Happy 2009!

We’re leaving tonight on the red-eye to go back from the Bay Area to New Jersey so, in the interest of being able to spend more time in the California sunshine with my guys and my parents, and since it is, indeed, 2009, a few more highlights from 2008.

August means one thing in my household—-two weeks at the beach, at the Jersey Shore. Not surprisingly, it was still impossible to avoid talk about vaccines. A new clinical trial of the GFCF diet was announced. While people have strong disagreements about the “right” of parents to vaccinate or not, everyone agreed that the use of “retard” in the movie Tropic Thunder was unncessary.

Charlie started middle school in September and, by October, he was deep into middle school blues, and Jim and I found ourselves back into the old familiar advocacy mode, including meetings with teachers present and past, Charlie’s case manager, ABA consultants, school district administrators (but not, yet, “legal counsel” of the sort this family in Montgomery County (Virginia) has had to take).

Also in September: A 13-year-old autistic boy treaded water for 15 hours off the coast of Volusia County in Florida, until he was found the next day.

Another study showed that the MMR vaccine does not cause autism.

And, with Election Day nearing, the choice of Alaska governor Sarah Palin—whose youngest son, Trig, has Down Syndrome—-as Senator John McCain’s running mate got the (Special Needs) Mommy Wars going again.

In October, I (former warrior mom that I am) was on a Science Blogs book club panel writing about a newly published book, I get a lot of hate mail”: Autism’s False Prophets by Paul Offit. (And I’ve not been feeling that I need beware Jenny McCarthy and her so-called angry mom-mob; I know that someone’s watching over me.)

More to the point than “debates” about vaccines and autism was the passage of the mental health parity bill.

And then, in the middle of October, was the McCain-Obama debate in which McCain apparently confused Down Syndrome and autism, and after which I was interviwed on Newsweek about the candidates.

Around the same time, Denis Leary did a Michael Savage, Charlie seemed to grow taller every week, and David Kirby exonerated thimerosal, and as quickly said he hadn’t.

November brought a new theory about autism and genetics, another suggestion for identifying autism in infants (”strange play“), and more speculation about autism and schizophrenia as the same. A mandatory autism registry was proposed in New Jersey; researchers began to look for autism’s causes at home; and I attended the November 21st meeting of the Interagency Autism Coordinating Committee (IACC), at which the draft of the Strategic Plan was discussed.

December, this past month, began with Autism Twitter Day, organized by Bonnie Sayers; an exchange about some dangerous ideas about autism, and some events concerning autistic rights, from an autistic girl in Wisconsin becoming a Brownie after being asked not to return to a special needs Brownie troop, to calls for the inclusion of autistic individuals on the boards of autism organizations. (This letter states why.)

And some final thoughts as 2008 ended: What would you like to see in autism legislation? (Something besides insurance coverage for specific therapies.) And isn’t it time for vaccine talk detox? (Yes.)

So farewell to 2008 and onward into the new year, which I suspect holds some more changes all the time for Charlie, and which holds a big one for me, too—-but more on that tomorrow, once we’re back home in Jersey.

20-year-old Kevin Brinegar, who has autism, stabbed his mother, Karen Brinegar, twice in the back last Monday, the September 21st Miami Herald reports. He is charged with aggravated battery charges and is being held on a $50,000 bond at North Broward Bureau (FL), a minimum-security facility for the mentally ill and medically infirm. Expert and legal opinions vary about what Kevin Brinegar faces:

Dr. Stephen Edelson, director of the Autism Research Institute, expressed concern about the level of care Brinegar has received, and will receive in the future.

”There’s a general feeling that in the criminal justice field, there’s some discrimination going on,” Edelson said.

“They are not treated fairly.”

Also, police often don’t understand those with autism or know how to handle them, thinking they are more predatory than they actually are, said University of Miami Professor Jon Shaw.

There is no predictable relationship between autism and violence, Shaw said. In two-thirds of cases, autism is accompanied by mental retardation and an inability to communicate, and that is often what triggers aggression.

Some also cannot differentiate between what is real and what is not, he added.

Usually, they act out by pushing, biting or hitting. But to chase someone out of a home, hold her down and stab her twice, as BSO alleges Brinegar did, almost never happens.

”It’s quite unusual that he actually used a weapon,” Edelson said.

“I’ve been in the field 30 years, and I’ve never heard of it.”

Autism is not a defense against a violent crime, said Bruce J. Winick, a UM law professor. For the state to prosecute, Brinegar merely has to be competent to stand trial.

The real question is whether he knew right from wrong.

Brinegar was originally placed in a maximum-security main jail and, after meeting with mental health professionals, was placed at North Broward. His mother has been released from the hospital.

A study on chelation, a controversial biomedical treatment for autism, has been put on hold, today’s Associated Press reports. Chelation, in which heavy metals are removed from the body, is based on the notion that mercury in vaccines can be linked to autism; an autistic boy, Abubakar Tariq Nadama, died in 2005 after receiving chelation treatment at the office of Dr. Roy Kerry in Pennsylvania. The chelation study was to be funded by the federal government and has been put on hold due to safety concerns, according to Dr. Thomas Insel, the director of the National Institute of Mental Health. The Associated Press quotes Dr. Insel as saying:

“So many moms have said, `It’s saved my kids.’”

The Associated Press describes one 8-year-old autistic boy, Charlie, who received chelation. According to his mother, Christina Blakey, treatment helped him to stop having tantrums and to develop certain social skills—looking at her, waving, lining up with other children, walking into school on his own.

There is no way to prove whether chelation made a difference or whether Charlie simply adjusted to the school routine.

as the Associated Press comments; perhaps school and educational treatments might also have played a part?

Dr. Martin Myers, former director of the federal National Vaccine Program Office and co-author of Do Vaccines Cause That? believes that chelation is “unethical” and thinks that it is “‘incumbent on the scientific community to evaluate it’” as many parents (I know more than a few) are using chelation without scientific evidence. Celebrity Jenny McCarthy has announced that she plans to try chelating her autistic son, Evan, this summer—-this won’t be the last time we hear about chelation, however much or little it is studied.

Ever since March when the government conceded that vaccines had “aggravated” a pre-existing mitochondrial disorder and led to symptoms of autism in a 9-year-old girl, Hannah Poling, whether there’s any link between mitonchondrial disorders and autism has been under questions. Is there a “subpopulation of mitochondrial autism“?, Hannah Poling’s father, Dr. Jon Poling has asked. Researchers at Medical Neurogenetics have said they have found evidence of a genetic link and mitochondrial disease. Anecdotally, I’ve heard parents of autistic children seeking out tests for mitochondrial disorders.

In the June 28th New York Times, Gardiner Harris (who has previously reported on vaccines and autism) writes about a meeting on Sunday in Indianapolis that federal officials have called for experts in mitochondrial disorders discuss the “controversial case” of Hannah Poling. The meeting is co-sponsored by co-sponsored by the the National Institute of Mental Health, the Food and Drug Administration, the C.D.C., the National Institutes of Health, the Department of Health and Human Services and the National Institute of Neurological Disorders and Stroke.

The New York Times article suggests that another controversy could be afoot:

the government has so far kept quiet a second case that some say is more disturbing and more relevant to the meeting.

On January 11, a 6-year-old girl from Colorado received FluMist, a flu vaccine, and about a week later “became weak with multiple episodes of falling to ground” and “difficulty walking,” according to a case report filed with federal health officials and obtained by The New York Times.

The girl grew increasingly weak and feverish and “became more limp, appears sleepy, acts as if drunk,” the report said. She was hospitalized and underwent surgery and was finally withdrawn from life support. She died on April 5, according to the report.

Both the 9- and 6-year-olds suffered from mitochondrial disorders, a spectrum of genetic diseases that have received almost no attention from federal health officials. The 9-year-old, Hannah Poling, was 19 months old and developing normally in 2000 when she received five shots against nine infectious diseases. Two days later, she developed a fever, cried inconsolably and refused to walk. Over the next seven months, she spiraled downward, and in 2001 she was given a diagnosis of autism.

No one knows whether vaccinations had anything to do with the girls’ health problems, and the scientific significance of individual cases is always difficult to assess. But suggestions that mitochondrial disorders could be triggered or worsened by vaccinations, and that the disorders may be linked to autism, spurred Sunday’s meeting and has brought the disorders sudden national attention.

Those scheduled to present at the meeting who were contacted by The Times said that they knew nothing of the Colorado case.

“I haven’t heard about this case,” said Dr. Thomas R. Insel, director of the National Institute of Mental Health and the day’s first speaker.

Dr. John Iskander, acting director of the immunization safety office at the Centers for Disease Control and Prevention, said that his group studied the Colorado case closely but did not discuss it with those presenting at Sunday’s meeting and had no plans to present the case to the conference, although he and members of his group will attend.

Dr. Iskander notes that those called to the meeting are not vaccine safety experts, but, again, experts in mitochondrial disorders. The Colorado girl had, too, “not experienced any problems with her previous vaccinations and was relatively old at the time of her diagnosis” with mitochondrial disorder and there is no mention of autism in her case. Dr. Darryl Devivo, a professor of neurology and pediatrics at Columbia University, who is a leading expert in the field of mitochondrial disorders, notes that “‘After caring for hundreds of children with mitochondrial disease, I can’t recall a single one that had a complication from vaccination.’” While it’s noted that a test to screen for mitochondrial disorders is not sufficiently “’sensitive or specific,” Dr. Insel notes that discussion about these, vaccines, and autism is needed; he says:

“We’re talking about two things we don’t understand very well, mitochondrial disorder and autism, and putting them together. It’s like two drunks holding each other up.”

More questions for sure and probably more calls of controversy will be heard, too.

The earlier part of this year saw the publication of a number of studies about the genetics of autism, with one scientist speculating about a unified theory of autism.

The July 2008 Nature Genetics has a review of psychiatric genetics that considers progress and controversy. Here is the abstract:

Several psychiatric disorders — such as bipolar disorder, schizophrenia and autism — are highly heritable, yet identifying their genetic basis has been challenging, with most discoveries failing to be replicated. However, inroads have been made by the incorporation of intermediate traits (endophenotypes) and of environmental factors into genetic analyses, and through the identification of rare inherited variants and novel structural mutations. Current efforts aim to increase sample sizes by gathering larger samples for case–control studies or through meta-analyses of such studies. More attention on unique families, rare variants, and on incorporating environment and the emerging knowledge of biological function and pathways into genetic analysis is warranted.

And some more information about genetic tests and psychiatric disorders: In a recent post on Eye on DNA by Dr. Hsien Hsien Lei, describes newly-developed (and, in some cases, still being developed) genetic tests for psychiatric disorders that are being offered by three different companies. Neuromark’s Mark-C will examine two genetic markers, GRIK2 and GRIA3, that appear to increase the risk of suicidal thoughts in people taking antidepressant drug Celexa; Psynomics is offering a test for mutations of genes linked to bipolar disorder and to patient responses to serotonin-based drugs; SureGene “examines a panel of (unspecified) genes and markers that is being marketed to aid in the diagnosis of patients at risk of developing psychosis,” and that may also be used to predict a person’s response to taking anti-psychotic medications. Autism is not a psychiatric condition (though it used to be considered such); some of the issues raised in the development of these genetic tests are relevant to consider, especially if some kind of genetic test for autism is created.Eye on DNA includes a thoughtful comment from a family practice physician, Tim Janzen, on a Genealogy-DNA discussion list. Dr. Janzen notes that attendant anxiety that may arise in some one who receives a positive result on such a test and underscores that these tests indicate a “genetic predisposition”:

Patients who have a family history of mental illness or other conditions already know that they have a predisposition (unless they are adopted). Thus the genetic results will either reinforce the fact that specific patients are at increased personal risk or they will show that they are at lower risk than they might otherwise be. We shouldn’t forget that environment also plays a role in mental health. Drug abuse is one environmental factor that also predisposes to mental illness.

Genetic testing might be incorporated into “treatment algorithms for people with mental illness.” Regarding “environmental factors,” it’s not quite clear what Dr. Janzen is referring to, though he seems to be speaking not so much about factors such as air pollution, but about what potential parents might do, or not do.

Genetic testing is an understandably sensitive topic in discussions about autism: There are concerns about what choices parents might make if there were a prenatal test for autism and as other diagnostic genetic tests for autism are developed. As my son’s communication abilities are limited—–he is not able, yet, to describe his emotions or if his stomach hurts, or how a certain medication might be affecting him—and here other kinds of testing might, or might not be helpful. Indeed, seeking answers about what to do is a motivating reason for why people are in search of a physiological marker for autism.

Thanks to everyone who tuned in to Good Morning America this morning—-the segment on neurodiversity has been pushed to tomorrow, Tuesday, June 10th, sometime around 8 AM to 8:30 am. Speaking in it will be Ari Ne’eman, president of the Autistic Self-Advocacy Network (ASAN); Dr. Tom Insel, director of the National Institute of Mental Health (NIMH), and me.

Sunday’s New York Times had an article about “Mad Pride”: More people with “severe forms of mental illness such as schizophrenia and bipolar disorder” are now speaking out about “their demons”:

About 5.7 million Americans over 18 have bipolar disorder, which is classified as a mood disorder, according to the National Institute of Mental Health. Another 2.4 million have schizophrenia, which is considered a thought disorder. The small slice of this disparate population who have chosen to share their experiences with the public liken their efforts to those of the gay-rights and similar movements of a generation ago.

Just as gay-rights activists reclaimed the word queer as a badge of honor rather than a slur, these advocates proudly call themselves mad; they say their conditions do not preclude them from productive lives.

One of the persons interviewed for the article is a law professor and associate dean at the University of Southern California, Elyn Saks, who has schizophrenia; she did not reveal her diagnosis until after she had received tenure.

Autism as I understand it, as I know it from my son Charlie, and as I write about it here, is not a mental illness. It’s a neurological disorder. Nonetheless, there’s been a side-discussion going on about autism, trauma, and neurosis in an older post I did on Floortime therapy, in which autism is referred to as psychological and even psychogenic. If there’s one theory about autism causation that today’s parents universally reject, it is that they themselves “caused” a child to become autistic due to the parents being emotionally withdrawn, as stated in the infamous “refrigerator mother theory.”

One could argue that some of the past and present stigma cast upon autistic individuals is in part because of misconceptions not only of autism, but of mental illness. More about “Mad Pride” in the New York Times:

Members of the mad pride movement do not always agree on their aims and intentions. For some, the objective is to continue the destigmatization of mental illness. A vocal, controversial wing rejects the need to treat mental afflictions with psychotropic drugs and seeks alternatives to the shifting, often inconsistent care offered by the medical establishment. Many members of the movement say they are publicly discussing their own struggles to help those with similar conditions and to inform the general public.

“It used to be you were labeled with your diagnosis and that was it; you were marginalized,” said Molly Sprengelmeyer, an organizer for the Asheville Radical Mental Health Collective, a mad pride group in North Carolina. “If people found out, it was a death sentence, professionally and socially.”

She added, “We are hoping to change all that by talking.”

The confessional mood encouraged by memoirs and blogs, as well as the self-help advocacy movement in mental health, have deepened the understanding of bipolar disorder and schizophrenia.

It’s the stigma attached to mental illness that rings true. There’s been more than a few people whom we’ve heard say things like “he’s nuts!” or “what’s wrong with that kid?” about Charlie. Certainly we strive to teach Charlie that home and the car are the safe places to do some things, but I also know that some seemingly “odd behaviors” that Charlie might do (like the curious and loud barking sound he’s been making of late) are how he communicates how he feels about being in some public situations. We try to teach him to talk and not be quite that loud, and we also hope seeing Charlie out and about might teach people that autism, too, is not a “death sentence.”

And as far as pride—I can never say enough about how proud I am of Charlie.

(But you probably already know that.)

“In psychology, I’m starting to get the weary feeling that everything gives you mental illness,” quips Williams Saletan in the May 7th Slate on Human Nature. Saletan references the recent study which found that parents who have psychiatric disorders are doubly at risk to have an autistic child (while also citing another study according to which “adoption can double a child’s risk of disruptive behavior disorder“). Have to say, I’m starting to feel that everything can give a person autism.

What hasn’t been cited as a cause of autism?

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.