Spoiler warning: Jessica Jones
Content warning: addiction, rape, PTSD, mental illness
Content is below the cut to help with spoilers and triggers.
Spoiler warning: Jessica Jones
Content warning: addiction, rape, PTSD, mental illness
Content is below the cut to help with spoilers and triggers.
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”:
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.
Eating disorders are about bodies. Duh. They’re about fat and losing weight and body image and skinny models and photoshop. Wait, what? That’s not right. Eating disorders are about the experience of being in a body, the limitations and lack of control that being embodied necessitates. Much better. I’ve been wanting to write about this article at Science of EDs on embodiment for quite some time, but I haven’t known exactly what to contribute beyond “yeah, that!” The article looks at a study of embodiment in which participants rated how much they experienced their body externally, through the feedback and sight of others, through objective measures, or through physical ways of controlling their bodies. Unsurprisingly, high scores on these measures were correlated with eating disorders.
When I read this, I felt a resonance with these experiences and questions: yes, what drove my eating disorder was a feeling of discomfort with having a body, an inability to imagine how my “self” fit into that body, a confusion about how my body actually fit into people’s conceptions of me, and a kind of certainty that the only time I really was in my body was when I was doing something to it or with it. But embodiment has always meant more than that to me. Having a body means you will die. That’s a pretty basic fact at this point in time (although there is the potential that through technology we will change it). Having a body also comes with a variety of limitations: you can only be doing one thing at a time, be in one place at a time, you are bounded by temporality and space. Even if you’re a highly capable person who can probably accomplish nearly anything they try, your embodied nature says that you can only try a limited number of things.
Bodies, and particularly bodily functions (like eating) are a constant reminder of these facts. For much of my life, I have not been able to stand being present in my own body (aware of my senses, my location, my body) because it was so limited. Some people are able to accept these limitations without struggle. Some people don’t find that being in a body is a constant reminder of their miniscule nature in the entirety of reality. But many of the people that I have met who also have eating disorders are the kinds of people who have been told their whole lives that they can do whatever they put their mind to, that they can do so at a high level of accomplishment, and that they can change the world. The perfectionism that this breeds hates limits, even ones that are utterly reasonable (like not being able to live forever).
Some people have certainly wondered why those with a high drive for control and perfection choose their bodies as the realm on which to enact their personal battles. The experience of embodiment as mortality and limitation gives a good window into this connection. It might seem that the whole world is not within our control, but the most basic level at which we have no control is the fact that we are embodied, our bodies do things we don’t want them to, we can get sick and die, and having a physical presence inherently limits the ways that we can affect the world.
It’s quite possible that few other people with eating disorders are consciously aware of hating their body because it represents the fact that they cannot do everything they’ve been told they could; I cannot cure cancer and reconstruct Proto Indo-European and become a bestselling author and be a feminist/atheist activist and play taiko for a living and learn neuroscience and solve the problem of consciousness and star in an amazing TV show. I have to pick and choose, and knowing that I am giving up on some potential opportunity is painful. But even if others don’t consciously recognize that the reason they can’t do all this is because they are physical beings, on some level I suspect they feel it: it comes out in the guttural anger at the body and at the failings of the body, it comes out in the unrealistic expectations of perfection in every way, it comes out in the unnaturally high achievements and the insistence that slack is for other people.
Embodiment might be at the heart of all eating disorders, but not because of bad body image or a struggle to reconcile self-image with the perception of others. Somewhere in there, all of us want to be little gods, capable of anything. Bodies will always remind us that we never can be.
One of my most favorite people in the world, Elyse MoFo Anders, recently started a project called Operation Flawless. Go check it out and participate if you feel the urge. I’m having tons of fun with it already. The basic gist of the project is to intentionally post selfies of yourself looking less than flawless to highlight the impossibility of beauty standards and to recognize how important and powerful self-portraits (selfies) can be. As I’ve participated in this project, I’ve come to a realization: I love selfies.
This might come as a surprise to many of you. I’ve spoken many times before about my insecurities and my unhappiness with my looks. But no matter how much I dislike looking at myself in the mirror, I love seeing pictures of myself. I feel so much more comfortable when there’s a distance between myself and the image of myself, so that I can be somewhat more objective when assessing myself. I would rather look at a picture of myself than see myself in the mirror any day. I can manipulate my pictures, delete my pictures, only keep the pictures I like, only look at the pictures from when I looked happier…I can control pictures.
But more than just the medium, I absolutely adore being able to take pictures of myself. Selfies are sort of like the ultimate form of power over how others see you and over how you see yourself. It’s kind of lovely. When I take selfies I get to decide how I’m lit, what I’m wearing, whether I wear makeup, how my hair is, the background, and pretty much everything else. And on top of that I get to continue taking pictures until I find the one that I think is exactly perfect and how I want to look. I can play model, try to smize, find the exact quirk of my mouth that makes me look snarky/sexy/happy.
Perhaps my favorite part of selfies is that I get to pick what’s important in my life and capture that moment for y’all to see. When someone else is taking the pictures, they’re in the driver’s seat. You’re doing something you think is embarrassing or boring? Oh look there’s a picture! You’re drifting somewhere else and not really present? Yup, picture of that too! You’re stuck somewhere you don’t want to be? Mmhmm, everyone knows. When you’re taking the pictures, you get to pick. Not all of you will understand. Sometimes I take pictures of myself sitting at Caribou, sometimes hanging out at home doing nothing. More often than I should admit there are cats in my pictures. I take selfies when something I want to share is happening. It’s my visual diary. It reveals the things I do often, or the things that are exciting and important.
Unfortunately I often find (especially lately) that I’ve stopped posting selfies unless there’s a “reason”. I’ve internalized well enough the messaging that just posting pictures of yourself is trite, self-absorbed, juvenile, or wrong in some way. On some level it seems to say “I don’t have anything better to post”. Well bullshit on that. Me, myself, and I are worth posting. The times that I care about are worth posting. I don’t need to live up to anyone’s standards of worthiness on my own Facebook page or Twitter. It’s not narcissism to share my own image of myself: that’s the entire point of social media.
I’m taking Elyse’s invitation to personally reclaim the selfie. I love seeing my face plastered all over the internet and if no one else will do it for me, then gosh darn I’ll do it myself!
I’m having a rough day today. I’ve gotten in a number of heated arguments on facebook. These are not my favorite forum. I have a hard time disconnecting, and a hard time not getting emotional about things that mean a lot to me. Like the fact that sexism and racism are institutional things, not individual actions (dumbasses. Figure it out. Calling someone a dick is not the same as years of disenfranchisement, discrimination, beating, and abuse). I’m upset right now because people are playing on my emotions purposefully, while I have always tried to argue in all good faith. I don’t appreciate when people try to fuck with me just to make a point.
So I’ve gotten a bit emotional. I’m shaky. I can barely type straight because my hands are shaking. I don’t like it when people purposefully push me this far.
But I also think it’s important to try to come to some understanding of whatever a debate is about. I like closure. I did actually get to some points of understanding between myself and the people who were not agreeing with me. So despite being really upset, I don’t want to simply walk away from situations that upset me. I know that part of my inability to walk away is that I want to win. I want a conclusion. And I know that others want that too. I should stop. I really really should. It’s not accomplishing anything when I get upset. And it’s not accomplishing anything for me to “feed the trolls” as it were.
So how do I continue to advocate for my own position, defend myself, and stay calm? How do I continue to respect people (which is something I’ve been trying REALLY REALLY hard to do–Shawn, I really hope you feel I have, that’s always been my intent), while also respecting myself and bringing up controversial and critical points from the position of a minority group (either women or atheists?) How do I also listen to other people’s experiences and respect those?
I really don’t know. I think that I may be too sensitive to really engage in a lot of online debate. I think that every individual who wants to engage in activism needs to take a hard look at their own personality and decide what level of vitriol and anger they can take from others before deciding how far they want to engage in debate.
I’m starting to recognize that many times the greatest form of activism is taking care of myself and respecting myself. But oftentimes I don’t feel like that’s enough. I want to be able to pave the way for other people who are like myself have the space to express their opinions and their selves.
So what do you do when you get upset in online debates? I often find that talking to someone else and making sure I’m not crazy (because people love to gaslight me) helps a lot. I also find that having sources to back me up is really helpful so that I don’t have to do as much of the speaking myself. It helps to stay calm when I engage with something else at the same time as I am engaging in a debate, or if I self-soothe at the same time (pictures of kittens are good). What do you guys do to help calm yourself down in a debate? How do you deal with it when you become upset or frustrated? How do you continue to engage in activism or in debate when your fight or flight instincts start kicking in?
Staying calm is really important in my mind. I was spending some time defending the place of mockery in the atheist movement. I do believe that it’s ok to mock certain beliefs (transubstantiation anyone?) but I think there’s a time and a place for it. My family and I had a Holy Saturday celebration this past week in which we made pope hats to be silly about the new pope (some of us also chose pope names and dressed up in Argentinian garb). This was a private celebration that didn’t attack anyone, but did mock a bit of the ritual in the Catholic church. I think it was fine because it was a bonding activity, and it was highly enjoyable for us. When I’m trying to present myself as the face of an activist group or trying to understand another person’s beliefs or explain my own, I don’t find it helpful to use mockery (some people can do this to great effect. I personally don’t like it).
And so when I’m trying to engage in a discourse (which is different from personal and private enjoyment, or simply throwing something out there), I don’t want to get upset, get angry, personally attack people (which I never think is ok), or lose objectivity and clarity of thought. I want to be able to understand my emotions, use them as fuel for my arguments, but not necessarily let them skew my arguments: make sure that each of my arguments fits the facts, and proceed from the facts as best I can. It’s difficult because I exist in a realm of social justice understanding that many other people don’t inhabit. It’s hard to have to try to explain all of the assumptions that I come in with that I have spent a great deal of time thinking about and coming to conclusions about. It’s frustrating when people dismiss those assumptions despite the fact that I have read pages and pages about them. It’s hard to sum all of that up in a few sentences. It’s hard not to get frustrated when people bypass all of the thoughts that are going on in your brain, or assume that you haven’t already thought things through.
If and when I have time, I would like to start a series that addresses some of these assumptions that I hold: these include things like intersectionality, the nature of racism and sexism, how language changes, privilege and power, and other things. I suppose I could have linked to my privilege post already, but I’d like to have a ready set of them to send to people to give the background of my thought processes. Let me know what things you have a hard time explaining to others, and I’ll see if I can provide a cache of basic explanations of a number of social justice concepts that often get misunderstood or subject to ridicule.
In the meantime, I’m going to try to stay out of facebook debates, because it’s started to get triggering to me and I’ve begun to dissociate when they happen because I feel like I need to quash my emotions and that is really unhealthy for me. If people work purposefully to get me upset and I have to force myself to not react to direct attacks, that’s not healthy. It’s not the kind of activism I want to engage. I’m allowed to be angry about oppression that affects me.