Dr Amitta Shah is a Consultant Clinical Psychologist with over 35 years’ experience in working with autistic children and adults. She has expertise in the diagnosis and management of catatonia in autism and has published papers on the subject with Dr Lorna Wing. Here she shares her insight and expertise of this under-recognised and poorly understood condition.

What is catatonia?

Catatonia is a complex neuro-psychological disorder which refers to a cluster of abnormalities in movement, volition, speech and behaviour. Historically, the term catatonia has been associated with schizophrenia and psychoses, but it is now recognised that it can occur with a range of conditions. 

Catatonia in varying degrees can occur in autistic children and adults. Studies suggest that between 12-18% of autistic people may present with varying levels of catatonia (Wing & Shah, 2000; Billstedt et al. 2005; Ghaziuddin et al, 2012). However, actual prevalence is likely to be higher as there are probably a lot more people with autism and catatonia who do not have a diagnosis and are not known to services.

Clinicians do not generally recognise the gradual presentation which occurs in autistic people rather than the full blown catatonic stupor state which is easy to diagnose and familiar to clinicians. Thus, catatonia type breakdown is rarely picked up at an early stage, and often misdiagnosed and mistreated.  However, if it is picked up early, it is easier to treat and can be reversed. Catatonia type breakdown can progress to full blown catatonia which is extremely difficult to treat and can lead to total immobility, dependence on all aspects of daily living and can become life-threatening. 

Catatonia-like breakdown causes enormous stress to families and affects the quality of life of the individual concerned in extreme ways. It is acknowledged that it is difficult to diagnose and treat especially as the symptoms and severity can fluctuate from day to day and also over time. It is one of the most enigmatic and challenging aspect of autism but the lack of clinical and research interest in this condition is of great concern and needs to be addressed. 

Symptoms of catatonia in autism

As early identification and diagnosis is important, it is crucial for all relevant professionals, clinicians, parents and carers to be aware of early indicators of a catatonia-like breakdown in autistic people. In particular, catatonia-like breakdown should be considered as a possible diagnosis for any autistic individual who shows a marked and obvious deterioration in:

• movement
• volition
• level of activity
• speech
• a regression in self-care, practical skills and independence compared to previous levels.

Specific indicators of an onset of catatonia type breakdown may include any of the following:

• increased slowness 
• freezing during actions 
• increase in repetitive movements and hesitations
• difficulty in crossing thresholds and completing movements
• marked reduction in speech or complete mutism
• difficulty in initiating and inhibition of actions
• increased reliance on physical or verbal prompts for functioning
• increase in repetitive and ritualistic behaviours
• getting locked in postures.

Treatment

There is very little research evidence to guide medical treatment of catatonia in autistic people. The studies which are published on the treatment of catatonia in autism spectrum disorders (ASD) are mainly single case studies using various psychiatric medications or electroconvulsive therapy (ECT) for cases with acute catatonic stupor.

There is a recent paper (De Jong, Bunton and Hare, 2014) which has reported a systematic review of the literature on all interventions used to treat catatonic symptoms in autistic people. The conclusions are that the quality of the studies is poor and there is no convincing evidence that any particular medication or ECT is effective for catatonia type breakdown. The studies also worryingly ignored the side-effects of these treatments and rarely reported long term follow-up of effects.  

In the absence of relevant good quality evidence based research, it is important for professionals and carers to refer to guidelines developed by experienced clinicians. Treatment guidelines based on clinical experience are given for mild, moderate and severe catatonia in Dhossche, Shah and Wing (2006). It is imperative for clinicians not to overlook that psychiatric medications may trigger or worsen Catatonia in autistic individuals. Also, drastic treatments such as ECT and/or high doses of lorazepam should only be tried as a very last resort in cases of severe catatonia which is life-threatening.

We recommend a psychological approach which is based on our finding that stress and anxiety, and side effects of psychiatric medication are the main causes of catatonia-like breakdown (Wing & Shah, 2000). This is an individual approach which investigates the particular stress for the person concerned and addresses this based on a comprehensive psychological assessment and working with carers and local multi-disciplinary teams to implement a holistic plan. This is described in Shah and Wing (2006). The main aspects of this approach include the following:

• early identification of possible indicators
• psycho-education to promote understanding of the condition, in particular to carers, professionals and service providers
• searching for and eliminating any possible causes such as psychiatric medications
• assessment of the person’s autism and their vulnerability to stress
• identification of stress factors which may include environmental, lifestyle, and psychological
• reducing and eliminating stress factors which may include changes in the environment, daily programme, increased staffing and support, etc.
• providing verbal and physical prompts to overcome movement difficulties
• maintaining and increasing activities which the person enjoys or has done so previously
• providing external stimulation and motivation  at appropriate levels to keep the person engaged and responsive and active 
• increasing structure and predictability and occupation.

Further information

• Shah, Dr. Amitta, 2019, Catatonia, shutdown and breakdown in autism, Jessica Kingsley Publishers
• Read our advice and guidance articles on Catatonia