Neurotypicality Is Not the Goal

Disclaimer: the person and tense in which I write in this post change throughout because I found myself fairly distressed trying to figure out who I was speaking to. Basically if you’re anyone who has any influence over someone who is neurodivergent and their treatment, pay attention.

Earlier this week I posted about some of the downfalls of ABA and was rightly called out on the fact that I forgot to include one that is incredibly important: ABA often pushes autistic people to behave more “normally” just for the sake of being less autistic.

This is a larger issue than just the autistic community. This affects everyone who is neurodivergent or mentally ill in any way. Because while the goal of therapy is ostensibly to help people live content and healthy lives, many therapists often forget that what they perceive as “good” or “happy” isn’t necessarily what their clients want. That means that acting neurotypical often becomes the goal. This is especially true for kids or other populations that can’t easily advocate for themselves, like people who are nonverbal.

Think for a second about treatment for people with autism. This is one of the easiest examples to use, because many “autistic” behaviors are very visual and obvious, but don’t do any harm to anyone. That includes things like hand flapping, spinning, or rocking. Many treatment plans include a goal to decrease these behaviors. Why?

Well there might be a few reasons. If someone is in school it’s true that these things can be distracting to other students. But NOT doing them is distracting to the student with autism. So why do neurotypical needs get prioritized over neurodiverse ones? And some stims aren’t even distracting but are still seen as bad because they make the person look different.

There should be one guiding principle in all treatment: has my client communicated that this behavior is something that makes their life worse? VERY occasionally this comes with the addendum that if a client can’t see that something is harming them you still might need to try to get rid of the behavior, but I can only see that applying in physically dangerous cases like self harm, extreme caloric restriction, purging, drugs, etc.

But the point of therapy isn’t to “cure” people. It’s to make them healthy. Healthy is not the same as normal, and often doesn’t mean living without any kind of mental differences. Healthy means that you can live your life in the manner you like and mostly achieve your goals. It means your life is the way you would like it to be, at least in the really big ways. Most if not all people who deal with any serious neurodivergence do that while also continuing to live with their neurodivergences, because a brain that is wired for anxiety or depression or OCD or a personality disorder doesn’t stop being wired that way. At best a person can hide it.

Hiding the way your brain works and trying to behave in ways that are counter to the way your brain works is painful and unpleasant. So again, let’s go back to the goal. WHY do you want to change a behavior? Is it because differences make you uncomfortable? Is it because you think that it must make the person unhappy? Is it because you think it’s making their life more difficult?

I have two words for you: communication and consent. I think many treatment programs forget to communicate with the client. Because that communication can help you find out why someone is doing something. What purpose does it serve? Do they like it? If so, leave it alone. If not, you still need to help them find a way to serve the same purpose. And if your client doesn’t want to change something then you don’t get to decide for them. Just because someone is neurodivergent or mentally ill does not mean that they cannot make their own choices, or that they don’t have preferences, or that they can’t tell you what upsets them and what doesn’t. Your perception of better or worse is irrelevant.

Being “normal” does not necessarily mean better. What is important is making sure that people are doing things that make them happy, that aren’t held back by their brains, that they aren’t hurting. It’s to give people the best life possible, which does not mean the most neurotypical life possible. It means a life that makes THEM happy.

Now of course for some people sticking out is unpleasant, and if they don’t like being different then by all means it’s no problem for their treatment goals to include looking more normal. But consent is the basis for all of this. Do not try to change someone’s brain without their consent. That’s called manipulation and it’s abusive and cruel and unnecessary.

The end goal isn’t neurotypicality. It’s happiness and fulfillment. It’s a life that someone with neurodivergence likes. What providers miss when they prioritize neurotypicality is that they might be actively hurting someone finds it easier to behave in a different way. If you need to stim and you can’t, it’s uncomfortable and sometimes painful. If you have extreme anxiety and socializing outside of your social circle is intensely anxiety provoking, it makes sense that you’ll want a small, close group of long term friends instead. If those people are forced to behave like “normal” people, they will be less happy and less capable of functioning.

This is why providers need to learn to ask questions more often: what do you want? Why? And then they need to learn to give their clients the time and space to give informed consent to their treatment. Even people who are non verbal. Even people you assume can’t understand. They still deserve the basic respect of having their desires for their life heard. Always. And your assumptions about what makes them happy are not more important than what they actually want, even if that means they’ll look autistic or anxious or delusional for the rest of their lives.

What It’s Like: Borderline Personality Disorder

I just recently read a post by Ozy Frantz about what it is like for them to have BPD. I also have a BPD diagnosis (although I have BPD traits rather than a full diagnosis of the personality disorder. For more info on the difference see here), but it got me thinking that I don’t very often talk about the overall experience of what my different diagnoses mean for me. I have a big ol’ mix (EDNOS, major depressive disorder, generalized anxiety disorder, and BPD), but there are definitely different strands that I can pull out that seem to correspond to each.I was also surprised to find how good it felt to simply read another person’s general description of their symptoms.

So in the next few days I’m going to be spending some time in my own head (big surprise I know), talking about what it’s like to experience these different mental illnesses. Disclaimer: I can’t speak for everyone. My experience of each will be determined by all sorts of things, not least the fact that I have quite a few comorbid disorders. But I do want to make a space to talk about the overall experiences rather than particular issues that have set me off on a day to day basis.

I’m going to start today with borderline personality disorder. One of the most common descriptions of being borderline is that it’s like living without emotional skin. People with borderline tend to be highly reactive. Let’s say everyone starts at a baseline of relatively neutral emotions. For me, any stimulus will result in my emotions spiking higher than most other people’s, and I also have a really hard time returning to base. This means strong emotions that last for an unnecessary amount of time. For many people this includes extreme anger, but I’ve developed the great coping strategy of just only ever getting angry at myself because the strength of my anger and a family history of anger problems means I’m terrified of being angry.

One of the things that’s most frustrating about BPD is that I can be entirely aware that I tend to overreact and still have extreme emotions, which leaves me struggling to figure out where reasonable is.

Another classic symptom of BPD is self harm, which I’ve been free from for almost four months (woohoo!). Typically I use it to regulate either extreme emotions or extreme dissociation. Speaking of dissociation, welcome to another fun part of having BPD. Dissociating is essentially letting your brain leave your body or feeling like you’re not inhabiting your body. Most people do it on a really low scale in the form of daydreaming, but in extreme forms people can forget what they’ve done for hours at a time. I tend to simply shut down when things get overwhelming. I fall asleep, I can’t move my body, I just turn it all off. It’s scary, since I’m never entirely in control of it, and it often feels like being trapped just outside of my head without any way to get back or influence the world around me.

People with borderline also tend to have two problems that are really tied together: difficulty holding together a self identity and an intense fear of abandonment (also found in the form of either deifying or demonizing people they’re in relationships with). I have always had trouble with knowing who I am, and I have this suspicion that I forget that I really exist when there’s not someone looking at me or talking to me or reminding me what I am. This might be why I write so much because it’s solid evidence of who I am and what I think. But I really define myself through my relationships and through the perceptions that others have of me. Again, this goes back to the idea that I can’t figure out what “average” or “normal” or “reasonable” is, so I don’t know if I’m particularly smart or particularly clumsy until someone else tells me what normal is and how I fit in. Similarly to cutting anger out (unless it’s directed at me), I also tend to take all of the negative feelings I have towards people and turn them towards myself instead, so I very rarely switch from deifying to demonizing and instead just make lots of excuses for bad behavior.

Like a lot of other borderline people, this means I can be somewhat manipulative. I’m highly, highly aware of it at this point and can see myself coming up with useless little tests (did that person text me first? If I don’t tell them I’m upset are they paying enough attention to tell? Do they care enough about me to demand that I take care of myself when I’m resisting?), so I’ve started to combat it by being as ridiculously open as possible with people I’m in close relationships with and calling myself out. Hopefully this is some evidence that a diagnosis of BPD does not condemn one to a life of being a manipulative asshole, as there are some evidence based skills to help out.

Last but not least, I also feel really empty a lot of the time. Possibly because I have a hard time knowing what appropriate goals are, or because I think everyone actually hates me and is going to leave me, or because I really just don’t know who I am (and for a lot of silly philosophical existential reasons about whether there’s a point to being alive), I feel very hopeless and I’m often overwhelmed with a kind of despair. This might also just be depression, but there is a certain flavor that I think is borderline and that tends to come with being bored. It’s a feeling of terror that nothing will ever change, that my mind won’t stop treating me like crap, that there’s just too many feelings and thoughts in me to just exist. I’m really, really bad at being bored, and I start to get very self-harmy and very twitchy and very desperate to do something worthwhile the moment I get bored.

I’d love to hear in comments from anyone else about their experiences with BPD. Do these things ring true for you? What’s different?

Mental Illness Isn’t Your Scapegoat

Let’s get the obvious out of the way: abusive relationships are horrible. We should do everything we can to provide people with information on what an abusive relationship looks like, how to get out of one, and how to stand up for yourself and your boundaries, as well as support for those who are trying to escape an abusive relationship.

There are many good resources out there on how to recognize unhealthy behaviors. There’s also lots of people out there doing work specifically with women and girls to remind us that we don’t deserve abusive relationships.

What is not a good response to abusive behavior is blaming mental illness. I can’t believe I have to say this, but it is 100% possible to have a mental illness, really any mental illness, and not be abusive. This includes individuals with Borderline Personality Disorder, Narcissistic Personality Disorder, and Antisocial Personality Disorder. Pointing towards abusive behaviors as intrinsically linked to any of these disorders is not backed up by facts (there are many abusers who use all of these same tactics and do not have any mental illness), and throws the rest of the individuals with mental illness under the bus in order to advocate for abuse victims.

This article at Self Care Haven has some great information about techniques that many abusers will use. Unfortunately, it couches it entirely in language of “narcissists” and how those individuals behave, rather than recognizing that any abusive individual can make use of these tactics (and many do), and recognizing that a diagnosis of Narcissistic Personality Disorder is not a life sentence to being an abusive person who cannot have real relationships.

Abuse is a pattern of behaviors and interactions. It is not a personality. We don’t get to simply label any behavior we deem bad as “mental illness” in order to ignore how we as a society have contributed to it or in order to brush off any support we could provide for someone to change. I am all for speaking openly about mental illness and the challenges it can present in relationships and everyday life, as this is the best way to improve treatment and diagnosis of mental illness, but more often than not we use the label of “mental illness” to close a conversation about a difficult or painful topic.

Gun violence? They were mentally ill. Start a registry.

Domestic abuse? Mentally ill. Don’t date people with personality disorders.

Do you just disagree with someone? They’re probably mentally ill too.

Here’s the truth: even the personality disorders that make it most difficult to hold down relationships are not a life sentence. Borderline Personality Disorder, which has long been seen as the land of the manipulative and angry, has an evidence based treatment that has high success rates. Many people with BPD have totally functional lives with families, jobs, and everything else a healthy human being might want (ok, maybe not everything, but they lead fairly boring lives for the most part).

There are absolutely highly functioning individuals with Narcissistic Personality Disorder, or Antisocial Personality Disorder. There’s evidence that Cognitive Behavior Therapy can reduce symptoms and increase functioning, allowing patients to form better and healthier relationships. More study is definitely needed, but instead of broadly labeling personality disorders (especially ones that already come with a lack of empathy and distrust of others) as breeding grounds for abusers, perhaps we could put some effort into finding treatment for people who have these disorders.

None of this is to say that people who have mental illnesses should be excused of abusive behavior. But providing information about abusive behaviors and giving tools and support to victims is not mutually exclusive to providing mental health treatment options to abusers, and absolutely does not require that we assume a certain mental illness necessitates abusive behavior.

There are some parallels here to threats of suicide or self harm. If you have a mental illness, there is a possibility you will feel urges to enact these behaviors. Letting a partner or friend know that you are feeling the urges is definitely a good idea. Threatening the behaviors in order to get your partner or friend to do something is not ok and cannot be excused by mental illness. The urges are the same, the behaviors are different, and choosing the healthier route is a skill that can be learned. Similarly, the urge to use and manipulate people might be a hallmark of a personality disorder, but the urge doesn’t necessitate the behavior.

We can do better in how we talk about abuse.

Medicalizing Difference: A Study in Oppressive Language

I was perusing the asexual blogosphere the other day and ran across this fairly disturbing post that looked at an abnormal psych paper. This paper was proposing a potential new diagnosis to be added to the DSM, which they term “Nonsexual Personality Disorder”. While this is the first I’ve heard of someone literally terming asexuality as a disease, it is not uncommon for people to medicalize it or treat it as something which needs to be fixed.

I’ve spent a fair amount of time with DSM definitions and looked at a lot of problems with the ways we currently define mental illness, but even one glance at what this person proposes as the definition of Nonsexual Personality Disorder tells me that this is a horrible definition for many reasons. At its root, it says that this is different from normal and thus it’s bad without actually taking into consideration whether or not the difference is harmful to anyone. This is the same thing that happens to people who are gay, people who are extremely sexual or kinky, or all sorts of things that constitute “different”, generally from the privileged and well off majority.

Looking closely at the definition, we can pull apart what’s wrong with it and see how medical language is often used to oppress difference. This particular case is a doozy as it manages to pack in all kinds of oppressive tendencies that happen to many different people, so this should be fun.

Let’s start at the beginning shall we?

“A.  A marked inability to experience sexual attraction, beginning in early adulthood and indicated by 5 or more:”

As far as I’m aware there is no other diagnosis in the DSM that hinges exclusively on the lack of one experience. Oftentimes an inability to feel certain things are part of a diagnosis, but rarely are they the whole diagnosis because the whole point of the diagnoses in the DSM is to have a way to treat something that is causing harm or lack of functioning in someone’s life. There is no need for sexuality to be able to live a happy and fulfilled life and this whole diagnosis rests on the idea that if you do not have sexuality in your life then there is something empty or unhappy about your life.

Moving on:

“Inability to interpret sexual signals”

Now there are all kinds of symptoms listed in the DSM that people who are not mentally ill have but that only become signs of mental illness when they move into a realm where they seriously inhibit someone’s functioning or lead to high distress. Now I can imagine how you might get into some awkward situations if you can’t interpret sexual signals, but overall it doesn’t seem like the sort of thing that should be medicalized: it’s pretty damn normal and unless the other party involved also has some difficulties with reading emotions it should just mean that you don’t get into sexual situations. Oh no. How horrible.

Another way this sort of symptom was used in the past was in medicalizing lesbians. If you can’t interpret or don’t respond to a romantic overture, there’s something wrong with you. If you can’t follow the scripts that have been laid down, there’s something wrong with you, something that needs to be treated. In reality, it may simply be that you follow your own script or no script at all and that’s totally ok.

“Uncomfortable in intimate situations with a partner”

So I have a serious problem with this particular criterion because this whole disorder is circulated around an inability to feel sexual attraction. That implies that the intimate situation here is sexual. That’s a whole lot of assuming that the only intimate situations you’d ever be in would be sexual. There are all sorts of intimacies and personally I think it’s a bit gross to eliminate them all because SEX. There are also many, many people who are uncomfortable in sexual situations with partners for a variety of reasons and this criteria doesn’t touch on ANY of them (including abuse, PTSD, different priorities, etc). It also doesn’t specify frequency of discomfort, which seems important as probably everyone has felt uncomfortable in intimate situations at one point or another.

Generally discomfort at a situation is only diagnosable when you need to be able to function in that situation in order to have a complete and fulfilled life. I think there are many people out there who could attest that sex is not necessary for a complete and fulfilled life with intimate relationships, which makes this criterion really bizarre. There’s really nothing wrong about having discomfort or preferences against some stuff, and saying that we all need to be comfortable in the same settings is really a set up to oppress some people. Yes, being uncomfortable in all social settings or all settings outside of the house might be something that really interferes with your life, but sexual situations are specific, private, intimate, and unnecessary for day to day functioning.

If you’re really not interested in something and another person tries to get you to do it, it is 100% reasonable to feel uncomfortable. Generally we only want to label something as mental illness if the emotions or reactions are far outside of reasonable or logical.

“Avoidance of situations in which sexual activity may occur”

Um…so if you’re a priest you have symptoms of mental illness? If you choose to be celibate? Lots of people can make it through their lives without sexual activity. In other news, not feeling sexual attraction does not imply that you have to avoid sex. Unrelated! Crazy! Throwing these symptoms together is just illustrating a complete misunderstanding of what it’s like to be asexual.

“Lack of attraction to the opposite or same sex”

This is extremely sloppily written. What kind of attraction? What about non-binary people? Do friend urges count? If they don’t then we’re really looking at something far more akin to antisocial personality disorder. I think it’s implied that those are not the kinds of attraction that the author is thinking of but rather sexual attraction. What is wrong with not feeling sexual attraction if there’s nothing about it that hurts you or anyone else? It’s not like a lack of empathy that leads you to undertake cruel behaviors, it simply leads you to seek out different relationships for yourself. I’m really failing to see the problem.

At its heart this criterion says there’s one way to be human and that’s a sexual way, not because asexual people say they’re unhappy but because the author can’t imagine a different way. Why is this any less discriminatory than making it an illness to have a lack of attraction to the opposite sex?

“Complete lack of sexual thoughts”

My biggest problem with this is that I don’t think it exists unless you’ve got a hormonal imbalance, which is not related to mental illness but simple physical health. There are absolutely people that don’t feel sexual thoughts towards anyone or who rarely have sexual thoughts, but our bodies are filled with hormones that give us certain reactions and that doesn’t stop happening just because of your orientation. As an analogy, if a gay man is given a blowjob by a woman, oftentimes his body will react even if he doesn’t feel an attraction or particularly want the blowjob. It is possible to orgasm during rape. Our bodies react to things.

The other problem is that things like age can also play a role here. Hormones change with age, and some people’s testosterone and other happy sexy hormones just go down as they age. And then they stop thinking sexual things. It’s actually super normal and healthy. So why the compulsory sexuality?

“Touch aversion”

Ok so this is one of the criteria that I think has a little bit of merit in that there is a fair amount of research that shows that human contact is really good for your mental health. People who get hugs or hold hands or what have you tend to be happier. But there is also a lot of evidence that people simply exist on a spectrum of sensory sensitivity and for those who are extremely sensitive touch can be overwhelming. That’s a simple fact about the way their bodies process touch. Perhaps it has something to do with a medical condition (physical), but probably it’s just like different pain thresholds. We have them and for people with high pain thresholds it’s kind of a nuisance but you adapt.

I am one of those people who is fairly touch averse. I am not a hugging type person. I am not a kissing type person. I generally like my space. I cannot cuddle through the night (except with a cat). But that doesn’t mean that there aren’t times that I feel incredibly comforted by touch with someone I trust and care about. It doesn’t mean that I’m broken, just that I need touch in a different way. It really hasn’t been a big deal in a lot of my relationships except that I yell “STOP TICKLING ME!” fairly often when the other person is not intending to tickle me at all. People get their boundaries, move on.

“Inability to experience romantic relationships”

This is unrelated to sexual attraction. Sex and romance are not the same. Romantic relationships are possible without sex. Not feeling romance is also not a super big deal. Someone needs to read asexuality 101. I really have no more ways to say “it is possible to have a fulfilled and happy way full of great relationships without sex and romance”. These symptoms are basically saying “I prioritize romance so much that the only way I could imagine not having it is if I was crazy”.

“Social isolation”

Where did this come from?? Especially because later in the definition it specifies that you would be capable of holding down close personal relationships of a nonsexual or romantic nature, so it contradicts itself. Not dating is not the same as social isolation. Saying that it is is basically telling everyone there’s one way to have a family or be around other people and if you don’t do it that way you’re sick.

“Inability to become sexually aroused”

This is seriously not on par with nor related to a lack of sexual attraction. The symptoms that they give as evidence of “lack of sexual attraction” for the most part have nothing to do with sexual attraction. The ability to become aroused is 100% biological: does your body respond to certain stimuli. Attraction has to do with feelings towards someone. If you can’t become sexually aroused at all and you have a problem with it, it’s probably a question for your medical doctor not your psychologist. But of course none of these symptoms can be the result of something medical as per criterion b.

“It would manifest as something similar to schizoid PD, in which the individual is rather socially detached. However, unlike schizoid PD, this person would take enjoyment in other types of close relationships, such as with family or platonic friends. Additionally, they would not exhibit flattened affect, excepting in sexual situations. In this dimension, this individual does not possess the skills to understand or interpret social cues. A person may develop this due to either a predisposition to a schizotypal-like PD, lack or disregulation of hormones, or a lack of physical contact in childhood.”

So basically nothing would be wrong with this person except that they don’t want to have sex. Oh no! How horrible! Their life must be empty! The basic take home message is that if someone is not feeling a desire for sex then they must be unhappy or wrong. This is a pretty common feeling among a lot of people: if you’re not having or wanting sex, there must be something wrong with you and you should probably fix it. But simply having different desires, priorities, ways of relating, or ways of expressing intimacy doesn’t mean anything about your ability to live a good life. Throughout history psychology and medicine have turned difference into illness so that they have a legitimate way of trying to eradicate it. You’re a woman who likes sex a lot? Medicate. You’re gay? Stamp it out, it’s a disease. You’re a kinkster? Better see your doc.

Many of the symptoms presented above boil down to “you don’t feel the way that I’m used to people feeling”, or tie together something painful but unrelated with the different way of feeling. Many of them point at things that are often a sign of illness (lack of sex drive) and say that they are ALWAYS a sign of illness. Together, these allow a doctor to say that difference is actually a problem because it causes unhappiness. In reality the unhappiness is more likely caused by stigma and oppression.

So if you’re thinking about introducing a new medical definition let’s think about whether the symptoms are actually causing pain in someone’s life rather than just are something that doesn’t make sense to you, shall we?