Monday, 10 May 2021

Self-Injurious Behavior (SIB) in Autism– if all else fails, why not ECT?


I did mention Electroconvulsive Therapy (ECT) in a recent post as a therapy for Self-Injurious Behavior (SIB) in autism and since there has been a review paper published very recently, it is the topic of today’s post.

There was a previous post on this subject:-

Electro Convulsive Therapy (ECT) and Cannabidiol (CBD) in Autism

By coincidence, Mr Electric, Elon Musk, has just revealed that he has Asperger's Syndrome. I don't think he will be fitting ECT to his Tesla vehicles anytime soon.  ECT is likely only going to be used by those at the other extreme end of the autism spectrum, the ones who do not know was money is, let alone cryptocurrencies.

There are many possible ways to treat someone who self-injures or indeed is aggressive towards others. From a psychiatric unit you might get various psychiatric drugs (antipsychotics etc), protective and restraining devices and in some cases Electroconvulsive Therapy (ECT).

Some literature on ECT suggests that it is effective in almost all cases of SIB.

This blog is mainly about novel personalized medicine and in the case of SIB there are multiple choices, which may, or may not be effective in any one case. In my son’s case the SIB was driven by an ion channel dysfunction which is fully treatable with a cheap little yellow pill, Verapamil.


Electroconvulsive Therapy (ECT)

ECT is a psychiatric treatment where seizures in the brain are electrically induced in patients to provide relief from mental disorders.  There are no muscular convulsions.  ECT involves multiple administrations, typically given two or three times per week until the patient is no longer suffering symptoms. ECT is administered under anesthesia with a muscle relaxant.

ECT is often used with informed consent as an intervention for major depressive disorder, mania, and catatonia.

Unfortunately, in autism, maintenance ECT therapy is required.  It is a treatment, not a cure.

The study below refers to catatonia, which you may not be familiar with.

Catatonia is a group of symptoms that usually involve a lack of movement and communication, and also can include agitation, confusion, and restlessness. Until recently, it was thought of as a type of schizophrenia.




Electroconvulsive Therapy (ECT) for Autism Spectrum Disorder Associated with Catatonia and Self-Injury: A Clinical Review 



We reviewed published clinical reports that evaluated treatment effects of electroconvulsive therapy (ECT) with children, adolescents, and adults who had autism spectrum disorder (ASD), catatonia, and self-injury.


Published reports were identified from an internet search and summarized according to seven review criteria: (a) participant description, (b) clinical presentation, (c) previous treatments, (d) course of ECT, (e) treatment outcome, (f) side effects, and (g) evaluation methodology.


ECT was associated with clinical improvement in all participants. Most notable benefits included decreased self-injury, acquisition or recovery of functional life skills, elimination of catatonic symptoms, and return to baseline functioning. Maintenance ECT was typically required to sustain improved clinical status in the months and years following acute ECT.


There appears to be sufficient evidence that supports therapeutic benefits from ECT in persons with ASD, catatonia, and self-injury. However, measurement methods and evaluation design vary greatly among reports, there may be a publication bias towards cases with positive findings, and more rigorous clinical research is necessary particularly concerning optimization of maintenance ECT to maximize benefit and monitor for any adverse response.


The reports and summarized results are presented in Table 1. Among the participants (N=14), 28.5% were female and 71.4% were male ranging in age from 8 to 33 years old. From this sample, 35.7% were children, 28.5% were adolescents, and 35.7% were adults. Beyond the primary diagnoses of ASD and catatonia, the participants had comorbid conditions of intellectual disability, attention-deficit hyperactivity disorder, bipolar disorder, major depressive disorder, Tourette’s disorder, Addison’s disease, and neuroleptic malignant syndrome. The clinical presentation of participants at the time of referral for ECT was uniformly debilitating. Many participants refused to feed themselves, were significantly underweight and malnourished, and required nasogastric or gastrostomy tube feeling. Their general level of adaptive functioning was typically compromised, described as “needing assistance with feeding, getting dressed, brushing his teeth, and combing his hair”, displaying “significant mood instability characterized by irritability, tantrumming, alternating laughing and crying episodes as well as intermittent insomnia and anorexia”, and exhibiting “spontaneous episodes of punching, kicking, and biting, often requiring her to be restrained by several adults”. Self-injury was severe and long-standing, for example, a child, adolescent, and adult who had a “five year history of self-injury” that “included slapping and punching his head as well as banging his head or his knees and shoulders”, performed “hand-to-head, knee-to-head, and hand-to-body self-injury”, and “struck knees against his head, hit his head against a fixed surface or object, punched his face and head with hands, pressed fingers against his eyes, and bit any part of his body”. The seriousness of cases was reflected in participants who required inpatient hospitalization and were no longer able to attend school, live at home, or participate in the community. Use of protective equipment such as hard and soft helmets, padded gloves, arm and body guards, and rigid arm restraints restricting flexion at the elbow was uniform across reports.

Access to ECT in the USA varies greatly among states based on the presence or absence of procedural restrictions, practice regulations, administrative requirements, and stipulations regarding consent. This variability from state-to-state impacts patient care and evaluation of effectiveness of ECT when procedures and protocols are not uniform and administered consistently.

Maintenance ECT in which the number of treatment sessions was gradually decreased during the hospital stay preceding and then following discharge was indicated in nearly all clinical reports. Haq and Ghaziuddin  wrote that “withdrawal of maintenance-ECT in patients with autism and catatonia often precipitates relapse of symptoms, perhaps more rapidly and predictably than in the treatment of mood disorders”. They advised that m-ECT be continued as long as clear evidence shows it benefits the patient. Similarly, Wachtel, Hermida, and Dhossche proposed that ECT should be considered a “treatment rather than a cure” and that patient relapse remains a concern even with m-ECT in place. Indeed, many of the reports we reviewed found that participants relapsed quickly when ECT was discontinued or treatment frequency reduced, requiring a readjusted m-ECT schedule and/or concomitant pharmacotherapy to confer therapeutic benefit, While our review demonstrates that there are presently no precise parameters and guidelines for administering m-ECT to persons with ASD, the demonstration that ECT regimens must be tailored to unique patient circumstances is in line with m-ECT paradigms among neurotypical individuals.




Self-injury and aggression in autism can become overwhelming and, one way or another, have to be treated.  Electroconvulsive Therapy (ECT) clearly is one option that may be available, depending on where you live.

If you stop the maintenance therapy, the behaviors will return.  Ideally you live near the hospital. 

In terms of what it is actually doing, I think we can compare it to an old computer whose screen keeps freezing, you just restart it and hope for the best.  Then you know it is time to look around for a new computer, before you lose whatever is on the hard drive.  ECT is like a system reset, without knowing what the underlying problem is. 

In the absence of an effective alternative, why not ECT?

Is there a pharmacological "reset button" for at least some aspects of some autism? A short course of steroids does something along these lines; you can even have a single dose, as in therapy for an asthma attack/exacerbation.  Suramin is not really a monthly "reset", because the drug has a very long half-life and so it is there all month long, just at a slowly reducing level.  


  1. Risperdal stopped my daughter's SIB completely but after a few weeks there was a bad side effect: oculogyric crisis, so I discontinued the drug...I am still looking for a drug with the same benefit.but without bad side effect...i am afraid it does not exist...

    1. It may well exist, but just not be commonly used to treat SIB. Most doctors would only know of a handful of approved treatments. You may benefit from looking at worked for other people.

  2. The only time my son was self injurious was due to gastrointestinal issues. Twenty years of observation and daily journaling has proven that. So far, the only treatment that works is to avoid offending foods. I rarely see this mentioned as a possible culprit behind SIB.

    1. Tanya, you raise a very important cause of some people's SIB.

      Dr Martha Herbert wrote that because Andrew Wakefield (of the MMR vaccine story) was a Gastroenterologist, for many years you could not get any funding for anything making a link between GI dysfunction and autism, or indeed I suppose autistic behaviors like SIB.

      I recall in 2019 meeting a mother at an autism conference in London I spoke at, she was told by a UK Gastroenterologist that her child with autism would not be treated and she should look abroad. She did and found a doctor in Italy, who did treat her child. It sounds very strange, but it happened.

      The well known US "autism gastroenterologist" Arthur Krigsman, was a colleague of Wakefield and is still seen as controversial by some. One of his collaborators is Federico Balzola a gastroenterologist from the University of Turin in Italy. I met him at that London conference and he is a very serious mainstream doctor, with many interesting insights.

      In recent years, Dr Timothy Buie, a gastroenterologist from Boston Childrens Hospital, has written a lot about autism and made Youtube videos to help parents. Something simple like reflux can easily trigger SIB, let alone the more complex GI dysfunctions identified by Balzola and Krigsman.

    2. Exactly !!! My brother's SIB almost disappeared once we addressed his reflux issues. Most doctors would not even hear us out. They just brush you off saying it's not possible. But when it comes to issues like this, a lot of mainstream doctors have a lot to learn. My sister suffered from persistent hives(idiopathic urticaria) and the only thing doctors would do was prescribe an antihistamine. But a simple elimination diet worked wonders(and saved her a lot of money).

  3. Hi Peter

    My son will be requiring a blood test soon, the last one he had two years ago he was a nightmare kicking & screaming the clinic down & of course he`s bigger now. Any ideas on how to go about this, the normal psychological coaxing & tactics they use on NT kids won’t work on him since he also remembers exactly what a needle does.

    I did consider Phenergan to make him drowsy but of course it can’t interfere with the test result.

    1. Ross, blood draws are indeed very stressful; in most cases particularly so for the parent. It is another hurdle to overcome. Wait till you have master injections into the rear jaw at the dentist.

      Having a blood draw is traumatic because the child does not understand what is happening and it becomes worse if the nurse is either too weak, or too tough.

      I would suggest you go down to your local pharmacy, explain the problem and ask to buy a couple of plastic syringes and the very thick needles not used for human skin. These are needles used for example to extract saline from a big plastic bottle through its stopper.

      Then you can practice at home injecting water into apples, oranges etc. Hopefully you can get your son to safely use the syringe, even with the needle, if you are careful. Then you can inject Teddy bears or similar. Your son gets to play doctor and understand what a syringe is.

      Then you practice at home (without the needle) with you doing the blood draw on your son. When he gets to the clinic he will not be surprised and if he knows that after a successful blood draw he gets an ice cream reward, or similar, he should be OK.

      “First syringe in arm and then ice cream.”


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