Autism, BPD, Eating Disorders

This is a completely unscientific exploration of connections between a few different diagnoses that has been helpful to think about for me. This will be a long one because there’s a lot to work through, but I think it’ll be interesting.

I’ve started to notice a lot of parallels between autism and borderline personality disorder, and have also seen that eating disorders or feeding issues are incredibly common comorbidities for both of those disorders. I’m curious about why that is, whether there is misdiagnosis going on, and whether BPD and autism might actually be more similar than most people think.

Let’s start with some facts. Autism tends to be coded male. There are far more boys with the diagnosis than girls, and it can be incredibly difficult for girls to get a diagnosis of autism (girls have a much higher age of first diagnosis than boys, and studies that independently measure symptoms found many undiagnosed girls). Some people have even gone so far as to say that autism is an “extreme male brain.”

The diagnostic criteria of autism are as follows:

A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive, see text):

1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.

2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.

3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

Specify current severity:

Severity is based on social communication impairments and restricted repetitive patterns of behavior (see Table 2).

B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):

1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).

2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).

3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g, strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interest).

4. Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

Specify current severity:

Severity is based on social communication impairments and restricted, repetitive patterns of behavior (see Table 2).

C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).

D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

On the supposedly opposite side of the spectrum is Borderline Personality Disorder, which is far more common in women, and in many ways is the modern hysteria. It’s diagnosed often in women who are seen as unruly or out of control, is an incredibly controversial diagnosis, and is seen as an extreme “female” brain.

The diagnostic criteria for BPD are as follows:

A pervasive pattern of instability of interpersonal relationships, self-image, and affects, and marked impulsivity, beginning in early adulthood and present in a variety of contexts, as indicated by five (or more) of the following”:

  • Frantic efforts to avoid real or imagined abandonment
  • A pattern of unstable and intense interpersonal relationships characterized by alternating between extremes of idealization and devaluation
  • Identity disturbance: markedly and persistently unstable self-image or sense of self
  • Impulsivity in at least two areas that are potentially self-damaging (e.g., substance abuse, binge eating, and reckless driving)
  • Recurrent suicidal behavior, gestures, or threats, or self-mutilating behavior
  • Affective instability due to a marked reactivity of mood (e.g., intense episodic dysphoria, irritability, or anxiety usually lasting a few hours and only rarely more than a few days)
  • Chronic feelings of emptiness
  • Inappropriate, intense anger or difficulty controlling anger (e.g., frequent displays of temper, constant anger, recurrent physical fights)
  • Transient, stress-related paranoid ideation or severe dissociative symptoms

So these two diagnoses appear to have almost no overlap. In fact they appear to be complete opposites in some ways (extreme emotional reactivity vs. restricted emotional expression). One of the things that is incredibly common in both of them though is misdiagnosis and stigma.

BPD is so stigmatized that some therapists intentionally misdiagnose to protect clients from stigma. However it also has many overlapping features with PTSD, bipolar, major depressive disorder, schizophrenia, and anxiety disorders. Men are often misdiagnosed with Antisocial Personality Disorder or substance abuse. Autism is often misdiagnosed in women as ADHD, bipolar, depression, anxiety, or OCD. There are a few odd things about these high rates of misdiagnosis, the first being that two disorders that appear to be diametrically opposed could have so many similar misdiagnoses.

If we go beyond the strict diagnostic criteria, the behaviors of BPD and autism can look surprisingly similar, especially when we look at how girls present autism. From a Guardian article on autism in girls and women:

“‘Autism is seen as a male thing, and boys are often physical in expressing themselves when unhappy, whereas girls implode emotionally,’ says [Sarah] Wild [head teacher at a school for autism]. ‘Boys tend not to be interested in contact and friendship, whereas girls desperately want friendship, they become obsessed very easily if they focus on someone as ‘theirs’ – whether a girl or a boy – and they yearn for boyfriends.’

Girls with autism are likely to worry about body image and get very involved with TV series and celebrities, says Carol Povey, director of the NAS’s centre for autism. And there is a clear association between autism and eating disorders, as a report by Cambridge University’s autism research centre, led by Professor Simon Baron-Cohen, notes.

While boys tend to be diagnosed as young as three, late diagnosis can be a problem for girls, whose behaviour can be dismissed as “teenage hormones”. ‘They are full of emotion and implode into isolation and depression if things go wrong,’ says Wild. Things seem to start going really wrong at about age 13, she says, when many become school phobic.”

These differences end up creating a very different picture of autism in girls and women than in men and boys, one that looks far more similar to BPD. Both diagnoses can include serious self harm or suicidal ideation, controlling behaviors (especially in relationships), black and white thinking, feeding issues/eating disorders, trouble with social situations (including anxiety), depression, and sensory issues. For those with BPD, life often feels like it’s lived without an emotional skin, and that can come with strong reactions to sensory stimuli. For those on the spectrum with strong sensory seeking needs, behaviors can start to look impulsive. BPD tends to be diagnosed during the teen to early adult years, and girls also are likely to get an autism diagnosis in later childhood to early adulthood. And in both cases, the lack of a diagnosis can be a huge source of frustration, confusion, depression, and welled up emotion.

Another similarity is the diversity of presentations of each of the two disorders. Because of the way criteria are structured within BPD, it’s possible for two individuals to both have the diagnosis and only have one overlapping trait. Autism is similar in that it affects multiple areas of functioning, which means there are thousands of different permutations of symptoms and behaviors that can appear.

Both BPD and autism are distinctly underdiagnosed, with more men having trouble getting a BPD diagnosis and more women struggling to get an autism diagnosis. From http://psychcentral.com/news/2009/05/25/borderline-personality-disorder-difficult-to-diagnose/6070.html

“The study included 70 adults who met the criteria.

All had been given a diagnosis from the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) in the past and had also seen a mental health professional in adulthood or been prescribed a psychotropic medication.

Yet, 74 percent of the patients who met the criteria for the condition had never been diagnosed with borderline personality disorder in the past, despite an average of 10.44 years since their first “psychiatric encounter.”

What’s hisface examines many of the ways that BPD and autism can look similar: explosive anger or meltdowns, intense relationships mixed with difficulty getting close to many people, serious miscommunications. If you look at an individual who self harms, has serious anxiety and anger issues, attaches to one person and has difficulty connecting with others, is incredibly sensitive, and who sometimes engages in intense and seemingly odd behaviors to fulfill stimulation seeking, would you assume BPD or autism? Because it could go either way.

Of further interest is the fact that BPD has incredibly high rates of comorbidity with eating disorders. There is good evidence that women with anorexia have autistic traits, and that individuals with autism are at high risk of developing eating disorders. Some studies have even shown comparable levels of emotional processing and executive functioning between those with anorexia and those with autism. Feeding disorders are also incredibly common with autism.

Most of my interest in autism came initially through the lens of eating disorders. Difficulties with textures, rituals around food, OCD, and other highly controlling behaviors are incredibly common with eating disorders. These kinds of control oriented behaviors are hallmarks of autism.

Control is not a word that most people associate with BPD, but I’m not sure why. In my experience, the more out of control someone feels, the harder they try to cling to control. All of the BPD symptoms that I have are the things that have pushed me to develop intense rituals and rules for myself, out of fear that any deviation will lead to complete chaos. Others who have comorbid BPD and eating disorders that I have spoken to (entirely anecdotally) have also felt that they use the control of the eating disorder to cope with the intensity and chaos of the BPD.

Also anecdotally, many of the folks that I’ve talked to on the spectrum talk about having rituals so that they can feel more in control when they are overwhelmed by extreme sensory input or because of difficulties with theory of mind. The OCD tendencies that I have and the information that I’ve read about OCD indicates that rituals, control, and rigidity in OCD also stems from a fear of being out of control, a fear that the world could change or fall apart or go wrong in some unknown or drastic way if you do not engage in the rituals. Chaos is often what leads to extreme control.

For those on the spectrum, that often comes in the form of social interactions that make no sense and sensory input that is overly intense. I’ve also heard many on the spectrum say that in contrast to the assumption that they have no empathy, they actually have an excess and simply can’t figure out how to make other people happy or feel better. The emotional elements of this explanation ring familiar to someone with BPD: other people seem unpredictable, swinging from perfect to evil in a day. You just want to be good enough, kind enough, the best possible person so that no one will be sad or unhappy or angry or want to leave you.

Especially of interest to me are the sensory elements of BPD, which I could find almost no research about at all. BPD is well known for coming with extremely strong emotions, but in my personal experience, that often comes with sensory sensitivities as well. Emotions aren’t just experienced in the head: they’re experienced in the body. I have to regulate my food and sleep extremely carefully in order to be functional, I have strong reactions to textures, and as someone who is often overwhelmed by my emotions I can’t handle crowded, loud, or otherwise overwhelming places very well.

And when you add in an eating disorder to BPD, you get some serious sensory sensitivities in the form of taste, smell, and touch (often aversions). All together it makes me wonder if BPD and ASD are all that far apart, or if they both might be pointing to a variety of disorders that look similar but have different etiologies. I wonder if some of those disorders overlap, and gender is playing a big role in who gets what diagnosis. I wonder whether concepts like a sensory diet could be helpful for those with BPD or whether learning concrete social skills like setting a boundary could be helpful for those with ASD.

Obviously all of this is speculative, and it seems unlikely that BPD and autism are the same thing. But I do think that the strict delineations between personality disorders and autism, or simply the received knowledge of which disorders are “like” which other disorders might not be helping folks get accurate diagnoses or useful treatments. There are more crossovers than appear at first glance.

How Do We Talk About Eating Disorders?

I’m currently working on a post for Teen Skepchick about eating disorders in a cross cultural perspective. At the moment, I’m just in the research stage of this post, so I’m reading a lot about the research that’s been done about cross cultural eating disorders and about the differences in symptoms, causes, and etiology of eating disorders in different cultures.

And I have to say that I am deeply upset by the way we talk about eating disorders. I am particularly upset because I’ve been reading academic articles, pieces by graduate students studying psychology, and other articles that are surveys of the literature on eating disorders. These should be held to the best standards we have. Unfortunately, no matter where I look (except for in very particular blogs written by people with eating disorders, particularly Science of Eating Disorders), I hear the same things over and over and over again:

“When we expose our girls to thin models and beauty ideals they develop eating disorders”

“Girls of African American descent aren’t likely to get an eating disorder because their culture values voluptuous bodies”

“Eating disorders only crop up in other countries as they become infiltrated by Western beauty ideals”

I am SO sick of the conversation around eating disorders being dominated by conversations about models and images of women in the media and the desire to be thinner. It cannot be that difficult for people to understand this, but I’ll say it again: an eating disorder is a mental illness. It is not a diet. It is not even an extreme diet. It is not a desire to lose weight. It is a coping mechanism to deal with difficult things in your life that you can’t cope with otherwise.

There is VERY little evidence that eating disorders are caused by skinny models. What there IS evidence of is that eating disorders are caused by low self-esteem, family disruption, trauma, other mental illnesses (depression, anxiety, OCD, BPD, bipolar, and addiction are common), abuse, or other difficult situations that you need a way out of. It is such a cliche by now that eating disorders aren’t about food, but I cannot stress it enough: eating disorders aren’t about food! They aren’t about looking pretty or beautiful. I have YET to meet someone with an eating disorder who says they just want to be pretty. I hear them say that they’re depressed, that they can’t cope, that they’re lonely, that they don’t feel acceptable when they’ve eaten, that they feel out of control around food, or that they use food to numb out emotions and manage other parts of their lives.

It is not helpful to keep refocusing the conversation on how someone’s body looks and the beauty ideals. This continues to reinforce them as what’s important, and it focuses the issues on the body again, instead of addressing whatever mental stress has occurred. It simplifies the matter to a point that is unhelpful, and makes treatment and self-understanding very difficult because it doesn’t allow us to reach the real etiology of the disease. It even reinforces those negative suggestions that a woman’s worth is in the beauty standards she does or does not strive to live up to.

Instead of these things, it would be far more helpful to talk about the sexism that makes women feel inadequate no matter what they do, or the bad family systems that don’t allow for good communication or healthy emotions, or the abusive relationships that many women are in, or the trauma and depression of daily life, or the failure of our mental health system to provide us with good coping techniques for when we do start to feel over our heads. If we want to talk about cross cultural eating disorders, maybe we should talk about the different family roles that exist, the different expectations of women in different cultures, the common mental illnesses in those cultures, the differences in guilt and shame in different culture (these feelings are huge in eating disorders), and the relationship that these cultures have to food as symbolic, relational, or positive.

Eating disorders are mental illnesses. They are not an attempt to be skinny. They are not a reaction to the media. They are not the desire to look like a model. They are serious. They are life-threatening. They are painful. They come with depression, constant mental stress, trauma, self-hatred, difficulty with relationships, isolation, loneliness, feelings of guilt and inadequacy, and all sorts of things that ARE NOT simply reactions to the media, but are about how we relate to ourselves and how we relate to others. Can we please start talking about them in terms of the mental situation of the individual suffering, because that is what makes something a mental illness?