Catatonia is a state of unresponsiveness that affects a person’s ability to move and react to external stimuli. It is often associated with mutism, echolalia (repeating the words of others), facial grimaces, and withdrawal. It is most often associated with schizophrenia and bipolar disorder but it is becoming increasingly associated with autism. According to a recent study, “Attentuated behaviours indicative of catatonia was relatively common in young people with autism with up to 20.2% having an existing diagnosis of catatonia and evidence of a relationship between attenuated behaviours and measures of depression and repetitive restricted behaviours” (Breen and Hare, 2017). The importance of recognizing catatonia is that this comorbidity to autism is treatable and may thus offer a way of increasing the quality of life for affected patients (Psychiatric Times, 2008). Catatonia left untreated tends to get worse and in some cases may be life threatening. If you have concerns, get your child evaluated by a professional.
This blog is written by a friend and autism advocate Alison Wiles. Alison is well known in the UK and in social media. In Facebook she helps maintain the Catatonia in autism page.
I am a mother to a beautiful gentle son age 20 who has autism, learning difficulties, epilepsy and bipolar disorder. When I look back to January 2013 little did I know then that catatonia reared its ugly head and started to erode at his health and wellbeing.It is known that stress, anxiety and fear are some of the precipitating factors for catatonia-like symptoms. My son had suffered a terrible breakdown, he was constantly pacing the house with his arms bent at the elbows and his hands pointing downwards with his head flexed back. He was hitting his whole body with great force and extremely distressed. This went on for 3 months, it was soul destroying. He should have been at his special school until 19 but was unable to go back. I didn’t know about catatonia then, but I do now.
As our son has epilepsy we thought the catatonic-like symptoms could be seizure related. We were so confused. Professionals could not provide answers, they too were out of their depth and puzzled by these strange behaviours they hadn’t seen before in autism. We were left to get on with looking after him and trying our best to get him back to us. In desperation, we sought an opinion by a private psychiatrist as no one could help us on the NHS. He suggested that we reduce one of his two anti-epileptic medications over 10 days to practically zero as he believed he was being over medicated. This was in the August of 2013.
In November of that year he nearly lost his life to non-convulsive status epilepticus which is a constant state of seizure activity. He was completely locked in for 8 hours, his eyes rolled back, body completely rigid and arched backwards, he could not move eat or drink and had to be put on IV fluids.
I remember screaming out and pleading to the doctors in the Acute Admission Unit in hospital to give him an injection of Lorazepam. They phoned Queens Square in London for advice and gave their consent to administer. A few seconds after he was back with us! I can’t remember why or how I thought of Lorazepam but I guess in times of desperation, when you think your child is not going to make it, the answers come flooding in.
He spent 8 days in hospital but had a setback and another seizure and went back in again. He was still very seriously unwell and started to shuffle walk around the ward, inch by inch, still with his arms bent at the elbows and hands pointing downwards. It was so painful to watch him move slowly, every move of his body was an incredible effort. His posture at times was still so rigid and tense. When I look back to this time I do believe now that catatonia was still there, but incredibly difficult to distinguish from a non-convulsive status epilepticus. I am no medical professional but I do know my son. I understand the difficulty doctors have in identifying catatonia in autism, as a lot of the symptoms are similar. Certainly, my son’s psychiatrist, after watching a video I made of him, straightaway said it could be catatonia but did not elaborate on this as she said she has seen inpatients who have the severe form. My son probably has mild to moderate. We felt we were not being taken seriously about our concerns.
Here in the UK Dr Amitta Shah, Consultant Clinical Psychologist, is the lead on catatonia in autism. Although my son is not officially diagnosed, catatonia-like symptoms have surfaced once again in the last month. This time he has Echophenomena (echolalia and echopraxia) and many other symptoms such as negativism, comorbidity of bipolar disorder diagnosed at 19, psychological stressors (he’s currently in a group home), excited and immobile states, automatic obedience, takes 20-40 minutes to get in and out of the car, difficulty crossing thresholds, lip smacking, inappropriate verbal usage, hand tremors and sweaty palms possibly due to side effects of psychiatric medication and repetitive eye movements. His body is once again rigid rock solid at times with his arms bent at the elbows and hands pointing downwards. Eating a meal can take a very long time from two to 5 hours.
Dr Shah’s intervention and therapy is a thorough clinical assessment and psychological approach and also looking at psychiatric medications. Then she will make recommendations to staff in care settings, parents and education settings on how best to alleviate the young person’s difficulties. At the moment, we are waiting for the psychiatrists to agree to funding an assessment with Dr Shah. In the meantime, they are recommending a specialist sensory processing Occupational Therapy assessment and an ambulatory EEG over two days. It is good they are looking at our son’s sensory problems and epilepsy but at the same time this further delays the fundamental help our son needs with the catatonia!
Many thanks to Manuel for allowing me to write this post and raising awareness of this little known condition in autism spectrum disorders.
For further information on catatonia in autism you can join our Facebook group here
Breen J, Hare DJ. The nature and prevalence of catatonic symptoms in young people with autism. J Intellect Disabil Res 2017 Feb 1. Doi: 10.1111/jir.12362 [EPub ahead of print]
Psychiatric Times. Treating Catatonia in Autism 2008 http://www.psychiatrictimes.com/articles/treating-catatonia-autism