Amitta Shaw, et al. Autistic Catatonia (also called Catatonic Breakdown)

Research into autistic catatonia is well-established; early work in the field had been published by the year 2000, and study of the topic has continued since. As recently as 2022, a major overview of the topic was published in the journal Nature--which, as many know, is one of the most prestigious scientific journals in the world, with a readership of three million unique readers per month. (The article is titled "Catatonia in autism and other neurodevelopmental disabilities: a state-of-the-art review.") As a result, it is easy to find descriptions of autistic catatonia online. 

Here are a few basic facts about autistic catatonia:

* Somewhere between 5% and 20% of autistic people are said to present with catatonic features at any given time.

* Autistic catatonia may apparently be triggered by stress or trauma, but its onset does not always have an obvious cause. 

* Autistic catatonia is often hard to recognize, even for clinicians, because its presentation is quite gradual; as a result it seems very different from the sudden-onset stupor that is more familiar and instantly recognizable as catatonia.

* Possible warning signs of the onset of autistic catatonia include a "marked and obvious deterioration" in movement, volition (will), level of activity, or speech; or a regression in self-care, practical skills and independence compared to previous levels. 

* All of the following are also indicators: marked reduction in speech or complete mutism; increased slowness; freezing during actions; increase in hesitations; difficulty in crossing thresholds and completing movements; increased reliance on physical or verbal prompts for functioning; reversal of day and night sleep patterns;

* Autistic catatonia obviously shares many features with autism itself, to the extent that the two can be very difficult to distinguish sometimes. The difference is often simply that autism is a congenital condition appears in early childhood, whereas the disorder of autistic catatonia is not congenital but can appear among autistic people at any time: "the symptoms in catatonia are typically new-onset ... or due to a considerable worsening of existing symptoms." In other words, a person experiencing autistic catatonia may describe themselves, or be described by others, as "more autistic." 

* Another way to spot catatonia, as distinct from autism itself, has to do with "a change in the type and pattern of premorbid functioning (Ghaziuddin, Quinlan, & Ghaziuddin, 2005)." In other words, "reliance on prompting may significantly increase while the ability to execute previously mastered tasks, such as dressing oneself or completing a meal within a reasonable amount of time, significantly decreases."

* Finally, autistic catatonia--especially in its more severe forms--is sometimes diagnosed by means of the “lorazepam challenge test”  (Dhossche, 2014; Sienaert, Dhossche, Vancampfort, De Hert, & Gazdag, 2014). "An individual suspected of having catatonia is administered one or two milligrams of lorazepam intravenously or intramuscularly. The test should be conducted when a diagnosis of catatonia is suspected (Sharma, Jena, Sharma, & Agrawal, 2014). A positive response to the test, which is rapid resolution of all catatonic symptoms, strongly supports a diagnosis of catatonia (Sienaert et al., 2014). Similarly, zolpidem, a non-benzodiazepine, is also used to diagnose and treat catatonia when there is a lack of response to lorazepam (Sienaert et al., 2014)." Lorazepam (common trade name Ativan) is often used to treat catatonia in a variety of forms. I can attest that, when I took Ativan late in the progression of my deterioration, it produced a sudden and surprising lucidity and a kind of return to self; it was very different from my experience of taking Ativan earlier in my life, when it had a sedative effect. 

It is worth bearing in mind that all of these warning signs, with the exception of the last, are merely the markers of mild or moderate catatonia. They do not trace the whole progress of catatonic deterioration, which can become quite severe. In other words, while the onset of autistic catatonia may be gradual, and while mild forms of catatonia do exist, it is not necessarily a "less severe" or less acute form of catatonia. A resource page at the Association for Science in Autism Treatment, written by Jan M. Downey (MA, CCC-SLP, TSHH) and Mary E. McDonald (PhD, BCBA, LBA) helpfully distinguishes among the mild, moderate, and severe forms of autistic catatonia. Most of the indicators in the list above below to Downey and McDonalds "mild" or "moderate" forms of autistic catatonia, which they describe as follows: 

Individuals with moderate autistic catatonia present with limited mobility and a decrease in speech-language and communication skills, self-help skills and activities of daily living. These individuals exhibit extreme slowness in the ability to initiate, continue, and complete a task. The autonomic system may or may not be affected to some degree. The mild form of autistic catatonia is similar to the moderate form, but presents as less severe and does not typically involve the autonomic system.

Troubling as these symptoms may be, autistic catatonia may develop into a yet more dangerous form. As Downey and McDonald note, 

In [the] most severe form [of autistic catatonia], the stability of the individual’s autonomic system is affected, potentially impacting heart rate, blood pressure, body temperature, digestion, metabolism (thus affecting body weight), urination and defecation (individuals become incontinent), breathing and swallowing. Total immobility is also a possibility, with reliance on others for all previously mastered self-help skills and activities of daily living. Individuals previously demonstrating some verbal skills may also become mute. The individual is at risk to lose a substantial amount of weight and experience dehydration due to decreased food and fluid intake. This severe presentation of catatonia-like deterioration in ASD necessitates hospitalization as the individual is at significant risk for serious medical morbidity and mortality (Shah & Wing, 2006).

In other words, because autistic catatonia often worsens progressively, signs of mild catatonic deterioration (loss of speech, loss of coordination, regression in independence, et al.) should be taken  seriously. Catatonic deterioration can be reversed most easily when it is caught early; on the other hand, if allowed to run its course, it can become severely debilitating and even life-threatening, and in these more advanced cases, it is also much more difficult to treat. 

Clinicians frequently note that catatonic deterioration is often made worse by the misdiagnosis or misunderstanding of clinicians and caretakers, who may mistake the symptoms of catatonia to be laziness or recalcitrance. As Maureen Bennie writes, at the Autism Awareness Centre ("Autism-Related Catatonia: Shut Downs, Mobility, and Speech Difficulties After Early Childhood"), "It is important to understand that the effects of movement are not under voluntary control. The person is not deliberately being manipulative, aggressive, stubborn, willful, obstructive, or lazy."

My goal in this post has been to outline some of the basic features of autistic catatonia, as they are currently understood by researchers. In my next post, I will aim to draw out some of the suggestive connections between mild/moderate catatonic deterioration and what autistic people frequently call "autistic burnout."