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.
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.
Further Reading to Reduce Stress and Anxiety:
Editorial Policy: Autism Awareness Centre believes that education is the key to success in assisting individuals who have autism and related disorders. Autism Awareness Centre’s mission is to ensure our extensive autism resource selection features the newest titles available in North America. Note that the information contained on this web site should not be used as a substitute for medical care and advice.
Dr. Amitta Shah wrote in her book on Autistic Catatonia, that STRESS is the trigger for a catatonic episode. It used to be called SHELL-SHOCK for WW1 Veterans. When STRESS gets so overwhelming, it is traumatic, which will trigger the FREEZE/SHUTDOWN response. For Autistics the ENVIRONMENT is often OVERWHELMING due to SENSORY SENSITIVITY. If you compare that to the WINDOW OF TOLERANCE MODEL or PANKSEEP’s Seeking System, it becomes obvious, these are all the same REACTIONS TO STRESS in the environment, when you can no longer cope , fight it, or run away from it, the last resort is FREEZE. We all have the same nervous system reacting to THREAT IN THE ENVIRONMENT. What is determined as “threat” depends on the individual. But all the more, for autistics the environment therefore is KEY TO PREVENT shutdown/freeze or catatonic states. It is only common sense.
Corina, thank you for taking the time to write and share this important information.
Hi my son who is 25 has been diagnosed with autistic catatonia we live in Tasmania, we have been seeing a great psychiatrist from Melbourne, have slowly started to take our son of resperidone and introduced zolpidem having great results.
Thank you for sharing your success story.
My 14 year old son was diagnosed with autistic Catatonia in Feb 2022, we used lorazepam for few months , and later another psychiatrist said he was misdiagnosed as autistic Catatonia , so he stopped lorazepam and put him on Fluoxetine. He has become very aggressive and requires lot of instructions even to do a small task like brushing his teeth. His speech also became very slurry . Not sure what treatment options we have as we live in TX and ECT is not permitted for patients unless they attain 18 years
Dear Brony, My daughter has Infantile Autism since birth. When she was six years old she went into a catonic trance not moving or aware, could be placed in a position and she would remain like that, move her another way and she would remain in that position. The school nurse was giving her childhood vaccines she had never received before because she was allergic to eggs, milk and other protein-like babyfoods. Doctors would not give her vaccinations because the shots are developed in duck eggs. (1970). So in 1976 unbeknownst to me, she was given the shots by this nurse. The nurse was about to take her to the hospital, taking her keys out of her smock and dropped them on the table beside by daughter. Hearing the keys rattling she instantly came out of the trance as though nothing had happened! Not until 2006 while riding in a car with this former school nurse she mentioned to me what had happened in 1976! The conversation came up because I had told her about my daughter having to be transferred by MedEvac to Hospital across Puget Sound (Washington State, USA) in a catonic trance where the Emergency Room doctors could not revive her. After a couple of hours my husband happened to remove a candy bar from his shirt pocket and was unwrapping it. The sound of the crinkling wrapper suddenly brought her out of her trance, instantly as though nothing had happened! When I told the nurse that, she told me what had happened 30 years previously. The article talks about how trances are brought on by stress, among other factors. My daughter not only goes into trances caused by stress and anxiety brought on by the environment she is in, but also by persons who are caring for her who are going through stressful situations and only thinking about things that are stressful. She picks up on others’ emotions. This is a fact. If you are feeling stressful emotions or are upset about something, your child might be picking up on this. I think that we, as parents, certainly are stressed quite a lot.
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.
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.
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.
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.
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
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.
Margy, thank you for writing and sharing your thoughts. Catatonia is stress related. I have also written a blog on calming strategies – https://autismawarenesscentre.com/calming-strategies-to-support-a-person-with-autism/
My grandson was diagnostic with Catatonia Associated with Autism Spectrum Disorder, he is 25 years old. I will like to know more about it.
There is not a lot of information on this topic. I would recommend that you read this book as it is the most comprehensive book written on this subject – https://autismawarenesscentre.com/shop/autism/catatonia-shutdown-and-breakdown-in-autism-a-psycho-ecological-approach/ You can also listen to this interview with the author of this book – https://network.autism.org.uk/good-practice/evidence-base/autism-and-catatonia-interview-dr-amitta-shah
So what do you do when Lorazapam and ECT doesn’t seem to be working?
I am not a doctor so am not able to comment on your question. Does your doctor know anything about catatonia? Dr. Ruth Aspy knows quite a lot about catatonia. You could try contacting her through her website- https://texasautism.com/blog/
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.
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?
Michael, I think you could be right in certain cases. Here is a research paper on catatonia as a fear response – https://www.researchgate.net/publication/8234394_Scared_Stiff_Catatonia_as_an_Evolutionary-Based_Fear_Response and this article (scroll down to find the section on fear – https://www.psychiatryadvisor.com/home/schizophrenia-advisor/the-many-misconceptions-of-catatonia-treatment-is-often-successful-with-the-right-knowledge/)