Anorexia ≠ autism

Of late, several researchers have been exploring a possible link between anorexia nervosa and autism spectrum disorders. I've never understood why. It seems fairly clear to me that acute anorexia brings with it an altered state of consciousness that has little to do with a person's ordinary state of mind or ability to interact with people. In his seminal study on human starvation, researcher Ancel Keys noted that those in the throes of semi-starvation tend to lose both the interest in social interactions and the ability to pull them off. That certainly echoes my own observations.

Now, thankfully, researchers at King's College in London have come to the same conclusion. The study's authors write, "These findings indicate almost complete normalization of emotion recognition ability in recovered patients, despite the observation of difficulties in both domains in currently ill patients. Findings suggest that similarities between AN and ASD are restricted to the currently ill AN state and such difficulties in AN may be a factor of starvation."

Now, can we move on to more fruitful avenues of research, please? Like developing effective treatments?

OT: Clearing the air on Kawasaki Disease

My heart goes out to John Travolta and his family for the loss of their 16-year-old son, Jett. What a devastating nightmare to lose a child. Any parent who's faced a child's mortality can empathize, I'm sure.

The Travolta family blames Jett's childhood bout with Kawasaki disease. We won't know for sure what happened until the autopsy is complete. But I'd like to clear up a few misconceptions about KD, as it's called, in the meantime

Kawasaki disease is a full-body vasculitis, meaning that blood vessels all over the body become inflamed. That's why the whites of the eyes turn red, along with the the soles of the feet and palms of the hands and the tongue. The heart, of course, is vascular, and it, too, becomes inflamed and can suffer permanent damage. KD affects mainly babies and toddlers of Japanese descent, and is often not diagnosed quickly. Children can indeed wind up with scarred and damaged hearts.

My younger daughter, Lulu, had KD when she was 8 years old. Luckily, a pediatrician recognized and diagnosed it promptly. Lulu spent 5 days in the hospital on intravenous gamma globulin and months convalescing at home. Today, at 13, her heart is fine.

No one knows what causes KD--and believe me, people have speculated galore. The Travoltas have been convinced for years that Jett's KD was caused by carpet cleaners. That's one of the theories that's circulated about it. I don't buy it, partly because hey, we never clean our carpets. KD is statistically more common in the winter and early spring (Lulu came down with it in January); maybe there's a correlation because people clean their carpets more in winter. I wrote a piece on KD for the New York Times and talked to all the leading researchers on it. They don't buy the carpet cleaners theory, either. It's more likely to be related to Staphylococcus aureus (Staph A) or toxic shock syndrome.

There is absolutely no evidence that KD causes autism. Repeat: KD does not, to the best of our knowledge, cause autism.

Of course there's a lot we don't know. We don't know that Jett Travolta was autistic, and frankly, it's none of our business. But we do know that kids who have had KD do not typically wind up with seizure disorders or autism.

I'm thinking of the Travolta family in their grief and loss, and hoping that Jett's death doesn't add to the misconceptions around Kawasaki disease. Maybe this well-publicized incident will inspire some researchers to get on the stick. There's been very little research done on KD. How about it?

Ransom me

NYU's "Ransom Notes" ad campaign has taken a lot of heat in the form of bad press lately.

In case you've been in Tahiti for the last few weeks, these ads are written in the form of mock ransom notes from children with a range of psychiatric disorders, from autism to anorexia. The premise is that these illnesses "kidnap" kids, and that treatment "rescues" them.

And guess what? I think this is BLOODY BRILLIANT. I had panic disorder--undiagnosed and untreated--for my entire childhood, and this is exactly how it felt even to me at the time. I wish someone had noticed my distress and rescued me. And as the parent of a teen with anorexia, I appreciate the sentiment here--that parents need to wake up and do something.

I get the counterarguments, especially as they come from parents in the autism advocacy movement. And I'm just as cynical as the average reader (maybe more so) about the drug company lobbies. There's money to be made in peddling medications, and kids are a big market.

But none of this holds a candle to the absolute life-shattering despair of living with an untreated psychiatric illness. Of feeling like you're going mad and no one is noticing. Of the fallout of years and years of feeling so alone and helpless.

I often wonder how my life might be different had someone helped me with panic disorder when I was a child. I suspect I'd be a very different person today. And while those who know and love me might say, "We wouldn't want that!"--I'd take it in a heartbeat.

Sometimes a strong message is what's needed. I think BBDO, the agency that created this campaign, got it right.

Advocacy for what?

I've given a lot of thought to how those of us who have children with eating disorders can model our advocacy efforts after those of other groups. Parents of kids with autism, for instance, have been very effective in pushing for legislation covering treatments and other issues.

The thing is, most people aren't busy arguing about what causes autism in the first place, and they pretty much agree on treatments. Whereas folks in the e.d. world are divided in every possible way.

My friend Laura Collins says she'd like to lock all the e.d. experts in a room until they come to an agreement. Ha!

One of the biggest arguments, of course, is the biology-vs.-psychology one. Both parents and professionals have vested interests in taking one side or the other when it comes to both cause and treatment.

When I imagine trying to bring together a coalition of eating disorders parents and professionals to push for legislation and advocacy, I get a sense of how great the conflicts are. For instance, I don't think individual therapy is useful in treating anorexia, at least not during the active recovery phase, so I'm not sure I would want to push for legislation to cover lots and lots of individual therapy.

In case you couldn't tell, I'm of the biology camp, as in the Minnesota Starvation Study. I don't believe kids "think" their way into eating disorders, and I'm damn sure they don't think their way out of them.

I think what's needed most are more and better treatment studies, like the one Dan Le Grange is doing at University of Chicago. We need to know what the best treatments are for anorexia and bulimia.

What do you think we should be pushing for?

More inspiration from autism advocacy

A reader sent me this link for an inspiring story about success from a group of parents with autistic children and their advocacy work.

What's it gonna take for those of us with children who are eating disordered? What would it take to force insurers to cover e.d. treatments at the same level they cover other biologically based illnesses?

Maybe we each need to pledge to do SOMETHING on the advocacy front when we're able.

Taking a lesson from autism

An article in my local paper got me thinking yesterday. If the autism parents can get their shit together to push for more comprehensive insurance coverage of their kids' illness, why can't we?

Jim Lock himself, one of the gurus of the Maudsley method here in the U.S., once told me that eating disorders parents should model ourselves on the autism parents. As a group they've dedicated themselves to not just supporting their children but to advocacy on all levels--especially, now, with regard to insurance coverage.

The article quotes an autism professional as saying "Most of the major autism organizations, both providers and support groups, have come together in agreement that insurance coverage for all individuals with autism is a positive and important need."

Same goes for anorexia and bulimia, as well we know.

Like anorexia, autism is often not covered, or covered poorly, because it's classified as an emotional disorder rather than a brain disorder. But I say, if your brain isn't considered part of your biological body, then what is it--a disembodied organ floating in space?

One of the autism advocates is quoted as saying "We're continuing to work together in the hope legislators take notice that the need is not going to go away and we're not going to go away."

Hey, what about us? What about those of us who have watched our children waste away or go through hell, only to be told that insurance doesn't cover therapy, or IP treatment or whatever the doctors are recommending at that moment?

What about people like Anna Westin, whose smart, articulate parents fought like hell to get her well, only to be turned down by insurance eventually? Anna committed suicide, and her parents took her experiences to the state insurance commissioner and to the courts and won not just money but also changed the way insurers in Minnesota cover anorexia.

We could do this, state by state. That's what it's going to take, probably, unless we can get the federal mental health parity bill passed.

I'm sick of "steps forward," though, and "making progress." We aren't making progress when it comes eating disorders. What will it take?

The rest of the family

An incident that happened at my sixth-grader's school last fall prompted me to write a piece about the effects of eating disorders on the rest of the family, which appeared in yesterday's New York Times. (Sorry, I can't do links when I'm blogging remotely, and right now I'm sitting at the airport waiting for a flight that's been delayed 6 hours.) The URL is http://www.nytimes.com/2007/03/06/health/06case.html?em&ex=1173416400&en=774d3d641fa1234b&ei=5087%0A.

But truly, this kind of fallout is true whenever one child in a family is desperately ill, particularly if the illness has a chronic or potentially lethal component. Having a sibling with cancer, diabetes, autism, developmental delays, and other conditions always creates a difficult situation for the other sibling.

I was an other sibling when I was growing up. Today, no doubt, our family would have wound up in family therapy, but back then my sister was the one who got the diagnosis "emotionally troubled," whatever that was supposed to mean. I now understand that she was most visibly acting out many of the feelings swirling around our little family. Even so, her behaviors and condition dominated the household.

I remember what it was like to have to stuff my feelings so as not to upset the teetering balance of our family dynamic; to resent the attention she got even though it was mostly negative attention, and clearly she was miserable; to wish that her problems, whatever they were, would just go away. This perspective was much on my mind last year and now as I watch my younger daughter struggle with the fallout from her sister's illness.

I have enormous respect for both my daughters, for the pain and difficulties they have both suffered, as well as for all children living with chronic illnesses, whatever they are. And I'm grateful that we now understand a lot more about how illnesses like these change the family, and what to do about it: Get the best medical care possible and then love the heck out of our children, and ourselves.

Maybe that's not so different from what our parents did.