Sometimes things happen to me that cause me to wonder what planet I have landed on.  Five years ago — to say nothing of ten or fifteen — whenever I insisted that parents didn’t cause eating disorders, any more than they cause schizophrenia or bipolar disorder or autism, I was treated like I hadn’t done my homework.  Thankfully, that has changed. Virtually no responsible eating disorder professional of any stature believes that parents cause severe mental illnesses, of which anorexia nervosa is but one example.  Most recently the work of Drs Locke and Le Grange has been instrumental in putting the last nail in the coffin of this outdated and pernicious belief.

I believed and hoped that a stake had finally been put through the heart of this illusion.

But then several months ago I was asked to co-author an article about this very subject for a professional organization, many members of which treat eating disorders. I did so, and to my surprise the article was rejected on the basis of “insufficient evidence”. The deciding editor, in fact, forwarded us five articles which he stated represented better evidence than we had cited, and which, in fact, “disproved” our point. I am including these (outdated!) citations for those of you regular readers of this blog who like to rip into the evidence (Irishup? Chris? Anyone?). The citations:

http://www.ncbi.nlm.nih.gov/pubmed/8768353 (from 1996)

http://www.ncbi.nlm.nih.gov/pubmed/10755049 (2000)

http://www.ncbi.nlm.nih.gov/pubmed/9153672 (1997)

http://www.ncbi.nlm.nih.gov/pubmed/12562570 (2003)

http://www.ncbi.nlm.nih.gov/pubmed/11870002 (2002)

We were saddened of course not to have been able to convince an editor purporting to represent the state of the science in eating disorder treatment that there is now sufficient evidence pointing away from parental culpability in this – as in other – severe mental illnesses.  And we are appalled, quite frankly, that some professional organizations still have members who believe that parents are at fault.  What can we say? Well, as it turns out – thanks to the Internet – plenty! The following is entirely my own opinion and I will let you, dear reader, decide for yourself which is the more compelling scientific case: +++++++++++++++++++++++++++++++++ by Julie O’Toole, MD – Founder and Chief Medical Officer, Kartini Clinic for Children and Families  As a pediatric eating disorder physician, it has been my job and privilege to design a treatment protocol for children and adolescents which reflects my belief – Kartini Clinic’s belief – that parents do not cause eating disorders and children do not choose to have them. I personally have never believed anything else.

Examine the assertion

Let’s examine this assertion that “parents do not cause eating disorders” and the several lines of evidence that support it. It’s very important that the reader know that I believe the statement “eating disorders in general, and anorexia nervosa (AN) in particular, are not caused by parents” to be true, not because it is a nice thing to say nor because it is politically correct.  I believe it to be true because of our clinical observation of the patients themselves, and because of several recent lines of scientific inquiry supporting it.  It is important not to state such an assertion as a platitude, but rather to understand it as a founding principle for any evidence based treatment of children and adolescents suffering the ravages of these diseases.  And they are ravages.  And they are diseases.

It remains important to continue to review the issue of parental causation/non-causation in every forum dealing with eating disorders, for the (false) view that dysfunctional families cause them is not harmless and it was very entrenched. In addition to the unnecessary pain and guilt inflicted on the very people (parents) who are needed to be strong and proactive for successful treatment, the view of parents as the problem leads clinicians down flawed treatment paths, wastes clinical time, money and endangers lives.

Unfortunately, a review of the history of parent blaming is not of merely historical significance.  There are still professionals: dieticians, physicians, psychiatrists, and therapists who have not yet challenged the teaching they received during their training in the light of newer evidence.  They continue to be stuck in treatment paradigms that needlessly probe the guilt of families, functional or not, seeking to assign cause where none exists and ignore the new biology of the devastating mental illness (brain disorder) before them.

Evidence from the field of neurobiology

It is not possible to discuss the role of parents without reference to the neurobiology of eating disorders. The fact that there is a neurobiology to these illnesses is still news to some people. What does it mean to assert that anorexia nervosa, for example, is a brain disorder, as does Dr. Tom Insel, director of the National Institutes of Mental Health?(1)  Why does this concept of “brain disorder” arouse such mistrust and resistance from some professionals?  Is it merely that they are afraid that their own training deficiencies in biology and chemistry may eventually make their treatment approach seem inadequate? Partly, no doubt.  But I think that, most powerfully, the older view of mental illness dichotomizing “brain” and  “mind” is the real stumbling block. Some professionals (therapists) regard themselves as experts in the mind, others (neurologists) as experts in the brain.  Newer evidence has made us aware that brain is the key to mind, as substance is to shadow.  There is no escaping a greater literacy in neurobiology for any of us, regardless of our background. Eric Kandel, Nobel prize winning psychiatrist and neurobiologist states that “mind is a range of functions carried out by the brain”.(2)  When things go wrong in the brain, they manifest this functional loss as mental illness.  Mental illnesses, all of them, are brain disorders. This concept of “brain disorder” is crucial to understanding that parents do not cause eating disorders.  If there were no other lines of evidence pointing in this direction, the fact that they are brain disorders would tell us all we need to know. Whether or not AN, for example, is a developmental brain disorder programmed from intrauterine days as some suspect,(3) a primary derangement of neurotransmitter production and metabolism,(4) a result of a multitude of small genetic variations and errors (SNPs), or other yet-undescribed genetic or epigenetic variants, is not yet known.(5) The point is, none of these variations in physiological functioning can be caused by parents.  In other words, the take-home message that  biology sends us is that not only do parents not cause eating disorders, schizophrenia, autism, and other brain disorders, they couldn’t cause them if they wanted to.

Clinical and historical lines of evidence

Let us now look away from the neurobiological lines of evidence and towards the clinical ones, for they are equally powerful. Until very recent times clinical observation was essentially all we possessed to formulate treatment protocols.  And in retrospect, some of the greatest advances in science and medicine have been made by mere clinician observers, with little laboratory equipment, no external funding (except parents!) using only our most powerful, our simplest tools: imagination, curiosity and a rare ability to see old things in new ways.  Today we call this “thinking outside the box”.  For Charles Darwin it was the way his brain worked. Darwin did not have a great deal of success establishing himself as a young man in a professional field.  His father wanted him to study medicine, but he preferred geology.  For a while he studied theology. During his voyage as a roving naturalist and scribe aboard the HMS Beagle, which was to set the course of the rest of his life, he fundamentally altered science and medicine for centuries, Darwin collected dead birds and other animals, plants, rocks, and shells.  And he looked at them.  And he thought about them. Aided principally by a sharp dissecting knife and his notebooks, Darwin’s small observation that populations of birds from isolated islands diverged from their parent populations on the mainland in ways that could be tracked, seemed innocuous.  But it was to provide the foundation of his assertion that all animals had a population dynamism that included evolution and change.(6) Darwin helps us in our discussion here because he is the quintessential example of the acute observer challenging an old line of thought and dogma and changing the world.  The small observation that parents do not cause eating disorders and children do not choose to have them, changes everything we do in our field. Another, more medical, example of the importance to clinicians of seemingly small, new concepts, would be that of Ignaz Semmelweis. (7)  Dr. Semmelweis struggled with the thorny problem of the era: the fact that a very large percentage of women died in childbirth of “childbed fever”. Acting on intuition, instituted a basin of carbolic acid wash for the obstetric physicians to use before their pelvic examinations.  The death rate on his service dropped dramatically.  Countless lives were saved and continue to be saved through the “out of the box” thinking of this one man. Semmelweis spent the rest of his life defending his “outrageous” innovation from the medical establishment, vilified for suggesting that doctors themselves could have transmitted a deadly disease, despite the evidence. It took the rest of the century for other more highly placed scientists, such as Lister (8) and Pasteur (9) to demonstrate microbiological proof of the existence of “germs”. We do not have to be students of medical history to recognize the importance to our own practices of these two examples.  Whether we are dieticians, therapists or physicians great advances can be made using only the powers of observation given to us.  It helped me that Kartini Clinic was founded out of a general pediatric practice. As a pediatrician I saw every kind of family: highly functional, highly dysfunctional, and everything in between.  And guess what?  Once we began to observe parents of patients with anorexia nervosa, we saw every kind of family, not one kind, as had been taught for years. It turns out, the Emperor had no clothes: there was no “anorexogenic family”. This clinical observation, not yet supported by published studies (in fact, flying directly in the face of the commonly cited literature) was essential in establishing a treatment paradigm which involved parents in re-feeding their own child.

Evidence from an unusual source

Another, more unusual line of clinical observation helped us cement our belief in parents as part of the therapeutic solution, not the source of the problem.  Over the course of seeing somewhere in excess of 2500 children with eating disorders, we have had about four patients whose parent actively tried to give them anorexia nervosa. This is what is known as Munchausen by proxy (10), a mental illness resulting in child abuse.  Although the patients all presented with weight loss, and a reported aversion to food, on closer observation the distressing diagnosis soon became clear. The important take-away, however, is that these mothers were not successful in creating an eating disorder in their child even after prolonged enforced disordered eating.  The biology of normal hunger asserted itself as soon as the mother was removed.  Again, not only do parents not cause eating disorders, but they couldn’t cause them if they tried to (which in fact they did!).

Evidence from family-supportive treatment interventions

This brings me to the final line of evidence that families are not causal.  This would be the well-publicized efforts at Stanford University and the University of Chicago to institute a family-based treatment program, referred to as FBT, which operates on the principle that parents need to be in charge of and involved in re-feeding their child, and that, far from being the problem, as we say at Kartini Clinic, parents become a crucial element of the solution.  Stanford psychiatrist Dr. James Lock (11) and University of Chicago psychologist Dr. Daniel Le Grange have been able to institute a family-based program of re-feeding based on one developed at the Maudsley Hospital in London (12).  They have now followed their patients past the initial intervention and have begun to build the repository of evidence demonstrating definitively that families are not to blame for this illness.

References

1.  Insel T., Eating Disorders Review ?January/February 2007 Volume 18, Number 1. Group Advocacy, More Data, Will Improve Eating Disorders Research Funding

2.  Kandel E   Am J Psychiatry 155:4, April 1998   A new intellectual framework for psychiatry: Special Article

3.  Nunn K, Frampton I, Gordon I et al.  Eur Eat Disord Rev. 2008 Sep;16(5):355-60.  The fault is not in her parents but in her insula–a neurobiological hypothesis of anorexia nervosa.

4.  Kaye WH, Wierenga CE, Bailer UF et al.  Trends Neurosci. 2013 Feb;36(2):110-20. Nothing tastes as good as skinny feels: the neurobiology of anorexia nervosa.

5.  Bulik CM, Patrick FS  Arch Gen Psychiatry. 2006;63(3):305-312. Prevalence,  Heritability, and Prospective Risk Factors for Anorexia Nervosa

6.  Bowler PJ    Science. 2009 Jan 9;323(5911):223-6.   Darwin’s Originality.

7.  Wyklicky H, Skopec M.     Infect Control. 1983 Sep-Oct;4(5):367-70.   Ignaz Philipp Semmelweis, the prophet of bacteriology.

8.   Worboys M.     Notes Rec R Soc Lond. 2013 Sep 20;67(3):199-209. Joseph Lister and the performance of antiseptic surgery.

9.   Gossel PP  Hist Philos Life Sci. 2000;22(1):81-100.  Pasteur, Koch and American bacteriology.

10.  Flaherty EG, Macmillan HL   Committee On Child Abuse And Neglect: Pediatrics. 2013 Sep;132(3):590-7. Caregiver-fabricated illness in a child: a manifestation of child maltreatment.

11.  Lock J1, Le Grange D, Agras WS et al. Arch Gen Psychiatry. 2010 Oct;67(10):1025-32.  Randomized clinical trial comparing family-based treatment with adolescent-focused individual therapy for adolescents with anorexia nervosa

12. Treasure J, Russell G.    Br J Psychiatry. 2011 Jul;199(1):5-7. The case for early intervention in anorexia nervosa: theoretical exploration of maintaining factors