Catatonia – More Than Just Freezing

My heart races as I freeze, my whole body flexed in an uncomfortable position. I cannot move or speak, and I am stuck staring ahead. This feels like sleep paralysis, but I’m awake?

It feels like I should be able to move. I command my legs and arms to move, but nothing happens. My brain is trying desperately to maintain this illusion of control.

Like sleep paralysis, I have the urge to scream, but nothing comes out. The more I fight, the worse I’m pulled into this sense of helplessness. It’s a waking nightmare.

I’m experiencing catatonia.

Over time, catatonia becomes another mental health symptom I greet with resigned familiarity.

At least 1 in 10 people with severe mental illness will experience catatonia at some point.

Despite this, information on catatonia is not widely available. I didn’t learn the name for my catatonia from any doctor or therapist. I had to actively search to find a name for what I was experiencing.

Who Experiences Catatonia?

Catatonia is a prominent feature in schizophrenia (up to 35% of people with schizophrenia). It is classified under psychotic disorders but “can occur in the context of several disorders, including neurodevelopmental, psychotic, bipolar, depressive disorders, and other medical conditions” (DSM-V, 2013).

Nearly one-third of people with bipolar have it, roughly 3-12% of autistic people have it (across multiple studies), one small sample found 87% of people with Tourette’s met the criteria, and in one sample of inpatients with catatonia, 57% had experienced childhood trauma (ACEs). Psycho-physiological symptoms, BPD, dissociative amnesia, and paranormal experiences may also be correlated with catatonia.

What is Catatonia?

While they are under the same definition in the DSM-V, catatonia is often split into two categories. There are two main types of catatonia, akinetic and excited.

Akinetic is the most common. It is characterized by at least three of the following symptoms:

• immobility
• mutism
• withdrawal
• refusal to eat
• staring
• echolalia
• echopraxia
• atypical inflexible postures (posturing)
• resistance to movement
• repetitive movements
• declining requests or not responding for no apparent reason (negativism)
• grimacing

Excited type may be characterized by any of the symptoms in akinetic type but is also characterized by agitated psychomotor behaviors, which may express as meaningless movements or vocalizations and may result in self-injury or aggression.

Considering the prevalence of catatonia in autism, there are significant implications with excited catatonia type. Self-harm and aggression may be expressions of catatonia in autistic people, which further raises ethical concerns for behavioral interventions if catatonia is not considered as a differential diagnosis.

In extreme cases, there may be malignant catatonia which can be lethal. This is generally descriptive of drastic physiological changes (like blood pressure and hyperthermia) in catatonic episodes or other complications like malnutrition from a prolonged inability to eat.

Catatonia exists on a continuum of severity ranging from minutes to weeks. Historically catatonia was only diagnosed if it was extreme, but now it is considered commonly associated with many mental and medical diagnoses.

Treatment for Catatonia

Treatment for catatonia typically uses electro-convulsive therapy (ECT) or benzodiazepines. In addition to these treatments, psychological therapy also seems to help some people with catatonia. Transcranial magnetic stimulation (TMS) is a potential treatment for catatonia, though the evidence is preliminary.

For less severe forms of catatonia, formal treatment may not be needed. Catatonia is not an extreme enough symptom for me to need treatment for it. Things that have helped me personally are grounding exercises and anxiety coping mechanisms, as anxiety from catatonia can often aggravate it.

If you experience catatonia, you are not alone. Since the condition is not well known and carries some stigma, it can feel very isolating. But it’s far more common than people realize.

Please let me know your experience with catatonia in the comments or reach out to me through the contact form.

Why I’m Moving Platforms – A Confession of A Burned Out Advocate

I never intended my Tik Tok to be a route for advocacy. It was a place where people related to my darkest parts for the first time. A place to share trauma that most people don’t want to hear.

I don’t regret that it launched my advocacy platform. I couldn’t have predicted a job I had taken to help other people, autistic children, would turn into such a traumatic and life-changing experience. My job as an ABA therapist was a relatively short blip in my life, and yet it made such a significant impact on who I discovered myself to be.

I suppose finding out you’re autistic from ABA, an industry that views your existence as inherently wrong is just about the worst way you can find out. The guilt I felt at leaving helpless children at the hands of people who saw them as manipulative, dysfunctional, and in need of saving was nearly unbearable. I started posting on Tik Tok about it as a means of gaining sanity. A touch of reality when I was being gaslit by my coworkers and boss. Being fired was just about the best thing the clinic could have done for me.

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Motivated By Spite

My goal was to reach 10K. That was the number my father had at the height of his relative “fame,” which he weaponized against me growing up. It was a spite-motivated goal and one I craved desperately to reach. But when I achieved it with a controversial video, I was wracked with anxiety I hadn’t felt since starting the account.

I had thousands of people telling me I was wrong, spewing the worst kind of hate towards me, and arguing with each other. I became obsessed with managing the comment section, refreshing the page repeatedly to see dozens of comments pouring in.

My victory was hollow. I had reached my goal, but what was the point? It marked a year-long project that devolved the second half a million people saw my video. I started noticing other activists’ efforts, posts of friends and mutuals that went viral. The comments were filled with all sorts of projections, removing nuance and accusing creators despite their content being less than a minute long.

While it isn’t just Tik Tok, it seems especially bad because of the level of audience that you can reach and the length of videos. Being seen by more people isn’t necessarily a good thing. I grew bitter as I got comments on my videos critiquing minutiae, putting words in my mouth, and insulting me. It made me realize my efforts required a much more nuanced approach than Tik Tok.

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Welcome to Life of Lieu

Advocacy is exhausting, even if it’s behind a keyboard. It’s a ton of emotional labor to explain the same things over and over to the same questions/arguments. I don’t pretend to have it harder than most activists. I haven’t reached a platform where I’ve experienced a fraction of some of the abuse I’ve seen. I am also not out in the field advocating in harsh conditions against cruel people. But, I’m still tired.

I created this blog because I need a place to flesh out my ideas. I can’t articulate what I need in only 150 characters. I hate talking on video. And writing has always been the way I communicate best.

This blog will be a mix of my thoughts/feelings/experiences on mental health topics I feel are essential to address. Like Tik Tok, I imagine it will take on a life of its own. Welcome to Life of Lieu.