Autism-Related Catatonia: Shut Downs, Mobility, and Speech Difficulties After Early Childhood

I can remember vividly the first time I heard about autism-related catatonia. It was at my Saskatoon, Saskatchewan conference in October 2017. Dr. Ruth Aspy spoke about it in her presentation on self-regulation. I had only heard of catatonia being associated with schizophrenia. Her explanation and description of autism-related catatonia got my mind turning about the parents whom I’ve talked to and have described a certain set of symptoms which I now understand to more than likely have been catatonia.

So what exactly is catatonia?

Dr. Lorna Wing in the UK was one of the first people to see an overlap between the features of autism and catatonia before anyone else did.

Autism-related catatonia affects 4 – 17% of the autism population. The onset, which is often gradual, is between the ages of 10 and 19. There is a deterioration in functioning, freezing episodes and other mobility, movement and speech difficulties. There is also a shutdown phenomenon associated with it. You can see the symptoms on some days, but not others and in some situations, but not others. It can also occur in highly functioning, highly intelligent individuals on the spectrum.

Catatonia in autism does not look the same as how it is described in the psychiatric condition. It does not have to be associated with schizophrenia and can present on its own or with other conditions.

Catatonia presentation in autistic people

In the new DSM -V (Diagnostic and Statistical Manual of Mental Disorders), catatonia is no longer considered to be a type of schizophrenia. There is the diagnosis of Catatonia Not Otherwise Specified which can be applied to other diagnoses like autism.

The DSM-V definition states that for a catatonia diagnosis, there has to be 3 of the following:

catalepsy (a trance or seizure with a loss of sensation and consciousness accompanied by rigidity of the body)
waxy flexibility (a decreased response to stimuli and a tendency to remain in an immobile posture)
stupor (absence of spontaneous movement)
posturing
agitation (not influenced by external stimuli)
mutism
negativism (motiveless resistance to instructions or attempts to move; unplanned and without purpose)
stereotypy (restricted, repetitive, and stereotyped patterns of behavior)
grimacing
echolalia
echopraxia (involuntary repetition or imitation of another person’s actions)

Seven out of twelve of these can be present in autism, so how do you tell the difference between autism and catatonia?

Specific indicators of an onset of a catatonia-type breakdown in autism may include any of the following:

1. Slowness of movement and verbal responses
2. Difficulty initiating and completing actions
3. Increased reliance on physical or verbal prompting
4. Increased passivity and apparent lack of motivation
5. Reversal of day and night
6. Parkinsonian features – tremor, eye rolling, dystonia
7. Excitement and agitation
8. Increased repetitive, ritualistic behavior

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. The most commonly seen manifestation of catatonia in autism is a gradual deterioration/breakdown in functioning and difficulty with voluntary movements. High functioning individuals may show episodic catatonia-type difficulties or intermittent shutdowns which will miss recognition.

Clinicians do not generally recognize 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, therefore catatonia type breakdown is rarely picked up at an early stage, and is often misdiagnosed and mistreated.

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What is the treatment for catatonia for autistic people?

Dr. Amitta Shah, clinical psychologist, and Dr. Lorn Wing have recommended a psychological approach which is based on their 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.

The main aspects of this approach include the following (Shah, 2016):

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 program, 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.

If you would like to learn more, here is a video interview with Dr. Amitta Shah. I can also recommend reading her article.

Dr. Shah also has a new book out on catatonia. This ground-breaking book provides the first detailed clinical analysis of the various manifestations of catatonia, shutdown and breakdown in autistic individuals, with a new assessment framework (ACE-S) and guidance on intervention and management strategies using a psycho-ecological approach. It is a good read for parents as well as individuals with autism. Dr. Shah highlights many case studies that illustrate what catatonia looks like and how it affects the lives of people who have it.

Misdiagnosis of catatonia can have devastating effects

The consequences of misdiagnosis of catatonia can have devastating effects on both the person with autism and the family. People experience:

a lack of empathy and support
wrong assumptions about the person
behaviors of concern dismissed as just being part of autism
unwillingness to review or cease psychiatric medications which could be contributing to catatonia
refusal of a request for further assessment or referral to a specialist
parents are heavily criticized
a lack of understanding that chronic catatonia can deteriorate to severe levels

We are in the early stages of awareness about autism-related catatonia. We need to educate ourselves in order to give these individuals the right support.