Neurodiversity’s gatekeepers

I read this yesterday, and I want to link it here because it’s so good and so important: Dr. Simon Baron-Cohen Does Not Understand the Neurodiversity Paradigm

Here’s a quote from the article:

“The Neurodiversity Paradigm says that all brains are good brains and no one is disordered or in need of a cure or treatments that work to the detriment of their personhood.” – Max Sparrow

I passionately agree with this interpretation of the neurodiversity paradigm. Unfortunately, Dr. Baron-Cohen is not the only one who espouses the view that if a condition affects one’s functioning beyond a certain point (defined by whom?), it is no longer a “difference” or part of the person’s identity, but a “disorder” to be cured by any means. I hope that the people who see it this way are in a minority, but I don’t know that they are.

Here’s another example of this type of thinking:

“Autism is a natural form of human neurodiversity. Labeling it as a “mental disorder” or a “disease” has no scientific basis, has no benefit for Autistic people or their families, and leads inevitably to stigmatization, shame, and marginalization. Blind people, Deaf people, and many other disabled people get the services and accommodations they need without being labeled as having mental disorders. We don’t have to call autism a disorder or a disease to acknowledge that Autistic people are disabled and can require accommodations. Stop worrying about the latest changes to the DSM’s diagnostic criteria, and just remove autism from the DSM entirely, just like homosexuality was rightly removed years ago.” – Nick Walker (emphasis added)

Ohhh, OK, I get it. Having autism is fine, because it’s not a mental disorder. Better take it out of the DSM so that the stigma from all those mentally disordered people doesn’t rub off on us! And if an autistic person has a comorbid mental illness, we’ll just stigmatize them for that, not for the autism.

To sum it up another way:

Blind = “Hey can you teach me to read Braille?”

Deaf = “I really admire your culture!”

Physically disabled = “Thanks for the curb cuts!”

Autism = “Natural form of human neurodiversity.”

Mentally ill = “AHHHHH HELP THERE’S A CRAZY PERSON SHARING A DIAGNOSTIC MANUAL WITH ME GET ME OUT OF HERE!!!!!!”

I think of people who think this way as Neurodiversity Snobs. They are the self-appointed gatekeepers of the neurodiversity movement. They stand at the gate, checking everyone’s credentials:

“Ah, I see you have a job and you’re married? Quirky but brilliant? Go right in.”

“Wait a minute, wait … this says you’re psychotic and frequently homeless? I’m sorry but you can’t go in. You make a bad impression and … you’re just not really our type.”

“Hi there. Looks like those accommodations in college really worked for you! Well, go in, they’re just serving the cocktails.”

“You’re intellectually disabled? Um … I’m not sure what happened but they shouldn’t have sent you here. That was a mistake. Yeah, just head over there to the Eugenics Division, they should help you out.”

Fuck that. Seriously, fuck it.

I reject any articulation of the neurodiversity paradigm that excludes certain people because they don’t have the “right kind” of neurodivergence.

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Sanesplaining

I got into an argument with a stranger the other day on a mutual friend’s Facebook page. It started as a debate over the role of mental illness in the Las Vegas shooting and very quickly became a discussion of whether I was qualified to have an opinion on the matter. My opponent, a white male psychology student, told me “You don’t understand mental health.”

Well, maybe that’s true. Maybe I don’t understand mental health. But I think I have a decent understanding of mental illness – primarily the depressive-bipolar-schizophrenic variety and PTSD – from having lived with it for most of my life and having lots of contact with people who live with it, treated and untreated. Of course I am always learning more and there is much that scientists don’t understand either; and my knowledge and understanding of things like substance abuse, personality disorders (including antisocial personality disorder), is more limited.

There is no evidence that Stephen Paddock was mentally ill or that “counseling” would have prevented what he did, had he been motivated to seek it out (certainly money was not a barrier for him). He carefully and deliberately planned the massacre over a long period of time in a way that somebody with the cognitive impairments often accompanying psychiatric illness would be unable to do. His preparations included modifying legally purchased rifles to function as automatic weapons and installing surveillance cameras outside his hotel room.

I hold the unpopular opinion that some people simply enjoy hurting others and are basically bad people. You can label that a mental illness if you want, but these people are often very clever, very manipulative, good at hiding at their crimes and appearing charming. They have no functional impairment or apparent distress due to their actions. Very sadly, I have some personal experience with this, too. What do we call these people? What do we call the child pornographers and the serial killers?

That’s the discussion we could have had – the psychology major and I. But the discussion we ended up having, centered on me and how ignorant I am. He picked at my use of words; he was passive-aggressive and condescending. As it happens, I have not been terribly stable lately, and I snapped.

No doubt, the strong and colorful language that I ended up using, completely discredited everything I’d said. But I was discredited in his mind long before then. Why? Probably because I’m female and not a psych student and I disagreed with him. Disclosing that I’m crazy (and using the word “crazy”) didn’t help my case.

What upset me, and left me in a fragile and agitated state for the rest of the day, was not that someone disagreed with me. I actually enjoy debate. It was the way he picked apart everything I said. It was the implicit sneer in his comments. I hate to think that this person may become a therapist. I hate to think that people will go to him for help and that he will impose his preconceived ideas on their realities, then pick at them and condescend to them when they object. We don’t need any more therapists like that. That’s the last thing we need.

Navigating the world with a brain that filters and connects things unpredictably, that turns on you at odd moments, is scary. Depending on how much insight we have into our condition, it can make for a lot of self-doubt and self-questioning. “Are my perceptions here correct? Is this real? Will I look back on this later and realize my thinking was totally distorted? Or am I right this time? I’ve turned out to be right before.” Having a couple of trusted individuals whom one can consult in these instances of doubt is very helpful. But this dependence on others to confirm or dispute our interpretations of our own experiences makes us very susceptible to gaslighting, and to what I’m going to call sanesplaining.

Sanesplaining is when someone who does NOT have a major psychiatric condition themselves, tells someone who does what their condition is “really” like, what they experience or should experience, how they feel or should feel. It also involves discrediting and disputing the person’s thoughts and opinions. I’m going to use an example here from one of my favorite movies, Benny and Joon.

Joon is a highly intelligent young woman with an unspecified mental illness (mostly resembling schizophrenia). She is cared for by her older brother Benny. After Benny finds out that Joon has begun a sexual relationship with their roommate, Sam (who’s also neurodivergent, with a learning disability and some autistic traits), Benny goes into a rage and throws Sam out of the house. At this point, Joon tells Benny, with strong feeling and conviction, “I love him!”

“Yeah?” says Benny. “Well you are crazy.”

There you have it. Sanesplaining in a nutshell.

Our feelings and thoughts are constantly in question. It’s not always that overt. It might be a family member asking “Did you take your meds?” when we’re trying to explain why we’re upset about something they’ve done. It might be a psychiatrist saying “No, that’s not a side effect of this medication”. (Hint: if your psychiatrist says this, FIND A NEW ONE.) Or it might be some douchey psychology major on the internet, saying “You used a clinically imprecise term, therefore your opinion is worthless. Your lived experience doesn’t matter.”

Sorry, being a cruel and hateful person doesn’t make you mentally ill.

Trigger warning: saneism and hate crimes. Also I use the f-word.

There’s a sentiment that I see and hear a lot, often expressed by liberals who have an unjustifiably optimistic view of humanity, that offends me more than any number of slurs against people with mental disorders. This is the idea that “anyone who could do something like that to another person must be mentally ill.”

“Something like that” could be any number of things. Killing someone. Torturing someone. Being racist or fascist. Today’s example (which actually happened several years ago but just came back into the news because a judge in Florida decided it wasn’t actually a crime) is several prison guards locking a black man with schizophrenia in the shower and running near-boiling water on him for hours until he died. I’m not going to provide a link to any of the articles because it’s that disturbing; Google if you want the grisly details.

So I came across this story last night, and because apparently it wasn’t upsetting enough to read about another hate crime against a mentally ill person being dismissed as not worthy of prosecution, I read the comments. And of course there was that person (there’s always at least one) saying, “Who really has the mental illness in this situation?”

To which I respond, THE PERSON WITH FUCKING SCHIZOPHRENIA.

Let’s get something straight. Mental illness is an actual thing. There are specific symptoms that lead to specific diagnoses. There are detectable brain differences that can be studied. Genetics play a role – often a very significant role.

You don’t just get to decide that anyone who displays behavior you don’t like or don’t understand has a psychiatric condition, any more than you get to decide that anyone who takes a long time in a public bathroom has a colostomy bag. I mean they could, but unless you have actual concrete evidence of that, you probably shouldn’t assume it or assert it as a fact to other people.

This includes, by the way, Antisocial Personality Disorder. Many people are in the habit of casually diagnosing everyone with despicable behavior, or anyone who’s an asshole, as having APD (or “psychopathy” as they’re often not educated enough on the matter to know the current diagnostic term). Nope, sorry. Unless someone has actually been diagnosed with APD by a professional, you don’t get to decide that they have it just because you don’t like or understand their behavior.

The assumption that people are fundamentally good and thus all cruelty must be caused by a psychiatric condition is 1) delusional (though not in a technical diagnostic sense) and 2) saneist. It perpetuates stereotypes about mentally ill people being violent horrible human beings while letting all sane people off the hook for their behavior – even when they commit a hate crime against a person with a diagnosed mental illness. It makes “mental illness” itself a slur.

In reality, there are many cruel and hateful tendencies in human nature. These tendencies are not the same as mental illness. Many people with bipolar disorder, schizophrenia, and the like are very gentle and empathic people. I speak from experience, of which I have plenty because I know a lot of people with these conditions and I am one. While we may have violent outbursts when symptomatic, it’s the exception rather than the rule. It’s not who we are in our day to day lives.

Conversely, there are many people who do NOT have a psychiatric condition, who are bullies in their day to day lives, who are selfish, who like to hurt others or at least aren’t very bothered by it, and who are very susceptible to peer pressure. Did every person who participated in slavery or the Holocaust have an undiagnosed psychiatric condition? Or for that matter, every person in middle school who threw rocks at me or jeered?

I volunteered at downtown shelters. Homeless people with schizophrenia aren’t the ones jumping people, they’re the ones getting jumped. Or boiled to death in showers. It’s usually the person with the mental illness who is bullied and hurt by the normal folks.

But people with psychiatric conditions can also be assholes. We can also be mean, and selfish, and petty, and cruel. Usually this is NOT because of our mental illness. Usually it’s because WE’RE FUCKING HUMAN. Yes, all the nasty stuff you normals do, we crazies can do too. But it’s not because we’re different from you. It’s because we’re the same as you.

Accept it.

Saneism and gun control

Possible triggers: This post discusses gun violence, psychosis, and stigma/slurs against people with psychiatric conditions.

If you’re trying to keep up with the sewage that’s been spraying out of the white house lately, you might have heard that House Republicans repealed legislation that prohibits some people with some kind of mental disorders from owning guns.

I am not sure of the details of this law, mainly because I was too upset by the tenor of the articles about it to read them very thoroughly. Thus I have no particular opinion on this law or its repeal. (My thoughts on gun control are complicated; I believe guns need to be better regulated, but that the regulating should be done by a non-government body accountable to local communities. Having the government solely responsible for regulating guns might be fine until your government becomes a totalitarian entity and then it should be somewhat obvious why that’s a bad idea.)

What I do have an opinion about is the comments I read on these articles. Mind you, these were on “liberal/progressive” web pages, not Breitbart. The comments included such slurs as “mental case,” “nut case,” “mental idiots,” “deranged,” and “homicidal psychopaths,” casually thrown about with absolutely no recognition that these terms were referring to actual human beings with diverse personalities and rights and feelings. They insinuated that all people with mental illnesses of any kind are incompetent to have guns, and that all Republican lawmakers are mentally ill. Because, you know, all people with mental disorders are potential criminals, and being a greedy jerk who lacks empathy can only be explained by mental illness.

Then there are the comments on the recent mosque shooting, claiming that Alexandre Bissonette is mentally ill. This of course happens every time a mass shooting is committed by a white person. I have already seen specific claims that he must have been psychotic. As far as I know, he has no psychiatric history or diagnosis. The only justification for claiming he is mentally ill is that he is a white American male (i.e. someone the commenters identify with) who did something with motivations they don’t understand. I’ve actually seen the claim made – many times – that anyone who shoots another person must be mentally ill.

OK. A few facts. (I will not post links to my sources because they include disturbing details that might trigger some readers, but my sources are all from PubMed and you should be able to find them easily with a search.)

– An estimated 5-10% of gun violence and homicides are committed by people with schizophrenia, bipolar disorder, or psychotic depression. Put another way, 90-95% of gun violence and homicides are committed by people who are not pyschotic – i.e. by sane people.

– Of violence commited by people with these conditions, the vast majority are committed against relatives and friends. (Not strangers in public places.) Usually, the person who is psychotic believes that they are either acting in self-defense or are helping/saving/protecting the victim.

– People with these conditions are MUCH more likely to commit suicide than homicide.

– People with these conditions are MUCH more likely to be victimized by sane people or shot by the police than to commit violence against others.

If somebody does not have a diagnosed psychiatric condition such as schizophrenia, then DO NOT make that claim. DO NOT even speculate about it. It confuses people, and it contributes to stigma against the vast majority of people with schizophrenia, bipolar disorder, and psychotic depression who are far more likely to be victims of violence, or to use violence against themselves, than to inflict it on others.

Antipsychiatry stigmatizes people like me

Psychiatry has a long way to go. With or without good intentions, there have been some inhumane treatments and serious abuses committed throughout the history of psychiatry. There is a lack of choice, and financial injustice in our current mental health system. Therapeutic methods have improved since Freud (although it can still be quite the challenge to find a good therapist, much less one who takes insurance) but psychiatric drugs are in their infancy. There needs to be more research, more neuroimaging etc. Constructive criticism of psychiatry, wanting the field to evolve and improve, is not what I mean by antipsychiatry.

So what do I mean?

My definition of antipsychiatry is an ideology which makes the following claims:

1) No psychiatric conditions have any biological or physiological basis.

2) Psychiatric labels are merely a way to pathologize normal variations of human thought and experience.

3) Psychiatric patients must leave the system of psychiatric treatment in order to “recover” from their condition.

Many anti-psychiatric believers are former psychiatric patients who claim that they have recovered, often with some form of special diet or spirituality. They feel that they were wrongly plastered with psychiatric labels, stigmatized and given harmful treatments. I felt somewhat like this at one point in my life, so I’m sympathetic.

But, while I can’t argue with their personal experience (including the possibility that they were misdiagnosed and inappropriately treated, which happens), I believe the ideology they have adopted as a way to make sense of that experience actually contributes to stigma against people like myself, who accept the labels we’ve been given and continue to make use of psychiatric treatment despite its shortcomings.

First, I’ll try to explain why I disagree with each of anti-psychiatry’s claims.

1) It’s true that there’s a lot we don’t know about the brain, that psychopharmacology is largely experimental at this point, placebo effect is a tricky factor, and many psych meds are actually medicines for other conditions (e.g. lamotrigine, an anticonvulsant used to treat bipolar disorder), their psychiatric effects having been discovered accidentally. Finding a medication that works for an individual is a process of trial and error that may involve unpleasant side effects and worsened symptoms along the way. Side effects can be serious, even life-threatening.

But all this is true of other areas of modern medicine as well. For instance, when I was in preterm labor I was given shots of terbutaline – an asthma medication that happens to be used off-label for preterm labor. How is this any different from lamotrigine being used as a mood stabilizer? My son tried three different reflux medicines before we found one that was effective and did not have unacceptable side effects. Yet no one is using this to argue that gastroesophageal reflux is not a real, biological disease. Why then do people take seriously the anti-psychiatric claim that trial and error with psych meds proves our conditions have no physiological basis?

Furthermore, why are the side effects of these medications considered acceptable when treating seizures but not bipolar disorder or schizophrenia? Isn’t it because people more readily acknowledge the reality and seriousness of seizures than of mental disorders? But these disorders can also be matters of life and death. (I’ll note here that people go on special diets for seizures just as they do for depression, sometimes with positive results. The lines between so-called mental and neurological conditions are much finer than anti-psychiatry acknowledges.)

Believers in anti-psychiatry often say that these drugs are overprescribed. I do believe that some drugs, like antidepressants, are overprescribed, but that’s largely because they are handed out like candy by primary care providers. I’ve experienced that firsthand (being prescribed an antidepressant by an OB who hadn’t done much of anything to gather my psychiatric history and refused to follow-up or adjust my dose) and I also have friends whose PCP prescribed antidepressants when what they really needed was therapy. The fact that people who don’t have a physiological mood disorder are being prescribed antidepressants by doctors who aren’t psychiatrists does not mean that no one has a physiological mood disorder.

2) Sure, schizophrenia is a normal variation of human thought and experience. So is having a brain tumor. I’ve volunteered at downtown homeless shelters and talked to plenty of people with untreated schizophrenia. I have a relative living with untreated psychosis. I also know people who are being treated for various forms of psychosis, with varying degrees of success. Schizophrenia is a real and serious condition and antipsychotic meds can help in pretty amazing ways. There are always resistant cases.

There are some interesting studies suggesting that long-term recovery rates for schizophrenia are better in some traditional cultures (eg. in Africa) where they don’t have these drugs and their understanding of the disease is different. Anti-psychiatry believers point to these studies to prove that psychiatry prevents recovery. However, I think it’s a stretch to say that people who believe their relative is temporarily possessed by evil spirits are treating schizophrenia as a “normal variation” whereas those of us who believe it has biochemical origins are “pathologizing” it.

I do agree that there is a danger of pathologizing every experience that doesn’t fit within our culture’s ideology, and that we have a tendency to do this. Giving an antidepressant to a teenager who’s depressed because her parents are getting divorced is one example. That’s an inappropriate use of psych meds. I don’t accept that I am “sick” because of the mood symptoms I deal with on a daily basis. That’s just my brain.

But when I’m having an acute and severe depressive episode, I’m every bit as sick as if I had the flu. If that’s pathologizing my condition, then so be it.

3) If you’ve recovered from your condition without psychiatric treatment, great. John Nash is one high profile person who reportedly did so. Different people define recovery differently. For some, it means having no symptoms; for others, it simply means living and functioning with your symptoms and accepting yourself as you are. I guess I could consider myself in recovery by that second definition, but it’s a temporary state of recovery because I know that at some point in the future I could wind up on a psych ward.

And that’s the thing: my condition is cyclical. When I was in college, I thought I’d recovered. Then lo and behold, I got depressed again. Exercise and eating right didn’t prevent it, nor did my meditation practice or my relatively newfound faith. So rather than clinging to the belief that I was recovered, I once again sought professional help. Therapy helped for a while, and then – while still in therapy and doing all those other good things – I got depressed again, quite badly.

I am grateful to psychiatry. Thanks to psychiatry, I survived my teenage years without permanent scarring or organ damage. Thanks to psychiatry, I was able to take care of my medically complex newborn when I became a mother. Psychologists and psychiatrists have been there for me during acute crises (and no, they didn’t charge me for needing them after hours). These are all serious and important things. Not everyone needs psychiatric treatment as part of their ongoing recovery; but I do.

And this is why anti-psychiatry stigmatizes people. It makes the claim that no one needs psychiatry – but what this really amounts to is a claim that no one should need it. It plays into the American notion that we have total control of our mental state, that mental disorders are the result of a weak character or need for attention. By implication, people who still utilize psychiatric treatment are stupid, deluded, misinformed; or they’re sheep who mindlessly do whatever they’re told; or they’re victims of the system who should be pitied and/or rescued. These ideas are more demeaning than anything a therapist or psychiatrist has said to me.

Just as there are bad psychiatrists out there, there are surgeons and gastroenterologists who are jerks (trust me, I’ve met them), who make their patients feel demeaned or who are incompetent in their fields, but this doesn’t prove that modern medicine is all a farce. Some people believe it’s a farce, usually based on one or two bad experiences with doctors; when I encounter such people, I generally find that they have a negative attitude towards my son’s medical team and our treatment choices. It’s hard to judge an entire field and all its practitioners without also judging the people who are benefiting from that field.

Anti-psychiatry believers complain about the stigma attached to diagnostic labels. I can’t help the feeling that at least some of these former psychiatric patients have chosen this ideology as a way to make a radical separation between themselves and the “psychiatrized” population. Psychiatric labels no longer apply to them, so neither does the associated stigma. They no longer take medications, so they don’t have to deal with the stigma of that, either. People who survive cancer don’t generally go on a campaign against oncologists and cancer treatments (although the treatments are brutal enough) or object that their cancer was pathologized. Is that because cancer is more “real” than mental disorders, or because it’s less stigmatized? Is it possible that anti-psychiatry among former patients is driven by internalized saneism?

For the rest of us, who accept our diagnoses – at least as approximations of an underlying reality – and find meds helpful, the stigma is still there.

Psychiatric conditions need to be normalized, but not by denying their reality or attacking treatments that help people, that literally save lives. That is the opposite of helpful.

Internalizing stigma

I used to be much more open about having a psychiatric condition.

My mother has been on medication for as long as I can remember. Her psychiatrist was a household name throughout my childhood and adolescence. (Whether we viewed her as a benevolent or malevolent figure, the psychiatrist was there, like a relative one alternately loves and hates.) My father also went through a couple episodes of major depression and briefly took an antidepressant. They both talked openly about these things. So when I had my breakdown at 15, I did not have any sense that seeing a therapist and taking medication was something to be ashamed of.

I quickly learned differently. Even some of my friends, a group of misfits with problems of their own, reacted negatively. I also learned that some people in my own family, outside the immediate circle of my sister and parents, were not understanding.

One incident particularly sticks in my mind. I remarked to my favorite teacher that I was going to ask my therapist something, and I will never forget the look of shock that came over his face. Why it was so shocking to him, I still don’t understand. But I immediately internalized that look. I was duly ashamed of myself. How could I have been so stupid? How could I have thought that was OK to talk about? Why did I have so little understanding of social norms?

That was the day I learned not to mention psychotherapy unless the person I was talking to confessed to it first. Even if I learned that a friend was seeing someone, I was careful about how much I told them. I learned that an occasional generic depressive episode was more acceptable than long-standing mood instability. I learned not to talk about intergenerational trauma or self-injury or delusions. I went to college. I got a job. I developed better impulse control in public. I learned how to appear to others as a normal, sane, functioning individual (which is different from actually being a normal, sane, functioning individual). And every time I messed up, every time I let something slip, I internalized the other person’s reaction: the awkward silence, the shock, the condescension.

But then something interesting happened. My son was born, and I discovered that when I mentioned his birth defect to people, they reacted exactly the same way. Even though it was a purely physical condition they could see for themselves, my speaking openly about it made them uncomfortable. They scowled. They fell silent. They looked away.

I now understand, after years of surging self-hatred every time I recalled the high-school incident, that my teacher’s reaction was formed by social prejudice and that I had no reason to be ashamed. I understand this intellectually, and yet I feel uncomfortable writing about it even on an anonymous blog. The social process that tells us what is acceptable and what’s not, that pushes madness and sickness and just plain difference underground, that makes so many people unwilling to seek help, is very effective. Emotionally, I haven’t overcome that internalized stigma.