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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Catching octopuses, or, my love-hate relationship with the DSM

When I was in my teens and early 20s, both during the period when I read the DSM like a Bible of self-knowledge and during the anti-psychiatric period where I rejected the DSM altogether, I took it for granted that the diagnostic categories in the DSM reflected actually distinct disorders. I know now that the correspondence is much more complicated.

Here’s a metaphor. A mental disorder is like an octopus. It has eight tentacles, wiggles around, squishes to get through tubes, and changes color. The diagnoses in the DSM are like little cardboard boxes. Now imagine that an octopus is falling through the air (don’t ask me why, it just is) and you’re trying to catch it in a relatively small cardboard box. As it falls, the octopus keeps changing shape and color, and when you finally catch it, three tentacles are sprawled over the edges of the box. Oh well, at least you got most of it, right? I mean, until it crawls out.

That’s basically what psychiatrists are doing when they diagnose: trying to catch an octopus in a box. The actual condition, this complex reality that starts in our brains and is intertwined, whether we like it or not, with our personalities and experiences and interpretations of the world, is too big and shifty and multi-tentacled to fit neatly into a box. Sometimes though, diagnosticians can catch most of it, treat accordingly, and it all makes sense for a while … until the octopus moves. Which it will eventually do, because it’s a living thing.

For those of you who have no idea what the hell I’m talking about, let me be more concrete.  It’s not uncommon for a diagnosis of major depressive disorder (MDD) to change to bipolar II when hypomania emerges among the recurring depressions; for bipolar II to change to bipolar I when the person has their first full manic episode; or even for bipolar I to change to schizoaffective disorder when hallucinations persist outside of manic and depressed episodes. I’ve personally observed these progressions in my own family. Was the initial diagnosis wrong? Not really; the symptoms changed, the presentation developed.

Furthermore, I know a lot of people (most notably myself!) who have outlying symptoms, symptoms that don’t quite fit the diagnosis that seems most appropriate for them. A good example of this is someone with a bipolar II diagnosis who’s had one full-blown manic episode in 50 years. Does that one episode make her bipolar I? The flavor of her disorder is definitely more depression/hypomania. The people I know who have schizoaffective disorder probably fit their diagnosis the best, but schizoaffective disorder is a controversial diagnosis that some psychiatrists want to get rid of, so that just kind of proves my point.

Lately I’ve come to believe that there’s a multidimensional spectrum of psychotic/affective disorders, similar to the (also very complex and multidimensional) autism spectrum.*** And where you are on the spectrum can shift over time, in more than one direction.

Refreshingly, I am not the only person to think this way. There’s even actual scientific evidence for it. The “Kraepelinian Dichotomy,” which made a hard distinction between mood disorders and schizophrenia, is being called into question. (I’ll post some links below for those who want to dig deeper but are too clinically depressed to google.) Let me just state here that in one study, 45% of patients with psychotic disorders did not fit a diagnosis of bipolar or schizophrenia, but had elements of both. That’s almost half.

Here’s a little graph to illustrate how I kind of envision the spectrum:

mood spectrum (2)

 

The Y axis is mood, ranging through shades of depression, hypomania and mania. The X axis is psychosis, ranging from no psychotic symptoms through fluctuating paranoid delusions to round-the-clock hallucinations with anosognosia. Then there’s the Z axis coming out towards you, a third dimension, for anxiety.

You will notice that I took a shocking liberty and put “negative symptoms” (of schizophrenia) on the mood axis, although schizophrenia is not supposed to have a mood component. Well, I may be wrong, but do a google search and you’ll find articles in medical journals trying to figure out what the difference is between negative symptoms and depression. There must be a difference, because the Kraepelinian Dichotomy says these are totally distinct disorders, right? And then you will find stupid answers being proposed such as that depression is different because depressed people feel “sad” and schizophrenic people don’t.

Sorry to break it to you but I don’t feel sad every time I’m depressed, nor is sadness required for a major depressive episode in the DSM. Often as not, I just feel sort of bored and disgusted with everything (anhedonia), and like I’m moving through molasses (psychomotor retardation). My body aches, my brain feels slow and stuffed with cotton, everything takes more physical and mental effort. My speech slows down and I have flattened affect. These are all considered mood symptoms in my case because I’m diagnosed with a mood disorder. However a schizophrenic person could have the same symptoms, and their anhedonia, psychomotor retardation and flat affect would not be considered mood related. So are they really inherently mood symptoms, or do they only look that way in a certain context? And what about psychosis – if I become psychotic during a depressive episode, does that mean psychosis is a mood symptom?

Anyway. Back to the graph.

Coordinates represent a point in time. A person might cycle between two or more sets of coordinates, or move steadily in one direction across the graph. Over the course of a lifetime, some people will have a dot here or there (an isolated episode of psychosis, for instance, or postpartum depression) while others of us will have a big old winding road-map of places our brains have been.

It’s OK to come up with official names (diagnoses) for the most common patterns on these road-maps, as long as we don’t let them limit and distort our perceptions of them. Diagnostic labels are useful mainly for medical professionals and researchers; understanding the particular dimensions and coordinates of one’s own condition is much more useful and empowering to those of us actually living with it.

 

Further reading:

With his book “Why am I still depressed?”, Dr. Phelps helped me begin to reconceptualize my own recurrent depression as a form of bipolarity. Since I have double depression (probably the reason I don’t experience clear hypomania very often), the chart on this page made a particular impression on me:  http://psycheducation.org/diagnosis/bipolar-diagnosis-spectrum-or-yesno/

I totally geeked out over this article. This is the source for the 45% statistic and the whole thing is just super interesting:  A dimensional approach to the psychosis spectrum between bipolar disorder and schizophrenia: The Schizo-Bipolar Scale

This scientific editorial concludes: “Moving to a spectrum concept (be it with categories or dimensions) with recognition of overlapping pathogenetic factors and varying expression (dependent upon both genetic risk and environmental exposure) would allow a confident and clear diagnosis to be offered (perhaps ‘psychosis-spectrum illness’ or ‘ mood–reality disorder’), with a clear explanation that some specific tests and a period of observation will help to clarify the likely course of illness and response to treatment. This would be greatly preferable to the current situation and the inevitable consequences of damage to the therapeutic alliance caused by diagnostic revisions.” If you agree with me that that quote was awesome, and are now meditating on the implications of a term like “mood-reality disorder” (but what is reality??? feeling philosophical now), you’ll enjoy the whole thing: The beginning of the end for the Kraepelinian dichotomy

***Random footnote: I’d like to see a graph with the same concept for the Autism Spectrum, with dimensions including social and sensory components and whatever else autistic people jointly decide is most important.

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.