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.

1. Does loneliness warp the mind?

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I’ve often experienced loneliness
as a toxin. A chemical that corrodes, gnaws through my bones a chasm, a gaping wound in the depths of my ribcage. This characteristic feeling alerts me to the river tide drawing me in, the cosmic forces of mania & depression.
It is a fundamental emptiness;
it destroys everything, it leaves nothing
& nobody untouched.

Mold creeps through a sheet of paper, drifts gently down like a leaf, thin & translucent.
When did I start feeling this way? It had to be — but what changed?
Risperdal & lithium was my lucky combo, wasn’t it? I almost thought I had outrun you, my friend. What do other people see when their eyes are laid to rest? Stay awhile.
Stay & consume me.
I’d rather die a star-crossed lover than a miserable fool. To long for sorrow is as natural as breathing.
Bad Thoughts reverberate in the canyon between my ears.
I imagine a room painted with red. It’s my bathroom — but I am not there now. This isn’t my couch.
A speck of dust floats by, idly drifting in an infinite universe–

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?

Akathisia: an inability to rest caused by antipsychotics

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Akathisia is a clinical term for extreme inner restlessness. People who are experiencing akathisia have great difficulty sitting still, or maybe even sitting at all. I first experienced akathisia on Abilify (which I ultimately discontinued because it gave me a facial dyskinesia), and it continued to plague me as I tried different antipsychotics, such as Haldol. I found myself unable to do anything except to go outside, pacing back and forth and smoking cigarettes. Propranolol offered me some relief from the worst of it, but the effect eventually faded.

The medications that are most likely to cause extrapyramidal side effects (EPS) — including tardive dyskinesia — are also the most likely suspects for akathisia. In fact, you might even say akathisia is a type of EPS, even though it does not cause per se involuntary movements. Common suspects would include Haldol and probably also Abilify, which has much greater risk of EPS than we once believed.

It’s excruciating to live with akathisia, and yet most people have never even heard the term. A common descriptor is the feeling of “wanting to crawl out of your skin”.

I’ve had some trouble over the years differentiating between akathisia and hyperactivity associated with my ADHD. The main difference between these two scenarios is the cause, but when you’re on a regimen of multiple antipsychotics plus lithium plus stimulants plus benzodiazepines it becomes difficult to discern cause and effect. No doubt in my mind, at its worst akathisia feels worse and even more frustrating than ADHD — but what about those days where it’s just kind of there?

I’ve also experienced restless leg syndrome. Some scholars believe there is a link between RLS and akathisia — essentially, that akathisia is like RLS experienced during the day (as well as at night — akathisia has kept me awake many nights). I would say this is a pretty apt comparison.

RLS and akathisia may be related.

When I first started propranolol, and was able to sit and rest for a few minutes for the first time in weeks. It was like getting your first pair of glasses, and realizing you can see clearly now. The relief was nearly immediate. Unfortunately, it faded somewhat over time. But I’ll remember that instant where it hit me, the moment I put on the glasses, forever. I hadn’t even realized how bad it was until then.

Pediatric-onset bipolar disorder

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Traditionally, it has been thought that bipolar disorder emerges most typically in the early to mid 20s of a person’s life. It has been known since the time of Emil Kraepelin (circa 1921), however, that children can be affected by this illness. While adolescent onset (mid-to-late teens) is now recognized as common and similar to the presentation of adult bipolar disorder, pediatric onset bipolar disorder remains the subject of debate, and its presentation is somewhat different than adult bipolar disorder.

Why do some children get bipolar disorder?

We do have some idea why some people get bipolar disorder as adults, and others get it much younger. The effect is known as genetic anticipation, which occurs when certain genes accumulate in later generations. We know that bipolar youth are highly likely to have members of their family belonging to previous generations (parents, grandparents, aunts, uncles) with bipolar disorder. When those genes add up over successive generations, and the person has a LOT of the polymorphisms that cause bipolar disorder, they tend to get it a) younger and b) more severely. This also helps to explain why pediatric onset bipolar tends to be a clinically severe manifestation.

While adolescent-onset bipolar is not uncommon, bipolar disorder in children under the age of 12 remains rare. Nonetheless, it is important to diagnose. Studies have found that for every year of untreated illness, a child is 10% less likely to experience a resolution of symptoms for 2 months or longer — yet, an average of 10 years passes between symptom onset and treatment.

There is often a long delay between onset of symptoms and treatment. For me, it was 8 years (possibly more).

How does pediatric-onset differ from adult bipolar disorder?

Pediatric onset bipolar is commonly characterized by very rapid cycling. This is an uncommon phenotype (what the disorder “looks like”) in adults, but the majority of children with bipolar disorder are rapid cyclers. Chronic irritability is also common and is part of the reason pediatric bipolar disorder is so controversial. An episodic pattern of moods — whether the manias are dysphoric or euphoric — is arguably the hallmark of bipolar disorder; chronic irritability doesn’t seem to fit the bill, and in children who do not experience depression, an alternative diagnosis may be more appropriate. Nonetheless, irritability is a common symptom even among those children who seem to clearly meet the criteria for bipolar disorder.

Rapid cycling is the rule rather than the exception in children.

What happens to children with bipolar disorder?

Barring tragedy, children with bipolar disorder grow up to be adults with bipolar disorder. They need to be maintained on medication for the rest of their lives, or they are prone to relapse, just like any bipolar patient.

In my anecdotal experience (my symptoms started before the age of 10) I still have rapid cycling and dysphoric mixed manias as an adult. I urge those who are doubtful that rapid cycling bipolar is “real” or that it is somehow less valid to consider that many adults with this phenotype first experienced bipolar symptoms as children.

Recommended reading about bipolar in children

If you want to learn more about bipolar disorder in kids, I recommend the book The Bipolar Child by Demitri Papolos. It is really informative and helped me to better understand myself, as someone who had pediatric onset. I sat down in a library and read it all within a couple of hours.

5 tips to living your best life with bipolar disorder

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I’m medication resistant, meaning that meds don’t fully stabilize my cycling. I’ll never be the person who can say “nobody even knows I am bipolar”. In fact, I have to disclose my bipolar disorder to most of the people I work with, due to how it impacts my working hours.

I’ve tried every atypical antipsychotic approved for use in psychiatric patients in the United States except for clozapine (although that has been on the table) plus two typical antipsychotics, three anticonvulsant mood stabilizers, and many other drugs including benzodiazepines, antidepressants, hypnotics, lithium, and so on. I’ve taken the tour.

Currently, this is my regimen: olanzapine, risperidone, lithium, diazepam, and amphetamine salts. I continue to experience symptoms, even with all of that on board. So how do I live and continue to work? The answer is not one-size-fits-all, but for me there are a few key components.

1. Consistent sleep times

I try to go to sleep at the same time every night, and wake up at the same time every morning. Of course it doesn’t always work out that way, but I try. I also make sure not to schedule any meetings that are too late at night, and not to stay out too far into the evening, as both of these things will keep me awake. Each person’s natural bedtime is different, so I can’t tell you what time is correct for you, but for me it’s usually between 10 PM and 12 AM (a fairly wide window, I know).

Sleep is super important in managing bipolar disorder.

2. Structure during the day

It helps me if I am able to maintain some regularity and consistency throughout my days. Since I’m an academic and my work schedule is flexible, this is something I largely have to impose on myself. When I’m really struggling I’ll schedule events in my Google Calendar, even for things I don’t “have” to do — recreational activities, like video games or watching anime. The point is to stay busy, but not too busy. Make sure to build in plenty of breaks. This also helps me get the things on my to-do list for work done efficiently.

I use Google Calendar for this.

3. Take meds religiously

This one doesn’t need a whole lot of explanation, but it’s an important point. Don’t stop taking your meds. At least for me, it always ends in hospitalization, and that’s a huge disruption to my life even though I’m quite used to it by now. Don’t get me wrong — sometimes hospitalization is necessary. However, it’s best to avoid it as much as possible, so that I can stay in contact with my friends and family.

Medication is the primary treatment for bipolar disorder, and it must be taken regularly.

4. Light and darkness

Research has shown that light/dark cycles have a dramatic impact on bipolar moods. I use a light box (or “sun lamp”) for a couple hours daily in the winter. You can buy a clinical strength sun lamp on Amazon (I am not affiliated, and do not gain anything from this) but be aware that the market is flooded with lamps that are not full clinical strength. The recommended protocol for bipolar disorder is to start at noon for 10 minutes, then add 10 minutes every day until you reach 1 hour. This is because the sun lamp does run some risk of triggering mania. At the same time, when you go to sleep (or ideally, when it’s naturally dark outside) there is an equivalent if not more important factor: darkness. Total darkness at night has been shown to dramatically stabilize patients who did not respond to conventional treatments.

Sun lamps can help with low mood and low energy.

5. Mindfulness and psychoeducation

The point of mindfulness in this context is to be able to recognize what mood state you’re in. Likewise, it helps me to be as educated as possible. I read tons of papers, but these are not super accessible to everyone; if you trust your psychiatrist, I recommend asking lots and lots of questions so that you can understand as much as possible. I also compiled a list of some of my favorite bipolar books. The insight into what you’re going through can save your life, even if it doesn’t change what you’re going through.

Keeping track of your mood takes time and practice, but it can be a huge advantage in managing bipolar disorder.

How does lithium work?

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Ah, lithium; it’s been our gold-standard treatment for bipolar disorder for many years, and can work for people who have failed other drug trials. It is also one of the only drugs known to decrease the risk of suicide1. But how does it work?

It’s a bit more complicated to understand than, for example, an SSRI (which, ultimately, increases serotonin in the synapse, through a fairly intelligible mechanism of stopping reuptake). Despite knowing since 1949 that lithium was an effective treatment for bipolar disorder, we still don’t fully understand its mechanism of action.

There are a lot of signalling pathways in the brain.

One of the difficulties in determining this is that lithium goes everywhere in your body. Within the brain, it can cause an absurd number of changes through numerous signalling pathways. Like other drugs, it can cross the brain-blood barrier (an important quality for psychiatric medications, since they target the brain) but, uniquely among psych meds, it can also enter your intracellular space — hiding inside your cells, instead of just floating around in your blood.

It is excreted by the kidneys in urine, although it is also known to be excreted in human sweat and tears2. (I’ve had hyper-salty tears caused by lithium every so often.)

Lithium appears to increase the concentration of some neurotransmitters (potentially serotonin and GABA) while moderating the effects of dopamine and norepinephrine through its effects on voltage-gated channels3. This action causes a broad cascade of effects throughout the entire brain that restores balance in people with bipolar disorder. Lithium can get into any cell in your body, and it goes inside your neurons (brain cells) too. This is how it affects voltage-gated channels and moderates the activity of all neurotransmitters.

Although we usually call it a mood stabilizer, it’s not related to any other drug we put in this class, since it is not an anticonvulsant. Lithium is probably most accurately classified as a neuroprotective drug4, like memantine (a drug typically used for Alzheimer’s disease). There is even some speculation that memantine could augment the effect of lithium, due to its similar mechanism of action, but specific to the NMDA receptors.

A key point to understanding the pharmacodynamics of lithium is that lithium, in the human body, can use the same transporters as sodium. It fits where sodium should go — therefore, it exits cells through active transport systems designed for sodium, but at about half the speed of sodium. The similarity of lithium and sodium explains why lithium is excreted by the kidneys and not metabolized by the liver.

a) lithium salts; b) sodium salts

This is also why activated charcoal will not absorb lithium. Your body sees it as a metallic salt (it has a positive charge), and metals (or charged ions) are not attracted to charcoal. In addition, the similarity of sodium and lithium creates a sort of sodium-lithium ecosystem in your body; if you maintain a steady dose of lithium but drastically reduce your intake of sodium, your lithium levels can rise to toxicity.

References

  1. Kessing, L. V., Søndergård, L., Kvist, K., & Andersen, P. K. (2005). Suicide risk in patients treated with lithium. Archives of General Psychiatry, 62(8), 860–866. https://doi.org/10.1001/archpsyc.62.8.860
  2. Fraunfelder, F. T., Fraunfelder, F. W., & Jefferson, J. W. (1992). The effects of lithium on the human visual system. Cutaneous and Ocular Toxicology, 11(2), 97–169. https://doi.org/10.3109/15569529209042704
  3. Lenox, Robert H., H. C.-G. (2000). Overview of the Mechanism of Action of Lithium in the Brain: Fifty-Year Update. 61.
  4. Gray, J. D., & Mcewen, B. S. (2013). Lithium’s role in neural plasticity and its implications for mood disorders. Acta Psychiatrica Scandinavica, 128(5), 347–361. https://doi.org/10.1111/acps.12139

Dirty Dyl (Art Therapy)

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Dirty Dyl (Art Therapy) by Elliot Gavin Keenan

Dirty Dyl (Art Therapy)

I.
Dirty Dyl, known for his ostentatious attitude
(typical of a manic persona)
wants to have a rap battle
in the middle
of the TV room.

Dirty Dyl, who lost
phone privileges on his first night
dialing 911:
I’m being held
hostage at South Oaks
Hospital, he said
& then screamed &
shouted & started to cry —

I ask him if poetry will do.

II.
I read my poem in art therapy.

Soon, three other patients are
scribbling in the small hospital-issue
composition notebooks
& the backs of napkins
in pencil, crayon, or markers
(the washable, non-toxic kind)
simply
because
it’s better than passing the time
weakly magnetized by television
game shows.

III.
I know Dirty Dyl,
or at least I know his face
from a gay hookup app.
He with his
crooked swagger &
snapback caps
is Not My Type.

Only I know
he is bisexual. Only I
know that he fucks
people like
me.

Somehow,
maybe
just in Dyl’s mind,
being the keeper of
this secret
inspires
trust.

IV.
Depressives squint at their words
with tired souls,
heavy hands & looks of
consternation. It’s not
beautiful, you know — it’s
bedhead & stubble &
hospital slippers with the little
treads on the bottom —
but as they write, they are
inspired,
their eyes grow bright,

they know of ink
on the page, the spark
of a fire in their
blood & they are increasingly,
if just a little bit,
alive.

V.
Dyl went home before I did.
I saw him the other day.
He got his job back at the dining hall,
where he once came to work on shrooms.
He smiled at
me & asked,
How’s poetry?

I smiled politely
back, thinking of
a line from Whitman

(I too am not
a bit tamed, I too
am untranslatable)

Happy World Bipolar Day!

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I am bipolar type 1. 🎭 That is the most severe form of bipolar disorder. (Bipolar 2 can have very severe depression, but because it doesn’t have severe mania it doesn’t progress along the same course. Something like that.) I’ve been inpatient 18 times, and I’ve been discharged from the ER a few additional times as well.

Interestingly, I don’t have what most people would think of if you said “classic bipolar disorder”. I have mostly dysphoric manias (and sometimes euphoric hypomania), so no grandiose delusions or belief that I can see the flow of energy that connects all things. Just bugs that… may or may not be real. 🐜 But, the dysphoric mania type is actually sliiiiiightly more common than euphoric (feel-good) mania in real-world bipolar 1 people, according to one study1. 

The main reason my bipolar is unusual is that it is so FAST. My psychiatrist describes it as “brittle” — a medical term often applied to highly unstable diabetes patients, where blood sugar skyrockets but then drops with intervention but then skyrockets again. It follows the same kind of course.

Blood sugar in brittle diabetes

Usually, I think my cycle (including both mania, which almost always comes first for me, and then depression — most bipolar people have one type of episode almost always come first, but it’s a 50/50 split which one2) is 2 to 4 weeks long. If it’s a lot faster than that it’s considered a mixed episode.

I rarely ever have euthymic (normal mood) periods and I don’t have any asymptomatic periods. (I have persistent problems with memory and executive functioning and other stuff.) 

💊 Currently every day I take: lithium, Thorazine (chlorpromazine), Zyprexa (olanzapine), Valium (diazepam), and Adderall (amphetamine salts). 💊

What causes bipolar disorder?

A lot of research links bipolar disorder to various things:
a) circadian instability, sleep problems ⏰
b) inflammatory processes in the brain 🔥
c) epilepsy 📈 — they have a lot in common, and medications used to treat epilepsy are often used to treat bipolar disorder; I think you can think of bipolar as being similar to some kind of epileptogenic brain activity but on a more macro scale. Similarities to Temporal Lobe Epilepsy include age of onset and genetic cause among other things and they do have a very very high comorbidity rate.
d) genetics 🧬 — 97% of bipolar disorder is explained by genetic variance alone and it is more heritable than autism or schizophrenia (I believe it might be the most heritable psychiatric disorder in DSM-5)

Most people get bipolar disorders in their 20s, but I got it early. I had suicidal depression sometime before the age of 10 and had my first clear hypomanic episode when I was 16. My parents were anti-psychiatry, so I wasn’t in treatment until I went to college and I almost became an emancipated minor because I was still 17 and it was that serious 🙃

Unlike autism, which is a fairly new concept (although autistic people have almost certainly existed for thousands of years) bipolar disorder is a very old idea for a distinct illness that occurs in all cultures that I know of. Other English names for it have been “manic depression” (a term I actually prefer), “manic-depressive psychosis”, “circular insanity” 🔁, all referring to a highly organized and unusually patterned occurrence of severe disturbances in mood.

That’s actually what I study now in my PhD program! I’m looking for patterns in bipolar disorder. I’m very good at patterns 🧩

References

1.  Grant BF, Stinson FS, Hasin DS, et al. Prevalence, correlates, and comorbidity of bipolar I disorder and axis I and II disorders: Results from the National Epidemiologic Survey on Alcohol and Related Conditions. J Clin Psychiatry. 2005;66(10):1205-1215. doi:10.4088/JCP.v66n1001

2. Koukopoulos A, Reginaldi D, Tondo L, Visioli C, Baldessarini RJ. Course sequences in bipolar disorder: Depressions preceding or following manias or hypomanias. J Affect Disord. 2013;151(1):105-110. doi:10.1016/j.jad.2013.05.059