In many states (such as Virginia), families of autistic children have been seeking legislation to provide for insurance coverage for treatment (usually ABA therapy) for their children. A recent decision involving insurance coverage for eating disorders in New Jersey might be of interest: As reported in today’s Star-Ledger, Horison—the state’s largest health insurer—has agreed to cover claims stemming from eating disorders. Some 500 patients will receive $1.2 million when their previously denied claims are reprocessed; the decision settled a class action lawsuit brought by parents of children with anorexia.

In a statement, Horizon spokesman Tom Rubino said the company “believes the settlement is in the best interest of all the parties involved and in line with the direction of federal parity for mental health.”

Horizon said some of its policies provide coverage for eating disorders such as anorexia and bulimia but that treatment benefits were limited because they were classified as nonbiological in nature.

“New Jersey law does not identify anorexia and bulimia as biologically based mental illnesses requiring parity benefits,” the statement noted.

Under the terms of the agreement, Horizon will not admit any liability but will provide “parity treatment to eating disorder claims in the future for all current members who are fully insured,” the statement added.

At issue in particular is a debate familiar in discussions about autism: Is–can– anorexia to be defined as a biologically-based disorder? As noted in a previous post on insurance coverage for autism and also anorexia, a 2006 story in Newsweek reported that it’s precisely how anorexia is defined and understood—-as a biological rather than a psychological disorder that has been a crucial issue in getting insurance coverage for treatment. Insurance companies would prefer to define anorexia as caused by “environmental” factors (due to issues in the family, for instance). In the past years, as in the case of autism, there’s been more pointing to genetic causes for anorexia; for a medical and neurological basis for the condition.

Included in the economic bailout bill signed by President Bush last Friday, October 3, was a new law requiring equal coverage of mental and physical illnesses. Go here to read H.R. 1424, SEC. 512. MENTAL HEALTH PARITY, Subtitle B–Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008.

The October 5th New York Times quotes Dr. Steven E. Hyman, a former director of the National Institute of Mental Health, as saying that “it was impossible to justify insurance discrimination when an overwhelming body of scientific evidence showed that ‘mental illnesses represent real diseases of the brain.’” More specifically:

“Genetic mutations and unlucky combinations of normal genes contribute to the risk of autism and schizophrenia…..There is also strong evidence that people with schizophrenia have thinning of the gray matter in parts of the brain that permit us to control our thoughts and behavior.”

The new law will now make is easier for people to get treatment for conditions such as depression, autism, schizophrenia, eating disorders and alcohol and drug abuse. Employments and group health plans have set limits to hospital stays and to the number of outpatient visits for mental health treatments, and insurers have set higher co-payments and deductibles; under the new law, these will restrictions are eliminated.

As Regan noted, a “collateral benefit” to the passage of the bailout bill.

After their now-7-year-old son Ryan was diagnosed with autism 5 years ago, Lorri and Dan Unumb “they sold their house, downsized and sacrificed to cover costs,” an April 1st CNN story reports. Intensive behavior therapy for Ryan costs between $70,000 and $80,000 a year which is lawyer and law professor Lorri Unumb’s “entire salary.” The Unumbs attribute Ryan’s progress to all the therapy he has received. To help other families who could not afford the intensive therapy that Ryan has had, Lorri Unumb

…wrote a bill, recruited other parents to help her lobby state legislators, and two years later, got the bill passed. Known as Ryan’s Bill, it will go into effect as Ryan’s Law in July.

Ryan’s Law mandates that insurance companies provide up to $50,000 a year for behavioral therapy up to the age of 16. It also prohibits insurers from refusing other medical care to children because of their autism. It doesn’t, however, apply to people or companies who are self-insured, such as the Unumbs.

Unumb has been nominated for the Post and Courier’s Award for Public Service.

Behavior therapy has not been covered in the past because insurance companies have seen it as an “educational measure, not a medical one,” as indicated in other comments in the CNN storyfrom Susan Pisano of America’s Health Insurance Plans, a Washington-based association that represents health insurers:

“Traditionally those services have been provided through early intervention programs for children in the 0-3 age group, and by schools for children who are older.”

Pisano says the real issue is one of public policy. “We’re seeing around the country, as the number of children along the autism spectrum is increasing and as budgets are being cut back, we see a move to transfer responsibility for some of the services [from the government] to the health care system.”

But many, if not most, public school districts do not (and perhaps cannot) provide the types of services that parents seek. My son has received plenty of “watered down” therapy and teaching in public school programs who said they knew what they were doing (and clearly did not), and who were strapped for resources and trained staff. With only teaching from public school programs and without the kind of therapy that he responded to best—most privately paid for, with a lot of help from generous relatives—I don’t think my son would be doing as well as he is.

An issue alluded to by Pisano is: What is autism? How is it defined? That is, is autism a medical condition? And if it is, how does one argue that educational therapies can be considered “treatment”? Behavior therapy does not cure a child from autism but it can teach a child many skills.

By way of comparison: Families with a child with anorexia nervosa have faced similar battles with insurance companies to provide treatment. Anorexia is a serious, potentially fatal eating disorder and can require years of treatment. A 2006 story in Newsweek noted that it is precisely how anorexia is defined and understood—as a biological disorder (and more research points to genetic causes for anorexia) or (as the insurance companies would prefer to define it) as one that is caused by “environmental” factors—-that has been a crucial issue in getting insurance coverage for treatment.

Beyond the interpretation of the law, Blue Cross spokesman Thomas Rubino says that while there have been “a number of studies over the years that point to environmental and other factors [as causes of anorexia], there are no studies that have conclusively proven that [anorexia nervosa] is a biologically-based mental illness.”

Leading experts in the field—and even the federal government—however, clearly counter that claim. In a letter to the National Eating Disorders Association last month, Thomas Insel, the director of the National Institute of Mental Health, states that “anorexia nervosa is a brain disease” and while its “symptoms are behavioral” the illness “has a biological core.” The NIMH Web site also lists numerous studies that attest to that statement.

Similarly, there is currently no biological test for autism, which is diagnosed based on behaviors. And, as in treatment for eating disorders, there is a lot that families can do to help their children to get better, and there’s a huge need to make this known.

Back in December, the New York University Child Study Center launched a public awareness advertisement campaign called “Ransom Notes,” in which. The campaign was pulled a few weeks later, in no small part due to the work of disability rights advocacy groups, parents, and many concerned individuals, who questioned the negative portrayal of autism and psychiatric disorders by the “Ransom Notes” campaign. On Tuesday, February 26, 2008 from 11 a.m. - 1 p.m., the NYU Child Study Center is holding an Online Town Hall on Children’s Mental Health. Details can be found here. How can we improve awareness and care of these issues, in ways that do not simply denounce and shame those with conditions like autism, Asperger’s Syndrome, bulimia, OCD, depression?

I have one older sister: When I found out, some 11 years ago, that I was going to have a boy, I panicked to Jim. What am I going to do with a boy!

Jim was easily reassuring—”Don’t worry, you’re going to love him!”—and he parked the car and we went into Schnuck’s to shop for groceries.

That was when we living in a suburb of St. Louis, Missouri, and I was teaching Latin to middle- and high-schoolers at the kind of school where the boys wear blue blazers with brass buttons, and Jim and I were driving around various parts of St. Louis and going to Open Houses. Flash forward to now: We’re still in the suburbs, but in Jim’s native NJ and in a rental condo, and I teach Latin, ancient Greek, and anything and everything about the ancient world, and a student wearing a button-down shirt means he has to rush off to work after his last class.

The boy whose big round head and eyes, whose long, spider-leg fingers, were visible already on the ultrasound had already been given his name, Charlie, and that same boy is my one constant from those days. He is (as all of my relatives exclaimed) clearly taller than I am now, carries his own backpack through the airport, and turns his head at the sound of his name—something he did not really do in the time before he was diagnosed with autism in July of 1999. Life with Charlie is a journey that renders a GPS device useless. We’re constantly finding that the path (such as it is) lies directly through a thickly wooded forest, or straight over or through a misty mountain, or across a chasm with no bridge, no rope, and no magic in sight.

To paraphrase an ancient philosopher, the unexpected life is more than well worth living.

A December 27th article by Seattle Post-Intelligencer reporter Paul Nyhan about his two-year-old daughter reminded me of why life with Charlie, and with autism, is a different life than I had imagined, and a rich and richly rewarding one. Nyhan writes about the “nation’s dysfunctional dialogue with a woman’s body image” and his worries about how our society’s obsessive fascination with women’s bodies, and especially those that are “beautiful,” and thin, is already affecting his toddler daughter. He writes:

My New Year’s resolution is to help my daughter prepare for the mind-numbingly complex, sometimes fictitious image of the female body. Unfortunately, I am out of my element.

Today, involved dads are entering unfamiliar territory, such as body-image anxiety. They want to help, but don’t always know how, says Harvard Medical University researcher Dr. Nancy Etcoff. When Etcoff gives a speech these days, dads ask a lot of the questions.

“They don’t know what to say to their daughters, how to help them,” said Etcoff, who also runs Massachusetts General Hospital’s aesthetics and well-being program. “Right now there is a really troubled body image. It is really hard to feel confident.”

It is also a scary time to raise a daughter. Girls as young as 7 are now treated for anorexia, more than 40 percent of girls in first, second and third grade wish they were thinner, and the number of reported cases of anorexia and bulimia is rising, according to the Seattle-based National Association of Eating Disorders.

As dads take on more at home, they can help their daughters to deal with these problems. For example, when she complains about her weight, don’t dismiss her by saying, “Oh, don’t be silly, you’re beautiful,” Etcoff urges.

Listen. Help her digest the messages she absorbs on YouTube, the E! channel, MTV and ever-growing media outlets.

It’s not that boys don’t have eating disorders (about 10% of those with eating disorders are male, according to some surveys). It is the case that autistic children can have problems—for very different reasons—with eating from neophobia to pica. Nonetheless the worries that seem to be attendant on raising a girl in today’s world—the glut of images of slender young things and cosmetic surgery enhanced celebs at the newsstand and all over the Internet, cyberbullying (as Nyhan points out) on Facebook, MySpace, and who know where else, and the clothing industry and the size 00 jean—are pretty much absent from our life with Charlie. He cares little about what is “in” and fashionable: He has taken a liking to a black Puma t-shirt because it somewhat resembles a black Pittsburgh Pirates t-shirt that Jim has. He carries around his iPod not to be cool but because he likes to have it, and his various other “favorite things” (photos of various family members), close by at all times. He has the “droopy drawers” look because he’s slender at the waist and the elastic tends to dip in the back. He likes what he likes and that’s what he wants and, when I remember my own cluttered adolescence—I had often worn hand-me-downs from my sister and an older cousin with pride, and now these seemed simply so wrong, and I fretted, I worried, I had long black hair—and discomfort, and deep confusion, I feel relieved that Charlie might not have to go through that: Adolescence will come with its new challenges, strain, and problems—the days of carrying and “playtime” are over—-but some of what will be worrying so many other dads and moms will most likely not visit us, the parents of a boy who walks his own path, and who shrugs off “peer pressure.”

Of late, Jim has noted that girls Charlie’s age do a double-take when he walks by them, precisely because he walks by and does not stop and shows no interest in looking at them. The girls turn their heads to see why Charlie is so oblivious (or seems to be): They are looking to be looked at.

I am not the mother of girls; I’ve no real advice but I’ll hazard a thought from my own experience. When I accepted that Charlie was Charlie, that Charlie as he was—struggling so to read, making interesting sounds that might be words on the train, writing his name and then handing me the pencil and saying “yay”—-it was the start of a change. A change not so much in Charlie as in myself, and in our relationship; Charlie, I think, could sense that I was giving up the struggle that he be a certain way, that I was coming to understanding him as himself—with the rumpled black t-shirt and jeans, fleece hood pulled so far over his head that his face cannot at all be seen, and my scribbled on and thoroughly stained laptop case under his arm (Charlie took the case for his iPod and other treasures). I saw that Charlie was most unlike me and yet most similar, and I was glad for it.

I’m glad to be the mother of my boy.

Rescue me: That is the essence of the message of the “Ransom Notes” “public awareness campaign” that the New York University Child Study Center is launching. I’ve noted the use of shocking and alarmist language in the ads, which feature fictional “ransom notes,” with the captors being “untreated psychiatric disorders,” including autism, Asperger Syndrome, bulimia, depression, ADHD, and obsessive-compulsive disorder. The image of these conditions as kidnappers, abductors, criminals—normal child snatchers—who have gotten hold of our children is troubling and, further, harmful and offensive—and many autistic self-advocates and parents have been blogging about why:

• Action for Autism
• Crimson Thoughts
• Autista
• Whose Planet Is It Anyways
• Vickie Forman
• Mom-NOS (with a love letter)
• Asperger Square 8
• Mother of Shrek
• Autism Street
• Susan Senator
• stop.think.autism
• Abnormal Diversity
• Blog from the Windowsill
• My Thoughts On….
• From Here to There and Back
• Embracing the Chaos
• A Day in the Life
• Momformation
• Resilient Mom
• Krista’s Thoughts
• Fertility Notes
• The McElroy Chronicles
• Chaotic Idealism

(If you have written a post about the Ransom Notes campaign that is not listed here, I’d appreciate it if you might leave a link in the comments section; thank you.)

My concern about the NYU Center’s Ransom Notes campaign is twofold. First, with its imagery of a child “captured” by some devious creature (autism, ADHD, etc.), the campaign revives outmoded ideas about these sorts of conditions.

The “Ransom Note” campaign draws in part on the myth of the changeling, in which a human child was said to have been snatched from its cradle by trolls and replaced with an ugly, deformed, creature. This troll-child, the changeling, is a disabled child. While I don’t think that parents today always knowingly invoke this folk story when they refer to their autistic child as once normal and now “lost”; references to autistic children as an “empty shell” do suggest this notion of the changeling, of a child stolen away and a deformed being left in her or his place.

Second, while there is no question that the NYU Center seeks to help and support children with issues that more than need addressing, and to assist their families, I as a parent of an autistic child, a disability rights advocate, and an educator and academic, am greatly concerned about the misconceptions, misunderstanding, and limited perspective that the “Ransom Notes” campaign promotes. The notion that a child’s true and actual, normal self has been stolen away by some disorder (autism) is harmful to how other people perceive and treat my autistic son. The image of autism promoted by the “Ransom Notes” campaign is purely negative and can only result in people seeing autism in general and my autistic son in particular in a highly negative light.

This is a “public awareness” campaign that makes the public aware only of one very dark aspect of being an autistic person and of raising an autistic child. Spend a day in our household and, while you will witness more than a few moments of anxiety, fretfulness, and a bit of noise, I hope you might most of all sense my son’s limitless desire to do his best, to struggle through his worries, and to smile and speak in half-echoed snatches of phrases—-his patience and his constant efforts to try and try harder. I hope you might most of all sense what Jim and I feel always for Charlie and our small family, unconditional love, faith in each other, and effervescent hope.

It is not a household that Charlie, or Jim or I, feel at all in need of being rescued from.

This is the full text of a letter by Ari Ne’eman, President of the Autistic Self-Advocacy Network. If you would like to add your name to the letter, please send an email to Ari Ne’eman.

To the NYU Child Study Center and the supporters of the “Ransom Notes” advertising campaign:

We, the undersigned organizations, are writing to you regarding your new ad campaign for the NYU Child Study Center: “Ransom Notes”. Our organizations represent people with a wide range of disabilities, including those portrayed in your campaign, as well as family members, professionals and others whose lives are affected by disabilities. As people who live and work with disability, we cannot help but be concerned by the way your campaign depicts individuals with disabilities. By choosing to portray people on the autism spectrum as well as those living with OCD, ADHD and other disabilities as kidnapped or possessed children, you have inadvertently reinforced many of the worst stereotypes that have prevented children and adults with disabilities from gaining inclusion, equality and full access to the services and supports they require.

While the “Ransom Notes” campaign was no doubt a well-intentioned effort to increase awareness and thus support for the disabilities it describes, the means through which it attempts this have the opposite effect. When a child with ADHD is described as “a detriment to himself and those around him,” it hurts the efforts of individuals, parents and families to ensure inclusion of students with learning disabilities in the same classrooms as their peers. When individuals with diagnoses of autism and Asperger’s Syndrome are told that their capacities for social interaction and independent living are completely destroyed, it deeply offends the many adults of these neurologies who have succeeded in living independent lives, forming social relationships and achieving personal, financial and social success. While it is true that there are many difficulties associated with the disabilities you describe, many individuals with those diagnostic categories do succeed – not necessarily by becoming indistinguishable from their non-disabled peers, but by finding ways to maximize their unique abilities and potential on their own terms.

It is important to point out that while the Center has promoted this campaign under the tag line, “Don’t let a psychiatric disorder take your child,” several of the disabilities described by the campaign are neurological rather than psychiatric. The implication that autism and Asperger’s Syndrome are psychiatric conditions rather than neurological ones, combined with the implicit threat that the kidnapping note sends to parents (“Ignore this and your kid will pay”), calls to mind the damaging “refrigerator mother” theory popularized by Dr. Bruno Bettelheim over thirty-five years ago. The stigma and misinformation that resulted from Dr. Bettelheim’s mistaken assertion that bad mothers were the cause of autism drove parents away from seeking diagnostic services and appropriate educational interventions for their children. Like Bettelheim, the “Ransom Notes” campaign places a stigma on both parents and children, thus discouraging them from pursuing a diagnosis that might have been helpful in gaining access to the appropriate services, supports and educational tools. The autism spectrum should be recognized for what it is: a lifelong neurological condition – not a kidnapper that steals children in the dead of the night.

Furthermore, the use of kidnapping as an analogy for any of the disabilities depicted in the campaign is highly inappropriate, regardless of the origin of the conditions involved. It is true that diagnoses of ADHD, autism, Asperger’s Syndrome and OCD often accompany great hardships for families. It is true that depression and bulimia are terrible disorders that require treatment. Yet, the way you choose to convey those messages is inappropriate and counterproductive. Individuals with disabilities are not replacements for normal children that are stolen away by the disability in question. They are whole people, deserving of the same rights, respect and dignity afforded their peers. Too often, the idea that children with disabilities are less than human lies at the heart of horrific crimes committed against them. The tragic instances of murder and infanticide against people on the autism spectrum and with other developmental disabilities are linked with the perception that these people are less than human. We – the adults, families, professionals and others affected by these conditions - assert that nothing could be further from the truth.

We are also concerned that the negative stereotypes the “Ransom Notes” campaign depicts could make it harder for the many people with disabilities and their family members who are working to ensure that students with disabilities have the right to be included in their home schools while still receiving all necessary services. Federal law mandates that students with disabilities have the right to a “free and appropriate public education” in the “least restrictive environment”. Your advertising campaign claims that children with disabilities could be a detriment to those around them and as a result hurts the efforts of parents working to secure the opportunity for their children to be included with their peers.

While we recognize and applaud the good intentions intended by this effort, we must urge you to withdraw this campaign immediately, as it threatens to harm the very people whom it seeks to benefit: people with disabilities, their families and their supporters. In the press release announcing this campaign, the Center gave as one of its goals “eliminating the stigma of being or having a child with a psychiatric disorder”. While we may disagree with the Center’s choice of labels, we are in full agreement with the goal of eliminating stigma against people with disabilities and their families. This campaign serves to increase that stigma rather than lessen it. We hope that you will heed our concerns and those of many other people with disabilities, family members, professionals and countless others and end the “Ransom Notes” advertising campaign.

Please do not to hesitate to contact any of the organizations listed as signatories to this letter in order to better solicit the opinions of the disability community prior to your next advertising campaign. We would be more than glad to help the Center to develop better strategies to achieve its excellent goals. The NYU Child Study Center has the potential to do enormous good for children and families affected by disability. By showing that the Center respects the views of people with disabilities, families and professionals, you can make that aspiration a reality.

Sincerely,

Ari Ne’eman
Founding President
The Autistic Self Advocacy Network

“Le packing” is a treatment for autistic children used in France where, the August 25th Lancet notes, it is causing an “outcry.”

“Outcry” strikes me as a bit of an understatement, personally speaking: When I hear the word “packing,” the associations that come to mind are about sending some not welcome person “packing,” or about a certain industry involving meat, and keeping it refrigerated.

“Le packing” involves something similar. According to The Lancet (with some editorial comments by me):

The therapy, called packing, involves wrapping a child tightly in wet sheets that have been placed in the refrigerator for up to an hour. When children are encased in this damp cocoon—with only their head left free—-psychiatrically trained staff talk to them about their feelings. [I'm presuming this means that the staff get the children to talk about the children's own feelings though the sentence reads as if the staff talk to the children about the staff's own feelings] Typically, the treatment is repeated several times a week, and depending on the results and the severity of the child’s condition, it can continue for months or even years.

“Months or even years”?

“Le packing,” it seems, is not only being practiced on autistic children, but is being studied to see if it is effective. (Just from reading about what “le packing” involves, I will venture to say that I am not sure why it is being studied, much less put to use, at all.)

The man who pioneered packing for children, Pierre Delion, is head of the child and adolescent psychiatry unit at Lille Regional University Hospital in northern France. He says that it reinforces childrens’ consciousness of their bodily limits, which in some psychiatric conditions becomes fragmented. He recommends that the technique be used for three types of patient: severely autistic children who self-harm; psychotic children; and, more rarely, children with anorexia. Referring to the first category, he has written: “In our experience of packing, self-harming behaviour very often disappears.”

Well, if one is wrapped in wet and cold sheets, perhaps one might become numb—lose bodily sensations—stop moving…..

The Lancet continues:

Forms of wrapping or envelopment—for example, in mud or clay—have been used therapeutically for centuries. The idea of using it to calm violent patients was conceived in Germany in the 19th century, and packing was routinely applied at Chestnut Lodge—-an asylum in Rockville, Maryland—in the 1950s.

A decade later, American psychiatrist Michael Woodbury brought it to France, where it was embraced by the influential psychoanalytic movement, whose founder was Sigmund Freud. Psychoanalysts found that Woodbury’s philosophy dovetailed with ideas they had about children’s development [my emphasis]. One psychoanalytic theory holds, for example, that packing can help children to dismantle the defensive behaviours they developed at an early age, to protect themselves from a dysfunctional relationship with their mother.

“Psychoanalysts found that Woodbury’s philosophy dovetailed with ideas they had about children’s development”: Was the idea for “le packing” devised because psychoanalysts in France found that the procedure fit with their theories, but not necessarily with an actual child’s experience? Is this a case of “theory” that turns into “practise” that sounds more than a little like “torture” to me?

Views from France about “le packing” can be read on this Forum Autisme.

“Is anorexia the female Asperger’s?” asks Janet Treasure, Professor of Psychiatry at King’s College, London, and head of the Eating Disorders Unit at the South London and Maudsley NHS Trust, in the August 17th Times Online. Noting that “we now realise is that we need to be looking at underlying neural networks in the brain – how patterns of information are processed, how this affects both behaviour and the way an individual reacts to her environment, and why this goes wrong,” she notes these similarities:

1. A “distorted pattern of processing information”: Treasure notes that those with eating disorders find it difficult “to change self-set rules and learnt behaviour once fixed in the brain” and “see the world in close-up detail,” and perhaps ” at the cost of having an ability to see and think about self-identity and connections with others without getting lost in the details.”
2. Obsessive-compulsive disorder or overperfectionism.
3. “Cognitive inflexibility” or difficulties in “set shifting”—in the capacity to “shift back and forth between different tasks or mindsets”
4. Weak central coherence, which Treasure defines as “as a bias towards the local processing of information rather than placing it into a broader context”

The similiarities between anorexia and Asperger’s that Treasure ntoes seem to emphasize obsessiveness on and even a preference for certain (small) things, and also a difficulty with “switching” one’s brain and focus from activity to activity—though, there is much more to autism than these, such as different sensory processing, and difficulties in using and understanding language.

At the basis of Treasure’s theory about anorexia as “the female Asperger’s” is a belief that anorexia is genetic: Not too long ago, the conventional view was that one “got” an eating disorder from strictly cultural factors, such as society’s pressure on women to be thin and the (misguided) equating of beauty with thinness. The view that anorexia and eating disorders are genetic—as discussed in a 2005 Newsweek article on the biology of anorexia—is regarded with controversy. Somewhat in contrast, the belief that autism is genetic has been regarded as more of a “conventional” view, while those who champion the view that autism is caused by an environmental or other external factor see themselves as promoting a novel theory of autism. (Of course, cultural factors—such as bad parenting—were wrongly considered a cause of autism in the past.)

Interestingly, a study Treasure cites found not only that (1) the same kind of “weak central coherence” in those with anorexia as in those with autism and Asperger’s, but also that (2) that “more than 20 per cent of the anorexic group could be described as having a disorder from within the autism spectrum.” I am curious as to what criteria to define “a disorder from within the autism spectrum” are being looked at. And, in her article, Treasure does not specifically cite any girls or women with Asperger’s, though it seems that they ought to be included in any discussion of the “female Asperger’s”—whether autism is different in girls being itself a topic that more and more research is turning to.

A 6-year-old boy in the UK is the youngest person to be treated for anorexia. MetroDad at Babble writes:

According to an article from the UK’s Evening Standard, a study released today reveals that a six-year-old is the youngest boy to be treated for anorexia. The NHS study shows that in 2003, UK hospitals made 93 admissions of boys under 10 with eating problems, compared with 21 admissions of girls. While most of the girls were treated for eating disorders that were similar to those encountered by their older counterparts, the young boys were more likely to be suffering from selective eating, where they will only eat a very narrow range of foods.

From the time he was two years old, six-year-old Nicholas Pilcher ate nothing but cheese spread (Daieylea) for four years. While “sucessfully” treated at the Great Ormond Street Hospital, Nicholas (who is no 15) still has difficulties with eating and “struggleses to eat vegetables and eats soft cheese on all his sandwiches.” The Evening Standard also notes:

Dr Jon Goldin, a consultant child psychiatrist at Great Ormond Street Hospital, said: “There is a whole range of eating disorders that young children suffer from, including compulsive overeating, food phobias or fear of swallowing, and refusing to eat.

“Young boys are more likely to be suffering from selective eating, where they will only eat a very narrow range of foods.

“You do rarely get some who have the problem into adulthood.”

The statistics show that in 2003 hospitals made 93 admissions of boys under 10 with eating problems, compared with 21 admissions of girls. The number of individuals may be lower, with some children having multiple admissions.

A lot autistic children are picky eaters and seem to live on one or two foods (chicken nuggets, macaroni and cheese). My own son eats a wide range of foods, thanks to a lot of teaching and coaxing and encouraging, though he often tends to want to eat only a limited number of things. I am not saying, of course, that autistic kids who are selective eaters have anorexia. While Malcolm Pilcher, Nicholas’ father, says that “‘We never got a conclusion on why he ate the way he did,’” I wonder what possible causes doctors and medical professionals might have considered.

Being a parent whose child takes psychatric medications—-Risperdal and Zoloft—-my sense of righteous indignation came quickly to the fore on reading an article in today’s New York Times about how “financial relationships between doctors and drug makers correspond to the growing use of atypicals [antipsychotics] in children.” Noting that Risperdal, Seroquel, Zyprexa, Abilify and Geodon are now being prescribed to a half-million children in the US for behavior problems, the New York Times analyzed data from Minnesota, which is the only state requiring “public reports of all drug company marketing payments to doctors”:

From 2000 to 2005, drug maker payments to Minnesota psychiatrists rose more than sixfold, to $1.6 million. During those same years, prescriptions of antipsychotics for children in Minnesota’s Medicaid program rose more than ninefold.

Those who took the most money from makers of atypicals tended to prescribe the drugs to children the most often, the data suggest. On average, Minnesota psychiatrists who received at least $5,000 from atypical makers from 2000 to 2005 appear to have written three times as many atypical prescriptions for children as psychiatrists who received less or no money.

……….

But studies present strong evidence that financial interests can affect decisions, often without people knowing it.

I am not suggesting in any way that this sort of questionable financial relationship between drug makers and doctors has anything to do with the medications prescribed for Charlie by his pediatric neurologist, a compassionate man whom we have known for a long time and with whom we communicate well. Charlie takes Risperdal to help him deal with aggressiveness and self-injurious behavior; he takes the Zoloft for anxiety (and there is a link between the anxiety and the behaviors, with the former often preceding the latter). When our doctor first prescribed these medications, he looked at us sternly and said words to the effect of, “But you have to use these in conjunction with a solid educational program. The medicine is only part of it.” Indeed: The medication helps a lot (as we know from attempts to lessen the dosage or to take Charlie off of it), but we have also spent the past two years teaching Charlie how to recognize and communicate his own anxiety (such as asking for a break). This has proved successful by Charlie’s continued long string of peaceful easy-feeling days, despite changes and worries around him (my parents visiting and departing; Charlie’s other grandparents being sick and their usual live-in nurse going on vacation and someone new substituting).

This is all to say, I do not think it would have been right only to give Charlie medication without trying to teach him how to learn other ways of coping with his anxiety and the behaviors he has tended to do when anxious. The New York Times article opens with the story of Anya Bailey who, when she developed an eating disorder after her 12th birthday, was prescribed Risperdal, which is

…… not approved to treat eating disorders, but increased appetite is a common side effect and doctors may prescribe drugs as they see fit. Anya gained weight but within two years developed a crippling knot in her back. She now receives regular injections of Botox to unclench her back muscles. She often awakens crying in pain.

Isabella Bailey, Anya’s mother, said she had no idea that children might be especially susceptible to Risperdal’s side effects. Nor did she know that Risperdal and similar medicines were not approved at the time to treat children, or that medical trials often cited to justify the use of such drugs had as few as eight children taking the drug by the end.

Just as surprising, Ms. Bailey said, was learning that the university psychiatrist who supervised Anya’s care received more than $7,000 from 2003 to 2004 from Johnson & Johnson, Risperdal’s maker, in return for lectures about one of the company’s drugs.

When questioned about why Risperdal was prescribed for Anya Bailey, Dr. George M. Realmuto, a psychiatrist at the University of Minnesota, said that

he did not remember Anya’s case, but speaking generally he defended his unapproved use of Risperdal to counter an eating disorder despite the drug’s risks. “When things are dangerous, you use extraordinary measures,” he said.

Yes, true; in Charlie’s case, we chose to start giving him medication because his behaviors were interfering completely with his learning and were increasing in severity and quantity. Again, this was done while putting into place educational and therapeutic programs to teach Charlie to cope; there are certainly programs (such as the Maudsley approach as well as behavioral treatment) to help someone with an eating disorder get better. The New York Times does not indicate what sort of therapeutic program Anya was in, or whether such was used in conjunction with the medication. It also does not seem that her family was sufficiently warned about the side-effects of Risperdal (our neurologist was very careful to discuss the increasing appetite and tardive dyskinesia, which Anya now has, with us).

I suppose it is stories like Psychiatrists, Children and Drug Industry’s Role in the New York Times that make me wary of the notion of a “magic pill.” When things are dangerous, every last side-effect, evey last detail, every other option, needs to be considered.