If Autism Isn’t a Mental Illness, What Is?

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My name is Elliot. I’m an autistic psychologist with bipolar 1 disorder (and ADHD). I’ve been mentioned in passing [1] [2] in news articles about autistic autism researchers, but I prefer to keep on the science side of things. I usually only use Twitter for personal entertainment, sometimes biting my tongue as I weigh the pros and cons of engaging in autism discourse. I don’t entangle myself too deeply in advocacy work. For the most part, I keep my opinions on controversial things low-key no matter which side I am on. This post is a divergence from that tendency.

I have not uncommonly heard people object to classifying autism as a mental illness. It’s almost taken for granted that autism doesn’t fall under that umbrella. You may be surprised to know how people try to justify it if you actually ask them “Why isn’t it a mental illness?” Indeed, when pressed the most common responses are along the lines of:

  • “Autism is a neurodevelopmental disability” / “You’re born with autism”
  • “Autism isn’t an illness” / “Autism doesn’t need to be treated”
  • “Autistic people aren’t like *those* people”

The common element in all of these responses is a lack of understanding of what mental illness is and what mentally ill people experience. The question I want to ask back is this: If autism isn’t a mental illness, what is?

I’m not unsympathetic to the cause of not labeling people as having an “illness” because they’re neurodivergent, but why is it okay to do it to schizophrenic folks and not to autistic folks? There are plenty of mad people who don’t exactly view their diagnosis as an illness, although opinions in the psychiatric community are varied on this topic. Some consider diagnostic labels to be a prison, and others a gift. We sure live with plenty of labels.

Pharmaceutical drug labels.

Mental illness takes many forms. Some of them are quite properly classified as “neurodevelopmental disabilities” (including schizo spec, bipolar disorder, and ADHD — among possibly many others). The disorders I just mentioned are predominantly caused by genetics, and are therefore present at birth. The expression does change over time — but don’t autistic people have qualities that change as they grow and learn?

People refuse to acknowledge the close similarities between autism and schizophrenia (and other severe mental illness).

I’m going to flat-out recognize this: I think a lot of our community is biased. There are a lot of autistic people that are sanist, and they’ve been permitted to perpetuate misunderstanding.

My own therapist once tried to convince me after I admitted to experiencing delusions earlier in the week that I was merely referencing thoughts that were “overly rigid” as a result of my autism. My psychotic symptoms were being falsely attributed to my autism, and a lack of care was being given where care was needed.

And in the real world autistic people are at high risk of being mistaken for schizophrenic and taken to an ER for psych evaluation when they’re in distress. People can be treated horribly. But instead of stepping back and saying “Why do we treat mentally ill people horribly?” we’ve decided that allyship is not for us and we double down on “Autism isn’t a mental illness.” We cast non-autistic (and some autistic!) neurodivergent people as the Other.

To be quite honest, I think some autistic people are scared of crazy.

Perhaps they’re scared of people who may be erratic, hard to predict, or have dramatic emotional reactions.

A person wearing black Converse and a blue hoodie.

Are there reasons to set autism apart from conditions we consider “mental illness”? I just don’t see the justification for viewing autism as so singularly unique from other conditions. It’s possible that, in the future, we could redefine and do away with the label of “mental illness” altogether. I’ll be interested to see how language evolves for neurodivergent folks. I hope even moreso that people in the autistic community approach the psychiatric community with an open mind, and not with fear or prejudice. I see hope for a future of cross-disability solidarity.

Bipolar Disorder vs. Manic Depression

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If you’ve heard anything about the term “manic depression”, you might know that it is an older term for bipolar disorder. Here’s my unpopular opinion: “bipolar disorder” is a less accurate and more dehumanizing term than “manic depression”. 

Why? There are several reasons.

  1. The new name “bipolar disorder” was coined for the wrong reasons, and decided by the DSM committee without real input from people who live with the disorder. Officially, the reason was to reduce the stigma associated with inappropriate use of the existing term… but that clearly has not worked, because “bipolar” is now used in the same ways or worse. The real reasons for the change in terminology, despite little to no change in the diagnostic features associated with the disorder, were most likely generated by political division within the APA and not really out of concern for the people who live with it every day. At the time of the change, there was a vocal group of people with bipolar/manic depression that advocated for the original name, including Kay Redfield Jamison (author of An Unquiet Mind).
  2. As far as I know, bipolar people have seen little to no real-life benefit from the change. In fact, “bipolar” conjures a lot of misconceptions about what the condition really looks and feels like. Mania and depression are not really opposites — they feed into each other (by definition), and they can even occur simultaneously. People with bipolar/manic depression typically do not fly from one mood to another within minutes or hours, but “bipolar” seems to encourage that misconception while “manic depression” gives the idea that the disorder is a particular kind of depression, and doesn’t just come and go at the drop of a hat. Rather, much like non-bipolar depression, bipolar moods come in episodes that usually last for weeks to months. “Depression” is something people have more understanding of, even if “manic depression” is a different kind of it; “bipolar” sounds like something else altogether, and it sounds like something scary.

What do you think? Which term is more stigmatized? Is one term more accurate than the other?

Communication Styles in Neurodivergent People

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About two weeks ago, my cousin’s husband died from SUDEP (Sudden Unexpected Death in Epilepsy). He showed no signs of having experienced a seizure (no biting his tongue, for example); he simply went to bed one night and never woke up. He is bereaved by his daughter, who turned 7 years old a few days ago, and my cousin.

My cousin turned to me to talk about SUDEP. I warned her that while I knew this would be a difficult topic to discuss, I had a tendency to be very blunt about these things. But it turns out that’s exactly what she was looking for. She wanted to know the truth: Was there anything she could have done differently? And almost everyone on the planet would have told her no, because it’s the “right” answer. But she wasn’t looking for the “right” answer. She was looking for the “true” answer.

I explained that SUDEP doesn’t always follow a major seizure (it’s different than dying from status epilepticus). If the brain is like a computer, then a seizure is like a glitch, and SUDEP is like a system failure. Sometimes your screen glitches up and recovers. Sometimes it glitches and shuts down. But sometimes a broken computer just shuts down with no warning at all. In the latter case, there is nothing that could be done.

Neurodivergent people are often told that we need to be softer in our social approach — less honest, direct, blunt, or whatever you want to call it. But I’m a big believer in playing to our strengths. People with autism, ADHD, bipolar disorder, and other conditions have unique ways of communicating that have value. My cousin later told me that she understood my computer metaphor and it helped her, just a little bit, to begin the process of moving on with the rest of her life.

There’s nothing wrong with being a “blunt” communicator. Sometimes, that’s exactly what is needed. There are a lot of autistic people who won’t lie to you just to make you feel better, and that in itself is actually a virtue.

As for bipolar disorder, I think a lot of us have highly emotional communication styles. There are always going to be situations where this comes in handy, even if some people consider it a downside. People have always been open with me about their suicidal ideation or urges to self-harm because they knew I could take it and I would be there for them without freaking out or telling them they needed to go to the hospital if they didn’t really.

All neurodiverse people have their own styles of communicating, and they all come with benefits in the right situation. What do you think?

Rebranding psychiatry

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A lot of people with conditions that are defined in the DSM (Diagnostic and Statistical Manual of Mental Disorders) disagree with what their condition is called. In this post, I’m going to muse over changing the names of psychiatric disorders.

Manic Depression -> Bipolar Disorder -> Manic Depression

When the DSM-III was published, the DSM committee decided that the term “manic depression” had become overly stigmatized and abused. There was little to no change in the diagnostic features or description of the disorder (which has actually been fairly consistent for a very long time!), the only reason for changing the terminology was political. Many years later, I feel this has resulted in the term “bipolar” being just as stigmatized as “manic depression” ever was — except it’s even more abusable, since “bipolar” can be used as an adjective to describe many things, famously including the weather.

It should’ve been obvious that the stigma of manic depression didn’t originate from the term “manic depression” — and therefore not shocking that the same stigma followed, not the term that was used, but the people who live with the disorder. It was always the people, never the term. On top of that, I feel “manic depression” is more accurate as the term “bipolar disorder” doesn’t portray the common reality of mixed episodes and mixed mood presentation. “Bipolar” seems to imply a state of bistability, where two states representing opposite ends of one dimension (mania and depression) are cleanly and abruptly switched between; bipolar can be like this, but it is often messier.

Attention Deficit/Hyperactivity Disorder -> Executive Dysfunction Developmental Disorder

ADHD is a controversial term for some advocates and it’s understandable why. While attention and hyperactivity/impulsivity are characteristics that are used to diagnose the disorder, they’re downstream of the real difference experienced by people who live with the condition — which is developmental effects on executive functioning. Broadening the term to define it by its root cause would probably feel more accurate of the experience of living with the condition.

Inadvertently, if the diagnostic criteria were changed accordingly to reflect other developmental disorders of executive dysfunction, there may be groups of people who didn’t meet the criteria before who now do. This is something to be interested in, of course. Attention and hyperactivity/impulsivity could still be used as specifiers, and the developmental history aspects would probably still be required so that people with executive dysfunction of non-developmental origin aren’t accidentally included. Additionally, we know that autism is associated with some kinds of executive dysfunction and this change would probably blur the lines between them even more — but in reality, those lines are pretty blurry.

Autism Spectrum Disorder?

There is a lot of controversy over this one, and to be honest I don’t have all of the answers. I think “Asperger’s” was a term of limited utility because many studies could not find clear differences between “Asperger’s” and “High Functioning Autism” even though supposedly the Asperger’s group had no language delay and the HFA group did. Their outcomes, though, were the same. So it was decided that we would collapse autism into one diagnosis that represents a gradient or spectrum of features and levels of impact on the person’s life.

However, I actually agree with some advocates who say that this has proven obtrusive for people with high support needs as the common conception of autism drifts further and further from Rain Main to Sheldon Cooper. There are many people out there who no longer believe autism is a disability. I can’t fully reconcile myself with this stance when we’re talking about a nonverbal adult with an IQ of 40: this person’s life is much, much different than mine, and I genuinely want to help them in the most effective way I can. At this venture, I believe we need a term for people with high support needs. But, the options thus far have been problematic (for example, I do see the reasons why “high functioning” and “low functioning” are much too simplistic to capture meaningful differences).

In the end, the best I can come up with right now is to include Verbal IQ score as a specifier. It’s not perfect (we know IQ means something specific, and can’t be generalized to “intelligence”), but it’s one of the better indicators we reliably have of how disabled this person is, how many barriers they’re going to face to get treated fairly and with respect. And, it doesn’t create a competition where someone is more or less autistic than I am. We’re both autistic; it’s just that one of us has an IQ of 40 and that information isn’t trite. Despite the risks of increasing discrimination, I think we’ve seen with the bipolar fiasco that changing terms merely to avoid stigma (which is attached to people, not to terms) is not a good idea.

After a suicide attempt

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Caution: this post contains explicit discussion of suicide

Two days ago (on September 10th) was World Suicide Prevention Day. Although it is important to address prevention of suicide attempts, the strongest predictor of a fatal (or “completed”) suicide is a history of previous, non-fatal suicide attempts. The risk factors for suicide attempts are more diverse and include: family history of suicide, early onset of bipolar disorder, extent of depressive symptoms, increasing severity of affective [mood] episodes, the presence of mixed affective [mood] states, rapid cycling, comorbid Axis I disorders, and abuse of alcohol or drugs1

Most suicide prevention effort focuses on people who are naive to psychiatric treatment and have reached a crisis point: people who don’t already have a psychiatric point of contact, and usually people who have never been treated in an inpatient setting before. In my experience, most people do not continue using crisis lines or similar services after they have been hospitalized once. Surmounting the fear and stigma around hospitalization itself is a primary reason crisis lines exist. Crisis lines are staffed by severely underqualified volunteers, who are usually following a script, and only have two action moves: call an ambulance, or tell you to go talk to someone else (sometimes your health insurance company). Yet, people find calling a crisis hotline less formidable than simply admitting themselves voluntarily.

But what about those of us with chronic illnesses, with volumes of psychiatric history, who have been admitted many times? This service is clearly not meant for me. If I spoke to a crisis line on what to me is an an average day, I might find myself being dragged to the ER and with an $800 ambulance fee to boot. There is no exception for chronicity. The stakes of a mistake are high, and the crisis line operator is equipped with a high school diploma.

There’s a gap between services for first-episode patients and services for profoundly disabled people who live in an institutional setting. After my close-to-fatal suicide attempt about two and a half years ago, I had to navigate what exactly life looks like after a serious suicide attempt. I consumed an amount of lithium equal to the 50% lethal dose in rats, and an antidepressant that is also a potent anti-emetic (anti-vomiting) drug. I knew I would absorb more of the lithium if I delayed the onset of (inevitable) severe vomiting.

I was hospitalized for only 16 days. The attending physician treating me thought I should go to a residential treatment program, but I was supposed to be at an academic conference and I begged to be realized in time to go. The head of the clinic evaluated the situation and decided to release me. I was discharged within hours of my flight to Europe. After the conference, I was enrolled in a partial hospitalization day program. The official length of the program was 8 weeks; I was probably enrolled for 4 months. My psychiatrist met with me nearly every day.

We tried a lot of medications, but for quite some time I was not permitted to take lithium. This was unfortunate, because lithium is probably the single most effective drug I take. I have cycled through almost every atypical antipsychotic: Seroquel, Abilify, Vraylar, Zyprexa, Saphris, Geodon… I’m sure I’ve forgotten something, it’s more than I can keep track of. I tried Depakote and Lamictal. Nothing has the same effect as lithium. Ironically, lithium also has a specific anti-suicide effect.

I continued to be suicidal throughout and beyond the partial program. I am lucky that my psychiatrist works well with me.

Chronic suicidality is probably more common than people realize. It doesn’t appear in the media. It’s taboo. You fear to acknowledge it exists somewhere. When we talk about improving mental health services, let’s give a little more attention to the people for whom posting a status update with the s-word in it is reason to panic and report it to Facebook headquarters.

References

  1. Hawton, K., Sutton, L., Haw, C., Sinclair, J., & Harriss, L. (2005). Suicide and Attempted Suicide in Bipolar Disorder: A Systematic Review of Risk Factors. The Journal of Clinical Psychiatry, 66(6), 693–704. https://doi.org/10.4088/JCP.v66n0604

Psychiatric disorders and discrimination by medical professionals

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There is much that could be written about the damage done by bad psychiatrists, but this post will specifically focus on non-psychiatric medical professionals: doctors, nurses, everyone involved with it.

Once I presented to the ER with a large abscess from a skin infection, and in great pain. I told the triage nurse that I had this abscess, and showed it to her (it was not subtle). She proceeded to look through my chart and started asking me about my bipolar disorder. I told her what she asked, and of course we got to “Are you planning to hurt yourself?” and I said no, because I wasn’t, I just really needed my abscess to be drained by a doctor.

Naturally, then, she put me in psychiatry and had a psychiatrist come speak to me. I told the psychiatrist what I told the nurse and showed him the abscess. He was horrified by it, and said he’d call my psychiatrist. After he spoke to her, he moved me to the medical area and gave his psychiatric stamp of approval. Finally, a medical doctor arrived and drained my abscess.

In retrospect, is it a big problem? I think it is. What if my condition were even more time-sensitive? They wasted significant time getting me a psych eval when I was not presenting with any major psychiatric symptoms, I just happen to have a chronic mental illness that I will have in my chart forever. What if I was having a heart attack? Would I have to get a psych eval because I’m bipolar?

If you have a label like “bipolar disorder type 1” they will always look for a psychiatric cause for your symptoms, even when the evidence doesn’t suggest it’s psychiatric (like, the huge abscess). They assume you are professionally crazy and anything you say is cause for suspicion, instead of an honest report of symptoms. Putting patients presenting with tangible physical illness in the psych area just because they have a diagnosis, but are not presenting with symptoms, is discrimination.

Anxiety and mania

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Recently, The Mighty published an article about the differences between anxiety and hypomania. However, I wanted to complicate the discussion by bringing up something that breaks the juxtaposition of anxiety and mania: primarily anxious mania, which is most likely a mixed episode associated with bipolar type 1.

The author describes how her anxiety leaves her “immobilized”. This can actually happen in mania, too — but usually not in hypomania. Hypomania is often very productive. Full mania is no longer productive — it’s frantic, potentially confused, and may be characterized by manic stupor. Emil Kraepelin used this term to describe a flight of ideas and elevated mood (not necessarily happy, but revved-up) combined with psychomotor slowness or immobility. I’ve been in this state, and I experienced it subjectively as intense feelings of anxiety paralyzing my every move. This might also be referred to nowadays as catatonia, and something similar can occur in severe depressive states; however, the catatonia that coincides with mania is likely excited catatonia (characterized by purposeless movements rather than being completely still).

Hypomania isn’t rare, exotic, or exciting to me. It’s just part of my life, and I take advantage of it when it comes around — which it will, no matter what. But, to me, full mania is to be avoided. Anxiety is also a daily part of my life, but the anxiety and paranoia I experience during a manic episode is even more excruciating than it usually is. Juxtaposing them as discrete, separate states can only take you so far in understanding what mania is and how it affects people.

Theories about stimming

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Whatever you want to call them — stims, repetitive behaviors, stereotypies — the terms are more-or-less interchangeable, but it remains that they are of importance in how we think about autism. The repetitive behavior/restricted interests domain is essential to an autism diagnosis. Autistic people, when asked, mostly seem to believe this is an important part of autism. Strangely, very few people have undertaken empirical research to validate (or challenge) common ideas about the nature of stimming.

For those who don’t know: what is stimming? There’s actually some variation in what people consider stims, but I think most people would agree that it includes rhythmic, repetitive movements of the body such as rocking, hand flapping, and pacing. Many people include vocalizations such as grunting or whistling. Based on the conventional description of some autistic children having a fascination with parts of objects (like the wheels on a toy car), I feel manipulation of items such as fidget toys and spinners should be counted as well.

Wheee!

Of course, then we’re get into restricted interests territory. Restricted interests and repetitive behaviors are counted in the same “domain” in the DSM, along with sensory atypicalities. In my view, they blend into each other, forming a continuum — but more on that later.

If you asked me, I’d say there’s a lot we don’t know about this topic. A lot of people have beliefs, for sure, but there’s little to no real evidence. At least, not the kind of evidence you can cite.

Most of the knowledge that’s out there comes from the beliefs of autistic community members. Dr. Steven Kapp (who is, coincidentally, a friend) did a qualitative analysis of 31 autistic people’s opinions on stimming.1 Nobody said they disliked their stimming; most people said they found it calming. The study thusly found that stimming most likely serves a regulatory function, and identified three factors that autistic people said caused their stimming behavior: overwhelming environment/sensory overload, noisy thoughts, and uncontainable emotion.

It’s interesting to me that nobody in this study mentioned under-stimulation of sensory input.1 They seemed more to believe that stimulation in excess of a certain individual or situational threshold was the primary cause, and in this case the “stimulation” could be an internal stimuli (a thought or an emotion).

It’s such a simple theory that it seems baffling that nobody has really tested it. Why is that important? Well… sometimes, as humans, things aren’t what we expect them to be. I know a lot of people will react negatively to that sentiment, but I’m autistic too, so it really is an everyone thing. A lot of psychology (ex, cognitive psychology) is actually not self-evident, and may be counter-intuitive. For example, people are not particularly good at judging how they best learn. People overestimate the benefit of massed rehearsal (cramming for an exam) because they feel like it helps them remember more than spaced rehearsal (studying every night), even after seeing evidence that spaced rehearsal results in better task performance.2

Don’t get me wrong, metacognitive insight is valuable — it’s my own greatest weapon! — but it helps to have evidence to back it up. (Likewise, it helps to have qualitative information to back up empirical results.) So why don’t we have studies about this?

Massed practice is inferior to spaced practice, even though you think it’s not.

One study that has been done (although, again, not an empirical study) used Bayesian statistical principles to think about the mechanisms of cognition in autism.3 They concluded that autism features atypical accuracy of predictions — or, more precisely, that they did not use as much prior knowledge in their perception, leading to potentially more accurate perceptions of the world. However, this makes ambiguity and uncertainty very difficult to deal with. The authors use this framework to understand stimming as a means of reducing the uncertainty in the environment, and thereby reducing the sense of alarm or sensory overload experienced by that person.

As I mentioned, repetitive behaviors blend together with restricted interests. Something I’ve become interested in is the role of perseverative or repetitive thoughts and its relation to the role of repetitive behaviors. I explored this idea a little bit in my first paper,4 but I have yet to truly investigate my thoughts on the matter as much as I would like. Here’s my underlying theory: autistic children, as children, have both repetitive behaviors and repetitive thoughts. Normally, these two processes inhibit each other. This seems to corroborate well with the accounts of “noisy thoughts” being a precursor for stimming behaviors to control them.1 However, when children with normative verbal ability become older, they stop doing repetitive behaviors — leading to increased repetitive thoughts, which my study found could be a risk factor for developing depression.4 This might explain, at least in part, why rates of depression are highest in autistic adults with more normative verbal ability. And it lines up quite well with what the autistic people in Kapp’s study said: they identified others’ tolerance of their stims as a matter of acceptance vs. devaluation.1

Do you have any theories?

References

  1. Kapp, S. K., Steward, R., Crane, L., Elliott, D., Elphick, C., Pellicano, E., & Russell, G. (2019). ‘People should be allowed to do what they like’: Autistic adults’ views and experiences of stimming. Autism, 23(7), 1782–1792. https://doi.org/10.1177/1362361319829628
  2. Logan, J. M., Castel, A. D., Haber, S., & Viehman, E. J. (2012). Metacognition and the spacing effect: The role of repetition, feedback, and instruction on judgments of learning for massed and spaced rehearsal. Metacognition and Learning, 7(3), 175–195. https://doi.org/10.1007/s11409-012-9090-3
  3. Pellicano, E., & Burr, D. (2012). When the world becomes “too real”: A Bayesian explanation of autistic perception. Trends in Cognitive Sciences, 16(10), 504–510. https://doi.org/10.1016/j.tics.2012.08.009
  4. Keenan, E. G., Gotham, K., & Lerner, M. D. (2017). Hooked on a feeling: Repetitive cognition and internalizing symptomatology in relation to autism spectrum symptomatology. Autism, 2012, 136236131770960. https://doi.org/10.1177/1362361317709603

I’m lucky to have my bipolar disorder

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There are times that I’ve felt cursed by having ultra-rapid-cycling, somewhat-atypically-presenting bipolar 1 disorder. My mood episodes are short (sometimes as short as one day, although usually lasting a few days to a week) and they can be very intense. I also suffer from mixed episodes, which are agonizingly painful to experience, and at times I have had profound suicidality that has led to multiple suicide attempts — one of which left me in a coma for three days and nearly claimed my life. Doctors said I wasn’t going to make it. But I did.

During the worst of times I’ve wished to have “classic” bipolar disorder instead of my bipolar disorder. In truth, “classic” features may be relatively rare; but it conjures the idea of long, bleak depressions punctuated by shorter, but still somewhat long, grandiose and euphoric manias. Separate and distinct periods of each, usually lasting for months at a time, with bouts of clean euthymia (wellness) in between.

I haven’t really experienced prolonged euthymia, instead merely catching glimpses of it over the course of my continuous ups and downs. My manias are “dirty” and dysphoric, tainted with depressive themes. My hypomanias are very productive; but if my mood spikes too high, my thoughts become dark and gruesome. If I were to jump off a building, it would be to kill myself, not because I believed I could fly.

And I’m also a researcher. Without a doubt, my research in the area of bipolar disorder draws upon my insights as a bipolar person. If I had “classic” bipolar disorder, the research I have done (some of it relying theoretically upon data collection of my own personal changes in mood) would not have been possible. Because I’m an ultra-rapid-cycler, I was able to capture long-term patterns that might take many years to become evident in “classic” bipolar disorder. I believe the same patterns exist in both, but when moods last for months at a time, it is harder to see those patterns.

My ability to detect patterns has served me well in life (including in my professional career) and to some extent, my bipolar disorder trained me to do it. Predicting my own mood was not only possible, thanks to the accelerated timeframe, but essential to my ability to cope with them. Part of the devastation of mixed episodes came with the loss of my ability to predict with reasonable accuracy when moods would peak or change and in what direction. Even so, I learned new patterns and slowly became able to tell what a “mixed episode” felt like, and whether I was experiencing one. This was not something I could do at first.

Insight into the emotions, cognitions, and memory issues that come along with my bipolar disorder developed over time, starting at an early age (as I first developed symptoms around the age of 10). In turn, this level of insight has allowed me to hypothesize connections no other researcher has yet seen. I understand firsthand how bipolar disorder intersects with changes in thinking and memory.

I have the opportunity to discern cause and effect in relation to changes in my mood much more easily than someone with “classic” bipolar disorder, thanks to the immediacy of any reactions. Upon hearing from my psychiatrist that nitrates in beef jerky were causally linked to mania, I took note of my own reactions. I had known for quite some time that beef jerky had a stimulant-like effect on me, but I was surprised to learn it did not have this effect on everyone. (Too bad!) I experience this stimulant-like effect almost instantly, while I’m still eating. The temporal proximity of the cause and the effect makes them easier to distinguish.

My bipolar disorder is a blessing and a curse. I have struggled immensely to control it, but I wouldn’t trade it for “classic” bipolar disorder or no bipolar disorder at all. The knowledge and abilities I have gained as a result of my battle with bipolar disorder — my bipolar disorder, not someone else’s — have actually, truly been indispensable to my life and my career. Plus, that excessively productive hypomania is pretty good too.

What is the goal of psychiatric medication?

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The goal of medication isn’t to make everyone neurotypical. That would be boring as fuck. — Dr. Coats (my psychiatrist)

Different psychiatrists no doubt have different philosophies about the point of psychiatric medication, and different patients have their own goals for treatment which naturally vary. To some people, bipolar disorder is a gift to be tamed; to others, it’s a curse to be extinguished. Regardless of whether you choose to take medication for bipolar disorder or not, you surely have your reasons for doing so. Many of these reasons seem to hinge on what the perceived goal of treatment is.

Some goals are specific: for example, “I’d like to be able to go back to school and get my degree”. Some goals, on the other hand, are more vague: “I’d like to be well again”. What does it mean to be well? Certainly, it means different things to different people.

As my psychiatrist, Dr. Coats, has said, the goal of psychiatric medication isn’t to make everyone neurotypical. There are some psychiatrists who may believe that the optimal outcome for everyone looks like neurotypicality (the complete suppression of bipolar symptoms to look like a “normal” person), but for many people with bipolar disorder this isn’t one of their goals. Furthermore, for many people with bipolar disorder it simply won’t happen.

This tends to happen.

One study that followed 258 outpatients, all of whom were taking medication, for one year found that 63% had four or more mood episodes within the year.1 26% were ill for more than 3/4 of the year. It seemed that medication was more effective at controlling mania than depression, as participants spent 3 times more time in depressive states than in manic states. A wide variety of drugs were prescribed to participants in this study, including mood stabilizers, anticonvulsants, antidepressants, benzodiazepines, and thyroid medications. The average participant took 4 different medications. Despite this, only 11% of participants were virtually free of mood symptoms. 89% experienced symptoms to some degree.

The study identified many subgroups of bipolar participants, each with a distinct pattern of recurrence (or non-recurrence) of mood symptoms. For example, of the 26% who were ill for 3/4 of the year or more, there were several subgroups: A) ultra-rapid cyclers who were essentially ill for the entire year, B) those with predominant depressive episodes (but experienced mood cycling), C) those with predominant manic episodes, and D) those who had chronic persistent depression with very little cycling.

Based on which pattern is most accurate to describe a given individual, it would be appropriate to adjust one’s goals and expectations for treatment with medication. When I’m ill, I’m closest to pattern A. My goals include slowing down my cycling, reducing the severity of mood symptoms and suicidal thoughts, suppressing my impulsivity and anger, and sleeping regularly each night. For someone with pattern D, goals might look a bit different.

Me without medication

I think it’s helpful to identify specific goals. This helps you determine if you’ve made any progress towards what you want to achieve, even if you still experience symptoms. For many people, resuming a completely normal life with no symptoms of bipolar disorder may be a futile effort — or an unwanted outcome. Even in my most well periods I experience cyclothymic changes in mood and energy levels. My work style is somewhat erratic, and I might stay up for 2 or 3 days working on a paper until it’s finished, then be unproductive for a month or two. My goals aren’t to extinguish these features. I’m not trying to be neurotypical. I’m trying to protect my life and reduce suffering.

Because while bipolar disorder can come with tremendous gifts, it can also be the source of unbelievable pain and suffering. Only you can decide how to reconcile that in your own life. And if stifling mood episodes completely isn’t your goal, that’s okay. It’s possible that you can still harness the benefits of medication to reduce suffering. I recommend being honest about your goals to your treatment team. A good psychiatrist shouldn’t be forcing neurotypicality onto you. Being bipolar in itself isn’t a bad thing.

Bipolar people are cool!

References

  1. Post RM, Denicoff KD, Leverich GS, et al. Morbidity in 258 bipolar outpatients followed for 1 year with daily prospective ratings on the NIMH Life Chart Method. J Clin Psychiatry. 2003;64(6):680-690. doi:10.4088/JCP.v64n0610