I Am Mental Illness: Anorexia–Biting Back

Battling the uninformed, insurance companies, and your own compulsions

[Ed. note: This post is the first in our series, “I Am Mental Illness,” bringing you personal experiences living with a mental illness. It’s likely that no single one of us lives a life untouched by mental illness, our own or that of someone we know. Yet in spite of their high prevalence, these disorders remain stigmatized and undersupported. To learn more about mental illness, you can start with the National Alliance on Mental Illness website. To learn more about anorexia and other eating disorders, you can start with this guidebook from the National Institute of Mental Health. Double X Science has previously featured a post by Harriet Brown describing the effects of family-based treatment for anorexia. Continue reading

Mental illness, autism, and mass murder, and why Joe Scarborough needs to stop talking

Via Wikimedia Commons. Public domain. 

[Ed. note: Some of this information comes from a post that previously appeared at The Biology Files following the shooting massacre in Arizona targeting U.S. Rep. Gabrielle Giffords, among others.]

By Emily Willingham 

Today, Joe Scarborough at MSNBC warned viewers not to generalize about the horrific events in Aurora, CO, and then proceeded to opine that the killer in question was “on the autism scale.” I’m not exactly sure what “on the autism scale” means, as I’ve never in all my years of involvement in the autism community come across such a device, but many of us in that community were waiting–nay, expecting–something like this almost from the minute we learned who had committed these murders. Too bad it came from a parent member of that community.

Hey, Joe, you’ve got a gun in your hand, and it’s not like the one that the who-knows-what-his-disorder-is murderer in Aurora used. No. Your weapon is of a more subtle nature, and you wield it from a venue that reaches millions of people who don’t know that the ammo you’re firing is empty bullshit. But that bullshit ends up smearing the autistic community as violent criminals capable of all manner of psychotic behavior, including the taking of innocent lives and the well-planned rigging of an apartment building with dangerous explosives. And you must understand this on some level, as you have a son who is on the autism spectrum.

Here’s the thing, Joe. You’re conflating what can be very personal, nonfatal aggression of an overwhelmed autistic person with the wanton and willful and carefully planned destruction of total strangers in a crowded theater. Yes, some autistic people are aggressive, in the moment, in response to a moment, to being overwhelmed and not understood, to being mishandled and misused. That sort of aggression is a very, very different animal from the sort of cold, calculated malevolence that leads a young man to inflict tragedy across a large swath of humanity, total strangers to him, arriving with a measured burst of deadly force before calmly surrendering himself to authorities. You, Joe Scarborough, see that behavior as somehow “on the autism scale.” Anyone who has even a mild grasp of autism knows how very far from reality that kind of behavior is for an autistic person. 

So let’s talk about violence. 
A look at the violence literature reveals two rough categories of violent brain and genetics: the brain of the impulsively or hostilely violent and the brain of the proactive, or instrumentally violent–the one who carefully plans the violent act, rather than committing it in the heat of the moment. Impulsive violence, thanks to its unpredictability and relative ubiquity, seems to get the bulk of the attention. Proactive violence, which encompasses the planned violence of war, is a different animal altogether. And psychopathic instrumental violence may well be the most terrifying of them all. The two appear to have very different underlying mechanisms and origins, as well:

Biological models of violence have identified distinct neural patterns that characterize each type of violence. For example, the “low-arousal” aggressor more likely to commit instrumental violence is underreactive and responds sluggishly to stressors. In contrast, the “high-arousal” aggressor who is more prone to hostile violence tends to be hypervigiliant and easily frustrated 
In humans, instrumental aggression is roughly analogous to predatory aggression although it is limited to intraspecies behavior….Similarly, emotional or hostile aggression in humans could be considered the analogue of defensive aggression in response to a threat or perceived threat.

No one–and I mean, no one–has a clue what drove this man to commit his heinous crimes. What we do know is that he planned his hellish introduction into our psyches for months beforehand, carefully accumulating all the accouterments needed to generate a national and personal nightmare. What we also know is that he carefully planned his violent act; it was not, like an autistic meltdown, an act of the moment, an unplanned reaction

And you’re wrong on some other counts as well, demonstrating the real dangers of a weapon like yours in the hands of the uninformed. You said that the minute you heard about the shooting, you knew it would be young white male, probably from “an affluent neighborhood.” While being young, white, and male may fit the profile of many serial killers, mass murders are a different breed. They come from different backgrounds and ethnicities, but most share a single motivation: revenge. When they go beyond personal connections in their targets and kill total strangers, that revenge is usually against a society the killer thinks has wronged him. 

Other features in common are being male, being a “loner,” and feeling alienated from the world. For the record, “autistic” does not equate with “loner” or “male,” as much as you or the news media would like to distort it into that mold. Research, such as it is, suggests that the more a killer goes impersonal and targets strangers, the more likely a mental illness is to be involved. While that mental illness is usually paranoid schizophrenia, we must all remember that there are many, many more murderers in this world who are not schizophrenic than there are schizophrenics who commit this kind of violence. The coupling is not inevitable or even common. Indeed, better predictors of violence are unemployment, physical abuse, and recent divorce. The killer in the Aurora case had recently in effect become unemployed, having left graduate school and done poorly on spring exams. 

I’ll close with this final observation: Autism is a disorder that is present from birth or very soon after. There are, however, other mental disorders and mental breaks that occur, particularly in young men and particularly at vulnerable developmental periods like adolescence and early adulthood. Not only does autism not fit here simply by virtue of its lifelong presence, but also, it’s not something that just kinda shows up when a man turns 24 years old. 

The man who destroyed so many lives showed several signs of extreme stress prior to his murderous rampage. Were these stressors the trigger for him? That I cannot say. But I can say that stress does not bring on autism in one’s 20s, and autism at any age doesn’t lead to carefully calculated revenge killings of innocent strangers. So, Joe, why don’t you just put down your weapon and back away… as quickly as you can.

These views are the opinion of the author and do not necessarily either reflect or disagree with those of the DXS editorial team. 

Anorexia nervosa, neurobiology, and family-based treatment

Via Wikimedia Commons
Photo credit: Sandra Mann
By Harriet Brown, DXS contributor

Back in 1978, psychoanalyst Hilde Bruch published the first popular book on anorexia nervosa. In The Golden Cage, she described anorexia as a psychological illness caused by environmental factors: sexual abuse, over-controlling parents, fears about growing up, and/or other psychodynamic factors. Bruch believed young patients needed to be separated from their families (a concept that became known as a “parentectomy”) so therapists could help them work through the root issues underlying the illness. Then, and only then, patients would choose to resume eating. If they were still alive.

Bruch’s observations dictated eating-disorders treatments for decades, treatments that led to spectacularly ineffective results. Only about 35% of people with anorexia recovered; another 20% died, of starvation or suicide; and the rest lived with some level of chronic illness for the rest of their lives.

Not a great track record, overall, and especially devastating for women, who suffer from anorexia at a rate of 10 times that of men. Luckily, we know a lot more about anorexia and other eating disorders now than we did in 1978.

“It’s Not About the Food”

In Bruch’s day, anorexia wasn’t the only illness attributed to faulty parenting and/or trauma. Therapists saw depression, anxiety, schizophrenia, eating disorders, and homosexuality (long considered a psychiatric “illness”) as ailments of the mind alone. Thanks to the rising field of behavioral neuroscience, we’ve begun to untangle the ways brain circuitry, neural architecture, and other biological processes contribute to these disorders. Most experts now agree that depression and anxiety can be caused by, say, neurotransmitter imbalances as much as unresolved emotional conflicts, and treat them accordingly. But the field of eating-disorders treatment has been slow to jump on the neurobiology bandwagon. When my daughter was diagnosed with anorexia in 2005, for instance, we were told to find her a therapist and try to get our daughter to eat “without being the food police,” because, as one therapist informed us, “It’s not about the food.”

Actually, it is about the food. Especially when you’re starving.

Ancel Keys’ 1950 Semi-Starvation Study tracked the effects of starvation and subsequent re-feeding on 36 healthy young men, all conscientious objectors who volunteered for the experiment. Keys was drawn to the subject during World War II, when millions in war-torn Europe – especially those in concentration camps – starved for years. One of Keys’ most interesting findings was that starvation itself, followed by re-feeding after a period of prolonged starvation, produced both physical and psychological symptoms, including depression, preoccupation with weight and body image, anxiety, and obsessions with food, eating, and cooking—all symptoms we now associate with anorexia. Re-feeding the volunteers eventuallyreversed most of the symptoms. However, this approach proved to be difficult on a psychological level, and in some ways more difficult than the starvation period. These results were a clear illustration of just how profound the effects of months of starvation were on the body and mind.

Alas, Keys’ findings were pretty much ignored by the field of eating-disorders treatment for 40-some years, until new technologies like functional magnetic resonance imaging (fMRI) and research gave new context to his work. We now know there is no single root cause for eating disorders. They’re what researchers call multi-factorial, triggered by a perfect storm of factors that probably differs for each person who develops an eating disorder. “Personality characteristics, the environment you live in, your genetic makeup—it’s like a cake recipe,” says Daniel le Grange, Ph.D., director of the Eating Disorders Program at the University of Chicago. “All the ingredients have to be there for that person to develop anorexia.”

One of those ingredients is genetics. Twenty years ago, the Price Foundation sponsored a project that collected DNA samples from thousands of people with eating disorders, their families, and control participants. That data, along with information from the 2006 Swedish Twin Study, suggests that anorexia is highly heritable. “Genes play a substantial role in liability to this illness,” says Cindy Bulik, Ph.D., a professor of psychiatry and director of the University of North Carolina’s Eating Disorders Program. And while no one has yet found a specific anorexia gene, researchers are focusing on an area of chromosome 1 that shows important gene linkages.

Certain personality traits associated with anorexia are probably heritable as well. “Anxiety, inhibition, obsessionality, and perfectionism seem to be present in families of people with an eating disorder,” explains Walter Kaye, M.D., who directs the Eating Disorders Treatment and Research Program at the University of California-San Diego. Another ingredient is neurobiology—literally, the way your brain is structured and how it works. Dr. Kaye’s team at UCSD uses fMRI technology to map blood flow in people’s brains as they think of or perform a task. In one study, Kaye and his colleagues looked at the brains of people with anorexia, people recovered from anorexia, and people who’d never had an eating disorder as they played a gambling game. Participants were asked to guess a number and were rewarded for correct guesses with money or “punished” for incorrect or no guesses by losing money.

Participants in the control group responded to wins and losses by “living in the moment,” wrote researchers: “That is, they made a guess and then moved on to the next task.” But people with anorexia, as well as people who’d recovered from anorexia, showed greater blood flow to the dorsal caudate, an area of the brain that helps link actions and their outcomes, as well as differences in their brains’ dopamine pathways. “People with anorexia nervosa do not live in the moment,” concluded Kaye. “They tend to have exaggerated and obsessive worry about the consequences of their behaviors, looking for rules when there are none, and they are overly concerned about making mistakes.” This study was the first to show altered pathways in the brain even in those recovered from anorexia, suggesting that inherent differences in the brain’s architecture and signaling systems help trigger the illness in the first place.

Food Is Medicine

Some of the best news to come out of research on anorexia is a new therapy aimed at kids and teens. Family-based treatment (FBT), also known as the Maudsley approach, was developed at the Maudsley Hospital in London by Ivan Eisler and Christopher Dare, family therapists who watched nurses on the inpatient eating-disorders unit get patients to eat by sitting with them, talking to them, rubbing their backs, and supporting them. Eisler and Dare wondered how that kind of effective encouragement could be used outside the hospital.

Their observations led them to develop family-based treatment, or FBT, a three-phase treatment for teens and young adults that sidesteps the debate on etiology and focuses instead on recovery. “FBT is agnostic on cause,” says Dr. Le Grange. During phase one, families (usually parents) take charge of a child’s eating, with a goal of fully restoring weight (rather than get to the “90 percent of ideal body weight” many programs use as a benchmark). In phase two, families gradually transfer responsibility for eating back to the teen. Phase three addresses other problems or issues related to normal adolescent development, if there are any.

FBT is a pragmatic approach that recognizes that while people with anorexia are in the throes of acute malnourishment, they can’t choose to eat. And that represents one of the biggest shifts in thinking about eating disorders. The DSM-IV, the most recent “bible” of psychiatric treatment, lists as the first symptom of anorexia “a refusal to maintain body weight at or above a minimally normal weight for age and height.” That notion of refusal is key to how anorexia has been seen, and treated, in the past: as a refusal to eat or gain weight. An acting out. A choice. Which makes sense within the psychodynamic model of cause.

But it doesn’t jibe with the research, which suggests that anorexia is more of an inability to eat than a refusal. Forty-five years ago, Aryeh Routtenberg, then (and still) a professor of psychology at Northwestern University, discovered that when he gave rats only brief daily access to food but let them run as much as they wanted on wheels, they would gradually eat less and less, and run more and more. In fact, they would run without eating until they died, a paradigm Routtenberg called activity-based anorexia (ABA). Rats with ABA seemed to be in the grip of a profound physiological imbalance, one that overrode the normal biological imperatives of hunger and self-preservation. ABA in rats suggests that however it starts, once the cycle of restricting and/or compulsive exercising passes a certain threshold, it takes on a life of its own. Self-starvation is no longer (if it ever was) a choice, but a compulsion to the death.

That’s part of the thinking in FBT. Food is the best medicine for people with anorexia, but they can’t choose to eat. They need someone else to make that choice for them. Therapists don’t sit at the table with patients, but parents do. And parents love and know their children. Like the nurses at the Maudsley Hospital, they find ways to get kids to eat. In a sense, what parents do is outshout the anorexia “voice” many sufferers report hearing, a voice in their heads that tells them not to eat and berates them when they do. Parents take the responsibility for making the choice to eat away from the sufferer, who may insist she’s choosing not to eat but who, underneath the illness, is terrified and hungry.

The best aspect of FBT is that it works. Not for everyone, but for the majority of kids and teens. Several randomized controlled studies of FBT and “treatment as usual” (talk therapy without pressure to eat) show recovery rates of 80 to 90 percent with FBT—a huge improvement over previous recovery rates. A study at the University of Chicago is looking at adapting the treatment for young adults; early results are promising.

The most challenging aspect of FBT is that it’s hard to find. Relatively few therapists in the U.S. are trained in the approach. When our daughter got sick, my husband and I couldn’t find a local FBT therapist. So we cobbled together a team that included our pediatrician, a therapist, and lots of friends who supported our family through the grueling work of re-feeding our daughter. Today she’s a healthy college student with friends, a boyfriend, career goals, and a good relationship with us.

A few years ago, Dr. Le Grange and his research partner, Dr. James Lock of Stanford, created a training institute that certifies a handful of FBT therapists each year. (For a list of FBT providers, visit the Maudsley Parents website.) It’s a start. But therapists are notoriously slow to adopt new treatments, and FBT is no exception. Some therapists find FBT controversial because it upends the conventional view of eating disorders and treatments. Some cling to the psychodynamic view of eating disorders despite the lack of evidence. Still, many in the field have at least heard of FBT and Kaye’s neurobiological findings, even if they don’t believe in them yet.

Change comes slowly. But it comes.

* * *

Harriet Brown teaches magazine journalism at the S.I. Newhouse School of Public Communications in Syracuse, New York. Her latest book is Brave Girl Eating: A Family’s Struggle with Anorexia (William Morrow, 2010).

be there for that person to develop anorexia.”

One of those ingredients is genetics. Twenty years ago, the Price Foundation sponsored a project that collected DNA samples from thousands of people with eating disorders, their families, and control participants. That data, along with information from the 2006 Swedish Twin Study, suggests that anorexia is highly heritable. “Genes play a substantial role in liability to this illness,” says Cindy Bulik, Ph.D., a professor of psychiatry and director of the University of North Carolina’s Eating Disorders Program. And while no one has yet found a specific anorexia gene, researchers are focusing on an area of chromosome 1 that shows important gene linkages.
Certain personality traits associated with anorexia are probably heritable as well. “Anxiety, inhibition, obsessionality, and perfectionism seem to be present in families of people with an eating disorder,” explains Walter Kaye, M.D., who directs the Eating Disorders Treatment and Research Program at the University of California-San Diego. Another ingredient is neurobiology—literally, the way your brain is structured and how it works. Dr. Kaye’s team at UCSD uses fMRI technology to map blood flow in people’s brains as they think of or perform a task. In one study, Kaye and his colleagues looked at the brains of people with anorexia, people recovered from anorexia, and people who’d never had an eating disorder as they played a gambling game. Participants were asked to guess a number and were rewarded for correct guesses with money or “punished” for incorrect or no guesses by losing money.
Participants in the control group responded to wins and losses by “living in the moment,” wrote researchers: “That is, they made a guess and then moved on to the next task.” But people with anorexia, as well as people who’d recovered from anorexia, showed greater blood flow to the dorsal caudate, an area of the brain that helps link actions and their outcomes, as well as differences in their brains’ dopamine pathways. “People with anorexia nervosa do not live in the moment,” concluded Kaye. “They tend to have exaggerated and obsessive worry about the consequences of their behaviors, looking for rules when there are none, and they are overly concerned about making mistakes.” This study was the first to show altered pathways in the brain even in those recovered from anorexia, suggesting that inherent differences in the brain’s architecture and signaling systems help trigger the illness in the first place.
Food Is Medicine
Some of the best news to come out of research on anorexia is a new therapy aimed at kids and teens. Family-based treatment (FBT), also known as the Maudsley approach, was developed at the Maudsley Hospital in London by Ivan Eisler and Christopher Dare, family therapists who watched nurses on the inpatient eating-disorders unit get patients to eat by sitting with them, talking to them, rubbing their backs, and supporting them. Eisler and Dare wondered how that kind of effective encouragement could be used outside the hospital.
Their observations led them to develop family-based treatment, or FBT, a three-phase treatment for teens and young adults that sidesteps the debate on etiology and focuses instead on recovery. “FBT is agnostic on cause,” says Dr. Le Grange. During phase one, families (usually parents) take charge of a child’s eating, with a goal of fully restoring weight (rather than get to the “90 percent of ideal body weight” many programs use as a benchmark). In phase two, families gradually transfer responsibility for eating back to the teen. Phase three addresses other problems or issues related to normal adolescent development, if there are any.
FBT is a pragmatic approach that recognizes that while people with anorexia are in the throes of acute malnourishment, they can’t choose to eat. And that represents one of the biggest shifts in thinking about eating disorders. The DSM-IV, the most recent “bible” of psychiatric treatment, lists as the first symptom of anorexia “a refusal to maintain body weight at or above a minimally normal weight for age and height.” That notion of refusal is key to how anorexia has been seen, and treated, in the past: as a refusal to eat or gain weight. An acting out. A choice. Which makes sense within the psychodynamic model of cause.
But it doesn’t jibe with the research, which suggests that anorexia is more of an inability to eat than a refusal. Forty-five years ago, Aryeh Routtenberg, then (and still) a professor of psychology at Northwestern University, discovered that when he gave rats only brief daily access to food but let them run as much as they wanted on wheels, they would gradually eat less and less, and run more and more. In fact, they would run without eating until they died, a paradigm Routtenberg called activity-based anorexia (ABA). Rats with ABA seemed to be in the grip of a profound physiological imbalance, one that overrode the normal biological imperatives of hunger and self-preservation. ABA in rats suggests that however it starts, once the cycle of restricting and/or compulsive exercising passes a certain threshold, it takes on a life of its own. Self-starvation is no longer (if it ever was) a choice, but a compulsion to the death.
That’s part of the thinking in FBT. Food is the best medicine for people with anorexia, but they can’t choose to eat. They need someone else to make that choice for them. Therapists don’t sit at the table with patients, but parents do. And parents love and know their children. Like the nurses at the Maudsley Hospital, they find ways to get kids to eat. In a sense, what parents do is outshout the anorexia “voice” many sufferers report hearing, a voice in their heads that tells them not to eat and berates them when they do. Parents take the responsibility for making the choice to eat away from the sufferer, who may insist she’s choosing not to eat but who, underneath the illness, is terrified and hungry.
The best aspect of FBT is that it works. Not for everyone, but for the majority of kids and teens. Several randomized controlled studies of FBT and “treatment as usual” (talk therapy without pressure to eat) show recovery rates of 80 to 90 percent with FBT—a huge improvement over previous recovery rates. A study at the University of Chicago is looking at adapting the treatment for young adults; early results are promising.
The most challenging aspect of FBT is that it’s hard to find. Relatively few therapists in the U.S. are trained in the approach. When our daughter got sick, my husband and I couldn’t find a local FBT therapist. So we cobbled together a team that included our pediatrician, a therapist, and lots of friends who supported our family through the grueling work of re-feeding our daughter. Today she’s a healthy college student with friends, a boyfriend, career goals, and a good relationship with us.
A few years ago, Dr. Le Grange and his research partner, Dr. James Lock of Stanford, created a training institute that certifies a handful of FBT therapists each year. (For a list of FBT providers, visit the Maudsley Parents website.) It’s a start. But therapists are notoriously slow to adopt new treatments, and FBT is no exception. Some therapists find FBT controversial because it upends the conventional view of eating disorders and treatments. Some cling to the psychodynamic view of eating disorders despite the lack of evidence. Still, many in the field have at least heard of FBT and Kaye’s neurobiological findings, even if they don’t believe in them yet.
Change comes slowly. But it comes.
* * *
Harriet Brown teaches magazine journalism at the S.I. Newhouse School of Public Communications in Syracuse, New York. Her latest book is Brave Girl Eating: A Family’s Struggle with Anorexia (William Morrow, 2010).