Beyond Apraxia: Catatonia

Thanks to the increasing presence of neurodivergent self-advocates and their willingness to share their lived experiences, understanding of the complexities of movement differences continues to grow.

1. Apraxia, or the difficulty with executing volitional movement, is not only more understood, there is now a general body of knowledge amongst nonspeakers, families, support providers, practitioners, and allies, with regard to supporting an uncooperative body.
2. Motor or body coaching is a go-to strategy for supporting the mind’s ability to reconnect, so to speak, with the body so that an individual can physically follow through with their intentions.
3. However, there are those whose motor planning is impacted on an entirely different level due to factors that are not as well understood.

Catatonia
According to the general medical and scientific literature, catatonia is a complex neuro-psychological disorder that refers to a cluster of abnormalities in movement, volition, speech, and behavior(4). Catatonia has a long and complicated history within psychiatric literature. Throughout the late 19th and much of the 20th century, it was associated primarily with schizophrenia and other mood disorders(5).  Not surprisingly, the Diagnostic Statistical Manual of Mental Disorders (DSM) reflected what was generally understood at the time and, in its first four editions, referred to catatonia as a form of schizophrenia. The current edition of the DSM-V now lists catatonia on its own. Catatonia can be difficult to recognize, especially in the early stages, because it can occur either on its own or with other medical and mental health conditions(6). In 2000, Dr. Lorna Wing and Dr. Amitta Shah first brought attention to catatonia and autism in their paper titled, Catatonia in Autism Spectrum Disorders(7). According to their paper, of particular note is that most of the DSM’s features of catatonia overlapped with characteristics associated with autism. In her 2019 book, Catatonia, Shutdown, and Breakdown in Autism, Dr. Amitta Shah cites this overlap as one of the main reasons “clinicians will not recognize and diagnose the most commonly seen manifestation of catatonia in autism which is a gradual deterioration/breakdown in functioning and difficulty with voluntary movements”(8). The prevalence of catatonia and autism varies, but the most commonly cited statistic is between 12-18% with varying levels of catatonia however, the prevalence is likely to be higher”(9).  

Manifestations of Catatonia: catatonia-like deterioration Dr. Shah highlighted the gradual onset of chronic catatonia and the fact that it was a deterioration in ways that affected autism. She further defined the underlying features and manifestations into three categories:(10) 

• Primary difficulties and manifestations 
• Secondary difficulties and autism breakdown 
• Consequences for the individual and their families 

*Given the current understanding of apraxia and to ease identification and understanding of this complex movement phenomenon, key features from Dr. Shah’s original categories are presented below. 

*At the time of the publication of Shah’s book (2019), there were no specific rating scales available for the assessment of autism-related catatonia. Questionnaires have been developed, but Dr. Shah has developed an assessment schedule called the Autism Catatonia Evaluation (ACE-S.)

Causal Factors
According to Shah, detailed psychological assessments and formulations of individuals that she and Dr. Wing treated highlighted the fact that two main types of factors seem to be responsible: 

• Psychological distress, anxiety, autistic stress, and non-coping. 

*can include trauma and the lack of access to reliable means to communicate. 

• Side effects of psychiatric medication (11)

Intervention and Management Approaches

Psycho-ecological Approach – The following provides only a portion of Dr. Shah’s approach. Dr. Amitta Shah developed a psycho-ecological approach based on the findings that stress, anxiety, and side effects of psychiatric medication are the main causes of catatonia-like breakdown (Wing & Shah, 2000)(12)  This approach is not a specific psychological treatment, but a multi-dimensional, holistic approach based on a psychological framework of assessing the individual’s specific presentation of difficulties and formulating an individual plan of intervention, management, and support at various levels(13).

Implementing immediate strategies of support

• Prompting, cognitive refocusing (distraction), and other strategies – when a person is stuck and unable to move or complete a motor action, the general rule of thumb is to provide support via body coaching or prompting. However, it should be noted that heavy emphasis on moving may increase anxiety, so starting with a light tactile cue or a visual cue may be helpful. If the person seems to become more stuck with any kind of direct prompting or body coaching focused on moving, a cognitive refocusing strategy can be used. For example, music, rhythm, and sensory input can help initiate movement. Focusing on helping the person initiate an alternative motor pattern, like lifting one’s foot to kick a paddle drum vs. the obvious motor pattern of crossing through a doorway, is a way to help refocus the person’s mind off of the initial challenge of moving to a more relaxed and less loaded goal of simply lifting the foot to tap the drum. So, they may be able to start walking to kick the drum vs. just lifting the foot to walk over a threshold. (Collaborating with a neurologic music therapist is recommended to provide support and guidance with such approaches.) 
• Reducing decision making – sometimes, the dilemma of making a decision for someone with catatonia can increase shutdown or freezing. While reducing or removing one’s choice or decision-making may feel counter to supporting autonomy and agency, in the context of catatonia-related stress, the emphasis is to decrease stress. *Creating a clear understanding & agreement for reduced decision-making should always be made in collaboration with the individual.

Medical Intervention
Benzodiazepines – Within the medical and scientific community and regardless of the etiology or specific presentation, the standard first-line treatment for catatonia is benzodiazepines such as lorazepam, also known as Ativan. A “lorazepam challenge” is often used for diagnostic clarification. So, if effective, benzodiazepines can confirm catatonia and then be titrated as symptoms resolve(14).
ECT or Electroconvulsive Therapy – The history of ECT within disability communities, specifically autism, is undeniable and emotionally triggering. Forced ECT upon those who are not able to communicate or give their consent is still happening. These occurrences are extremely difficult and painful to process, and so it is with enormous respect and awareness of the emotional impact that accompanies this subject that I share the following. Modern practice and administration of ECT have changed and continue to evolve. ECT has been found to provide benefit for catatonia and may be considered if there is no response to Benzodiazepines or other psychological approaches(15). There is increasing evidence that ECT can be beneficial in treating catatonia and may be considered if there is no response to Benzodiazepines or other psychological approaches.

Take-Aways
Manifestations of catatonia, especially in the early stages, are both nuanced and difficult to recognize. One key may be to look for patterns of deterioration in movement from previous levels. Pausing, freezing, and unusual posturing such as twisting of the trunk, head, and neck for unusually longer periods of time, should be noted. Deciding a course of action can be daunting and overwhelming. But there are some things that can be considered and implemented almost immediately. However, when thinking about making any changes to current supports, it is always recommended to have a conversation with the person on the receiving end. Even if they do not have access to a reliable communication method, family members and support staff can still discuss catatonia symptoms and their reasoning behind plans to shift support within the individual’s presence.
So where is a good place to start? Well, begin thinking about the current loads that the individual is contending with and whether there have been any recent significant changes. Loads may be visible and invisible such as managing internal or external expectations such as school or work assignments, therapies, or the pressure to conform to societal expectations (i.e., ableism, masking.) Just being in the world in and of itself is a struggle, and knowing the world doesn’t understand or embrace neurodiversity carries a significant load. Increasing mindfulness around this and paying attention to increased signs of stress is important. Catatonia has the best outcomes when recognized early. Putting an emphasis on reducing stress and increasing self-care will be a benefit(16).
Whenever possible, engage in conversations with the individual who is living with this experience. Work together to identify stressors and make a plan towards decreasing them. Of particular note, how to support their movement may include not putting a heavy focus or emphasis on getting them to move when they are stuck or frozen. Reducing stress and pressure during moments like these is key. Families and support providers need to become informed and find support for themselves. Neurologic music therapy can be instrumental in providing guidance. If you are in the position of supporting an individual who you suspect may be struggling with catatonia, taking a step back, giving space, and thinking of alternative ways to scale back or shift your usual support strategies is a good first step. Using tactile or visual cues only, music, rhythm, and cognitive refocusing to support movement is less anxiety provoking.
While researching the various options for the support and treatment of catatonia, it is always recommended that the individual themselves direct their own care or be as much of an active participant as possible.(17) Medical interventions like Benzodiazepines and ETC are viable options that should be carefully considered but, in the meantime, using psycho-ecological approaches like Dr. Shaw’s can be a great place to start.

Citations: 

1. Whitty , Danny. “Tough Times .” Danny With Words, 6 Dec. 2022, https://dannywithwords.com/2022/12/06/tough-times/. Accessed 30 Jan. 2023. 
2. Sarantopoulos, Giorgena, and William Tziavaras. “Six Things You Should Know About Apraxia What it’s Like & What We *THINK* We Know .” I-ASC: International Association for Spelling as Communication , 27 May 2020, https://i-asc.org/six-things-you-should-know-about-apraxia/. Accessed 26 Jan. 2023. 
3. Jain, Divyesh, et al. “Step-aside: Neurodiversity-friendly Spaces Include Motor.” I-ASC: International Association for Spelling as Communication , 20 Apr. 2022, https://i-asc.org/step-aside-neurodiversity-friendly-spaces-include-motor/. Accessed 23 Jan. 2023. 
4. Shah, Amitta. “Catatonia and Catatonia-Type Breakdown in Autism.” National Autistic Society , 6 Dec. 2016, https://www.autism.org.uk/advice-and-guidance/professional-practice/catatonia-autism. 
5. Wilcox, James, and Pam Reid Duffy. “The Syndrome of Catatonia.” Behavioral Sciences, vol. 5, no. 4, 2015, pp. 576–588., https://doi.org/10.3390/bs5040576. 
6. Wilcox, James, and Pam Reid Duffy. “The Syndrome of Catatonia.” Behavioral Sciences, vol. 5, no. 4, 2015, pp. 576–588., https://doi.org/10.3390/bs5040576. 
7. Wing, Lorna, and Amitta Shah. “Catatonia in Autistic Spectrum Disorders.” British Journal of Psychiatry, vol. 176, no. 4, 2000, pp. 357–362., https://doi.org/10.1192/bjp.176.4.357. 
8. Shah, Amitta. “Chapter 1: Introduction.” Catatonia, Shutdown, and Breakdown in Autism: A Psycho-Ecological Approach, Jessica Kingsley Publishers, London & Philadelphia , 2019. 
9. Shah, Amitta. “Catatonia and Catatonia-Type Breakdown in Autism.” National Autistic Society , 6 Dec. 2016, https://www.autism.org.uk/advice-and-guidance/professional-practice/catatonia-autism. 
10. Shah, Amitta. “Chapter 2: Manifestations of Catatonia, Shutdown and Breakdown in Autism.” Catatonia, Shutdown, and Breakdown in Autism: A Psycho-Ecological Approach, Jessica Kingsley Publishers, London & Philadelphia , 2019. 
11. Shah, Amitta. “Chapter 5: Possible Causal Factors.” Catatonia, Shutdown, and Breakdown in Autism: A Psycho-Ecological Approach, Jessica Kingsley Publishers, London & Philadelphia , 2019. 
12. Bennie, Maureen, et al. “Autism-Related Catatonia: Shut Downs, Mobility, and Speech Difficulties after Early Childhood.” Autism Awareness Center Inc., 16 Nov. 2020, https://autismawarenesscentre.com/autism-related-catatonia/#:~:text=So%20what%20exactly%20is%20catatonia,catatonia%20before%20anyone%20else%20did. 
13. Shah, Amitta. “Chapter 7: The Psycho-Ecological Approach.” Catatonia, Shutdown, and Breakdown in Autism: A Psycho-Ecological Approach, Jessica Kingsley Publishers, London & Philadelphia , 2019. 
14. Crouse , Ericka L., and Joel B. Moran . “Catatonia: Recognition, Management, and Prevention of Complications .” Current Psychiatry, Dec. 2018, pp. 45–49. 
15. Rasmussen, Sean A, et al. “Catatonia: Our Current Understanding of Its Diagnosis, Treatment and Pathophysiology.” World Journal of Psychiatry, vol. 6, no. 4, 2016, p. 391., https://doi.org/10.5498/wjp.v6.i4.391. 
16. Seback, Noah, et al. “Neurodivergent Wellbeing: I-ASC The Experts .” I-ASC: International Association for Spelling as Communication , 9 Mar. 2022. Accessed 22 Jan. 2023.
17. Joncour, Nicolas. “Legal Capacity and the Right to Communicate .” I-ASC: The International Association for Spelling as Communication , 25 Jan. 2023, https://i-asc.org/legal-capacity-and-the-right-to-communicate/. Accessed 27 Jan. 2023.

Debbie Spengler MS, S2C Practitioner and I-ASC Leadership Cadre from Southern California. She is attempting to transverse the wide landscape of relationships in her life one day at a time. She believes in the power of language & is always listening for ways to level up her support!