and schizophrenia are the same disease.

A review of the research literature by developmental psychologist Annemie Ploeger suggests that autism and schizophrenia share a common origin. The review is from Ploeger’s doctoral thesis, “Towards an integration of evolutionary psychology and developmental science: New insights from evolutionary developmental biology” and is summarized in the December 16th Science Daily. Ploeger looked at whether there was a connection between autism and schizophrenia by focusing on the first month of pregnancy. She noted certain “physical abnormalities” in autistic children: “protruding ears,” “peculiar toes,” “a large head and intestinal problems.”

Ploeger’s research reveals that in the period between 20 and 40 days after fertilisation, the embryo is highly susceptible to disruptions. In this period, early organogenesis, there is a lot of interaction between the different parts of the body. If something goes wrong with a given part of the body, it greatly influences the development of other parts of the body. As people with schizophrenia and autism frequently have physical abnormalities to body parts formed during early organogenesis, Ploeger concluded that the foundation for these psychiatric disorders is laid very early during pregnancy.

The existence of a relationship between unhealthy behaviour during pregnancy and the subsequent development of schizophrenia and autism in the child was already known. However, Ploeger’s hypothesis that the early organogenesis stage is the most critical, is new. Ploeger bases her hypothesis on an extensive study of scientific literature in this area. She often had to make use of related studies; although a lot of research has been done into prenatal influences on the development of schizophrenia and autism, little is known about the influence that the period between 20 to 40 days after fertilisation has.

From this description, it’s not clear what sort of factors—the mother’s genetic make-up; any environmental agents—are seen as having an effect of early organogenesis, though “unhealthy behavior during pregnancy” of course suggests that the mother’s activities and behaviors are particularly under consideration here. Ploeger also notes that some women who took Softenon for morning sickness in the 1960s and 1970s gave birth to severely disabled children, as a result of taking the medicine: “Autistic children were born in four percent of pregnancies in which softenon was used, whereas normally this figure is 0.1 percent.”

This study, along with another noted on Monday about paternal age and children’s health, is focusing on how parents’ behaviors and decision (taking certain medications, having a child when one is older) can possibly have an impact on a child being autistic or not; on a child being “healthy” or not—-I’ll end by noting that I, and some other friends who have autistic children, followed all the recommendations about “how to have a healthy pregnancy” exactingly, and our husbands were younger than 40.

What comes around, comes around.

The Prenatally and Postnatally Diagnosed Conditions Awareness Act, also known as the Kennedy-Brownback bill, authorizes the use of federal funds to train doctors to inform parents about Down syndrome or other prenatally and postnatally diagnosed conditions with up-to-date information on child development and life expectancy. If funded at the recommended $25 million over five years, the bill would provide for referral networks, to connect parents who’ve recently received a diagnosis with parents of older children, as reported in today’s Eagle Tribune (North Andover). Dr. Brian Skotko of Children’s Hospital Boston—who has a nephew with Down syndrome—published a study of the results from a survey of more than 1,000 mothers (2005):

The central question was about how medical support could be improved for mothers who received a Down syndrome diagnosis for their children.

The women came from five states, including Massachusetts. Regardless of the region, they reported feeling frightened or anxious after receiving the diagnosis, and also feeling shocked, angry and depressed.

About half of the women said doctors talked about or emphasized negative aspects: that almost 50 percent of children with Down syndrome will need heart surgery; that they will need to see a specialist for their condition; and that they will need speech or physical therapy.

But that’s far from the whole story, Skotko said. Today, surgery, treatment and therapy are readily available and often successful. And a recent study showed life expectancy for people with Down syndrome doubled between 1983 and 1997, going from 25 to about 50 years old.

Also, children diagnosed with Down syndrome are routinely mainstreamed in public schools, Skotko said. And they are scoring higher on standardized tests. Many of them even work and live on their own.

With tests to identify autism in younger and younger children being developed—and even the possibility of prenatal genetic testing for autism someday—getting information early on, and hopeful information (like the growing acceptance and understanding of Down Synrome) can indeed make a difference.

When Charlie was formally diagnosed with autism in July of 1999, “autism” seemed like something strange and puzzling and (to be very honest) unfathomable to me. I didn’t know anything about it, and I didn’t understand why it was necessary to apply such a “label” onto my toddler.

Nine years later, and not only do I know a great deal more about autism (with much more still to learn). It seems that people in general know a lot more autism, or are at least familiar with the word; it’s been some time since I said “autistic” and someone said back to me, “You mean he’s artistic?”.

At 10 months, Charlie’s then-pediatrician noticed that he had a “minor gross delay”: He’d just started rolling over at 9 months and, too, just started to sit independently. He had other gross motor delays and, taken on their own, these didn’t, and don’t, add up to an autism diagnosis. But Charlie, as I realize in thoughtful hindsight, did not display joint attention. He loved to be carried and held and smiled; he tended to stay put in one spot. Now, every time I read about some researcher’s latest new method for identifying autism in infants, I wonder, what would such a test have noted about Charlie? And I as often think, it’s likely they would have noted “something” about Charlie—-that, today, he might have been diagnosed at an even younger age; researchers are, indeed, evaluating the accuracy of autism screening tools for children 18–24 months of age.

A study in the December Archives of Pediatrics and General Medicine examines autism prevalence trends over time in Denmark and states that “the apparent increase in autism in recent years is in part attributable to a decrease over time in the age at diagnosis.” A cohort of more than 400,000 children—all children born in Denmark from January 1, 1994, through December 31, 1999—were studied. From the abstract:

Results Statistically significant shifts in age at diagnosis were observed for autism spectrum disorder; children diagnosed before age 9 years in the cohorts born between January 1, 1994, and December 31, 1995, between January 1, 1996, and December 31, 1997, and between January 1, 1998, and December 31, 1999, were on average diagnosed at ages 5.9 (95% confidence interval [CI], 5.8-6.0), 5.8 (95% CI, 5.7-5.9), and 5.3 (95% CI, 5.2-5.4) years, respectively. The relative risk comparing the 1996-1997 birth cohort with the 1994-1995 birth cohort at age 3 years was 1.20 (95% CI, 0.86-1.67), which decreased to 1.10 (95% CI, 1.00-1.20) at age 11 years. Similarly, the relative risk comparing the 1998-1999 birth cohort with the 1994-1995 birth cohort at age 3 years was 1.69 (95% CI, 1.24-2.31), which decreased to 1.23 (95% CI, 1.11-1.37) at age 11 years. Similar results were observed for childhood autism.

Conclusions Shifts in age at diagnosis inflated the observed prevalence of autism in young children in the more recent cohorts compared with the oldest cohort. This study supports the argument that the apparent increase in autism in recent years is at least in part attributable to decreases in the age at diagnosis over time.

When Charlie was just diagnosed and shortly after (in 1999-2000), we were often told that he—he was 2-3 years old then—was “very young” to be diagnosed. Now, it seems standard for children to be diagnosed by the time they’re the age Charlie was when he was diagnosed with autism back in 1999. It seems more than obvious to me that we would have been told that they were seeing “red flags” about, who knows, 6-month-old Charlie’s development, and we would have started out on the road to a diagnosis even earlier than we did. A summary of the articles in the December Archives of Pediatrics and General Medicine displays two graphs, which show that, between the two birth cohorts studied (one from 1994-1995 and the other from 1998-1999), the age of a child at the time of autism diagnosis decreased, even as the prevalence rate has been increasing.

Again, the authors of the study note that it’s possible that “the apparent increase in autism in recent years is at least in part attributable to decreases in the age at diagnosis over time.” Thus, early detection and diagnosis of autism—-and increasingly earlier detection and diagnosis, at that—are, it can be argued, contributing to the increase in the prevalence rate of autism. Our ability to better diagnosis autism isenabling us to identify autism earlier in younger children and this is a contributing factor to the rise in autism cases. There’s not so much an “autism epidemic” occurring, as that our knowledge about autism is growing and will, it seems and I hope, continue to.

The UC Davis-M.I.N.D. Institute’s MARBLES study ( Markers of Autism Risk in Babies’ Learning Early Signs) is following some 100 women who have a biological autistic child and who are pregnant, or who are planning on becoming pregnant, to investigate possible biological and environmental agents that children are exposed to prenatally and post-partum. It seems that maternal health during pregnancy—what expecting mothers do or do not do—will remain an area of scrutiny in the search for autism’s causes: A study published in the December Neurology shows that children whose mothers took Epilim, an anti-epileptic drug, during pregnancy were seven times more likely to develop autism, as compared with children whose mothers did not take such a drug, as reported in Reuters. Epilim is known generically as Valproate and is sold as Depakene in the US. Previous studies have reported an association between fetal valproate syndrome and autism.

Autistic children responded to sounds one-fiftieth of a second slower than a group of non-autistic children in research conducted at Children’s Hospital of Philadelphia. 64 autistic children aged 6 to 15 listened to a series of rapid beeps through headphones while wearing a helmet-like device. The device recorded their brain’s response to the sounds and their brain waves were then compared with responses in a group of non-autistic children. From the Associated Press via First Coast News:

“We tend to speak at four syllables per second,” said Timothy Roberts, the study’s lead author and the hospital’s vice chairman of research. If an autistic brain “is slow in processing a change in a syllable … it could easily get to the point of being overloaded.”

Researchers now need to test these preliminary findings on younger children, and hope that their technique—-which use noninvasive technology called magnetoencephalography (MEG)—might be used to diagnosed children as young as 1 with autism. The results of the study will be reported tomorrow at the Radiological Society of North America meeting in Chicago.

Other methods currently being developed to diagnose autism in very young (1 year and under) children involve studying babies’ eye movements and eye tracking; looking at whether a toddler focuses on another person’s mouth and eyes, and assymetry in infants.

Auditory processing delay is something that Charlie has had all along. When he was a year and two years old, I wasn’t yet able to understand how not being able to “process” sounds did not mean that he had a hearing disability. While he seems to hear everything, his responses are different and, indeed, often delayed.  How might the new method being developed distinguish between a child who might be autistic and a child with a hearing problem?

A new national strategy for screening for Down syndrome in Denmark has halved the number of Down Syndrome births and led to a 30% increase in infants diagnosed with the condition. The Danish National Board of Health issued guidelines for prenatal screening and diagnosis for Down Syndrome in 2004; these guidelines (from Science Daily)

included the offer of a combined test for Down Syndrome (based on combination of maternal age, plus serum and nuchal screening) in the first trimester. This test gave women a risk assessment for Down Syndrome at an early stage in the pregnancy. Women whose risk was higher than a defined cut off were referred for invasive diagnostic tests (chorionic villus sampling or amniocentesis).

The study is published in the November 27th British Medical Journal.It was recently reported that births of children with Down Syndrome are increasing in the UK. While most women who receive a prenatal diagnosis of Down Syndrome still choose not to have the child, more are now deciding to.

Carol Boys, chief executive of the [Down's Syndrome Association], had not expected the rise in Down’s syndrome births. “It seems to show that more parents are thinking more carefully before opting for prenatal screening and termination – that being born with Down’s syndrome is being seen in a different light today,” she says on the programme.

Substitute “autism” for “Down Syndrome” in this post—-consider the increasingly widespread use of genetic testing even for things like what sport a 2 1/2-year-old should start to train for—and you know we’ve got some seriously difficult questions ahead of us.

MARBLES stands for Markers of Autism Risk in Babies—Learning Early Signs. The study investigates “biological and environmental triggers that children are exposed to prenatally and post-partum”: Some 100 women who have a biological autistic child and who are pregnant, or who are planning on becoming pregnant, are participating in MARBLES, which began in 2006. Researchers from the UC Davis-M.I.N.D. Institute are collecting blood, urine, hair, saliva, and breast milk (if the mother is breast feeding), as well as dust from participants’ houses, and mothers are interviewed and medical records examined. It’s noted that MARBLES is “unique” because

follows mothers before, during, and after their pregnancies, allowing us to obtain information about the pre-natal and post-natal environment to which the baby is exposed.? By gathering information in real-time we increase the accuracy of the information collected and will be able to better understand and observe the biological and behavioral changes that may occur in the mother and/or baby throughout the pregnancy and early childhood period.

The November 22nd InsideBayArea opens by suggesting that people’s homes “might reveal clues for solving one of the biggest mysteries of modern medicine: the cause of a rapid rise in autistic children.” Besides collecting dust with a “special vaccuum,” researchers are also noting what household cleaners soaps, beauty products, electronics, and types of paint, each family uses. And, when Danielle Bell of Danville—whose almost 4-year-old son Jake is autistic—had her now 8-month-old daughter, Layla, researchers were present and “took for laboratory analysis the umbilical cord, a portion of the placenta and what is known as meconium, or the baby’s first bowel movement.”

In the search for a cause, for some of us, it could be said that our homes indeed contain “clues” about autism, in our very selves, in our genes, and not so much is to be revealed by analyzin the dust or the types household cleaning products.

Aside from discovering our housekeeping habits……..