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

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 those with autism

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.

Buy the Understanding and Addressing Behavior in Individuals with ASD E-Book

What is the treatment for catatonia in those with ASD?

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.

Further Reading to Reduce Stress and Anxiety:

Autism and the Stress Effect

The Autism Discussion Page on Stress, Anxiety, Shutdowns and Meltdowns – Proactive Strategies for Minimizing Sensory, Social and Emotional Overload

From Anxiety to Meltdown: How Individuals on the Autism Spectrum Deal with Anxiety, Experience Meltdowns, Manifest Tantrums, and How You Can Intervene Effectively

 

 

 

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16 Comments Moderation Policy

  1. Kristine says:

    We live in California, and we cannot find a qualified doctor.  Never give your autistic person Haloperidol IM, my daughter went in for pain and they gave her this horrible dangerous drug and had to be resuscitated. Stupid doctors. I think the stress from Conservatorship and ignorance caused my daughter either shutdown or Catalonia, not sure but she use to speak perfectly and has not said a word in two years…California no doctors who treat adults with ASD. Everyone treats us like a criminal! Just horrible, there is a doctor for everything else but not autism for adults, so very sad.

  2. Marlene says:

    My daughter has been diagnosed with Autistic Catatonia. We are having trouble located doctors that treat this condition. We are located in New York state. Any help in locating a doctor would be appreciated.

    • I am not able to direct you as I reside in Canada and do not know how your physicians and psychologists are governed there. Your best bet may be to contact your local health authority and ask how you can find out who has this specialty. I will tell you that autistic catatonia is not well understood. You could also contact the Autism Society of America New York chapter and see if they can direct you.

  3. Paul Motheral says:

    My daughter is 24 years old and I could write a book of the heartbreaking doctor appointments over the years. Living in a rural town in NW Tennessee, it has been a very hard thing. Even Vanderbilt could not understand why a 5 hour round trip would be traumatic and exhausting for not only my daughter.. but the rest of the family. Had I known 22 years later how hard it would continue to be it would have shocked me.
    If a President would announce Autism initiatives the way they have for HIV, Opiod crisis, etc.. maybe our beautiful children could get the proper care they need. Hope that made sense.

  4. Em says:

    Our 21 year old son is currently being treated for autistic catatonia. He is doing a lorazepam challenge and is also being treated for OCD. He started about 2 months ago now and there has been some improvement with the speed in which he is doing things but he still has a long way to go. Has anyone else done the lorazepam challenge and what we’re the results? Is there anything else we could try while doing this? Any help would be appreciated. 

  5. Brony says:

    I need to find a doctor to help my 17 yo son who has austitic catatonia, not diagnosed as they say it’s not as he comes out of it, but he gets stuck for hours on end. We are in south australia, my son hasn’t been to school for years and we need help and can’t find any. If anyone knows of a Dr anywhere in the world that can help please contact us

  6. Margy says:

    I have Catatonia like deteration. It flares up with stress. The best way to help is prompting helping individual to take action,stay calm and to help them to do something they enjoy doing. The goal being to relax.

  7. Diana L. Arca says:

    My grandson was diagnostic with Catatonia Associated with Autism Spectrum Disorder, he is 25 years old. I will like to  know more about it.

  8. Crystal Warr says:

    So what do you do when Lorazapam and ECT doesn’t seem to be working?

  9. Viv Dawes says:

    My daughter (14) has autism and virtually stopped talking completely since last May. She does sometimes speak when she ‘has to’ at school for example but otherwise seems mostly very shut down. She’s also often slow moving low mood and restless. She is also low weight due to restricting her food intake and so does lack energy sometimes -but I’ve felt for a while now that it could be catatonia. A CAMHs psychologist told me it most probably isn’t because catatonia means the individual doesn’t speak at all .  It definitely isn’t selective mutism.

    • I don’t know a lot about catatonia, but I am guessing you are right in your assessment of your daughter. This is some type of shut down. Language can still be present in catatonia albeit reduced. Have a look at this article – https://asatonline.org/research-treatment/clinical-corner/catatonia/

      “Some individuals with ASD exhibit precursor catatonia-like behaviors years before developing autistic catatonia; however, these are usually reported in hindsight. These precursors include socially passivity, a history of slowed movement, and slowness to initiate and respond. While the presence of these characteristics does not in and of itself predict a future comorbid diagnosis of catatonia, they are “red flags” necessitating increased observation and ongoing assessment. Because the development of autistic catatonia is a slow deterioration of the individual’s abilities, it behooves clinicians who are knowledgeable in early signs of catatonia-like symptoms to conduct a clinical observation and screening. These early steps will help guide intervention and appropriate referrals as soon as possible to reduce the potential exacerbation of catatonic symptoms (DeJong et al., 2014). An initial assessment is critical to ascertain the degree to which the catatonia-like deterioration has interfered with the individual’s everyday life, considering the impact on areas such as speech and communication, mobility, self-help skills, activities of daily living, leisure skills, and work or school.”

      See if you can find another psychologist for a second opinion.

  10. Michael Cheng says:

    Thanks for a very interesting article. When people are overwhelmed and under threat, our survival brain / nervous system responds with fight/flight/freeze.

    I wonder if catatonia is a type of freeze response?

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