by Ciara & Helen Humphreys.
My daughter Ciara is 22. She was diagnosed with Aspergers Syndrome when she was 4 and with severe autistic catatonia when she was 9 years old.
She has experienced numerous episodes of catatonic stupor (immobility lasting most of the day). On one occasion and shortly after transitioning to adult services, she became catatonic for 4 days. During this time she stood almost motionless in the same position and was unable to speak, eat, or drink unaided. She experienced intense levels of anxiety as she feared everything around her was contaminated. During these episodes she was both physically and mentally stuck. The mental stuckness resulted in a continuous loop of negative thoughts constantly playing over in her mind.
Increased stress and anxiety, high levels of stimulation and periods of increased self-awareness can lead to a worsening of her condition.
Although Ciara’s condition is not currently acute, she continues to experience daily episodes of stuckness lasting from a few minutes to around an hour. Mirrors appear to be a particular trigger and result in Ciara losing track of time. This impacts her ability to organise her daily activities which leads to increased feelings of frustration and anger and restricted educational and occupational opportunities.
Behavioural approaches can be effective if Ciara follows guidelines*. Managing her anxiety is the single biggest challenge for Ciara and for those supporting her.
We have found knowledge of catatonia in autism to be poor amongst mental health professionals and specialist training on the complications difficult to access. The use of antipsychotic medication appears to result in a worsening of Ciara’s symptoms and with no clear evidence-based treatment protocols in place, we are very concerned for Ciara in the future when we are no longer able to advocate on her behalf.
Studies to date highlight the need for quality research and better reporting of side effects and adverse events. Without this much needed research, we fear that people with autistic catatonia face a very uncertain future.
Shah, A., & Wing, L. (2006). Psychological approaches to chronic catatonia-like deterioration in autism spectrum disorders.
A clinical view: Dr Amitta Shah, Consultant Clinical Psychologist
Catatonia is a complex neuro-psychological disorder which can affect children and adults with Autism Spectrum Disorder, including those with High Functioning Autism and Asperger Syndrome. Clinicians do not generally associate Catatonia with Autism, and thus the condition is often misdiagnosed and wrongly treated and hardly ever picked up at an early stage. Clinicians recognize Catatonia easily when the person is in a catatonic stupor state. This is probably why Ciara’s Autistic catatonia was diagnosed at the age of 9, but this is unusual. Individuals with Catatonia may never show the full blown Catatonia in this easily recognizable form, but show various other difficulties associated with movements, volition and activity.
Specific indicators of an onset of Autistic Catatonia can include any of the following:
• Freezing during actions
• Increase in repetitive movements and hesitations
• Difficulty in crossing thresholds and completing movements
• marked reduction in the amount of speech or complete mutism
• difficulty in initiating and inhibiting actions
• increased reliance on physical or verbal prompts for functioning
• increased passivity and increased social withdrawal
• increase in repetitive and ritualistic behaviours
• getting locked in postures
There is very little research evidence to guide medical and non-medical treatment of Autistic Catatonia. (Summarised in Dhossche et al, 2006). The lack of research interest and funding in this area is of major concern. As seen in the case of Ciara, Catatonia poses huge challenges and worry about the future to the individual and their families/carers. It causes enormous stress, frustration and affects the quality of life of the individual in extreme ways.
In the absence of relevant research, it is important for professionals and carers to refer to guidelines developed by experienced clinicians. (Dhossche, Shah and Wing (2006). It is imperative for clinicians not to overlook that psychiatric medication may often trigger or worsen Catatonia in individuals with Autism (as reported by Ciara). Psychological approaches which investigate the individual’s anxiety and stress and address this using a non-medical holistic management plan based on a comprehensive psychological assessment can be very effective (Shah & Wing, 2006).
Dhossche,D. Shah,A. & Wing,L. Blueprints for the Assessment, Treatment and Future Study of Catatonia in Autism Spectrum Disorders. Chapter in book edited by Dhossche et al (2006) cited below.
Dhossche, Wing, Ohta and Klaus-Jürgen Neumärker (2006) Catatonia in Autism Spectrum Disorders. Elsevier Inc. USA.
Shah & Wing (2006) Psychological Approaches to Chronic Catatonia-Like Deterioration in Autism Spectrum Disorders. Chapter in book edited by Dhossche et al (2006) cited above.
Wing,L. & Shah,A. (2000) Catatonia in Autism spectrum disorders. British Journal of Psychiatry. Vol. 176, 357-362.