Friday, February 27, 2009

Johns Hopkins Reports ECT Helped Autistic Child Reduce Severe Self Injury

Deanna Chieco, in the Johns Hopkins Newsletter, reports on a case study in which ECT, electro convulsive therapy, was used to treat a young autistic child who was incurring 109 self injurious incidents per hour. With ECT the self injurious behavior was reduced from 109 to 19 incidents per hour, permitting the child to be able to attend educational programs, behavioral therapies and family activities and thus dramatically improving the child's quality of life.

This article and the study on which it reports should be must reads for parents of autistic children, neurodiversity ideologues, autism therapists and health care professionals and researchers. Reducing severe self injurious behavior should have no ideological component. Even Michelle Dawson, Ari Ne'eman and Estee Klar will have a difficult time arguing that dangerous, life restricting behaviors should not be reduced by treatment.

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Christine said...

I agree self injury is a big problem for those on the autism spectrum. While I disagree with ECT as a form of treatment for this I will explain why.

First of all ECT is not regulated, some doctors have a vested interest monetary wise in the machines used.
Studies have shown an increased risk of permanent brain damage in people with lower IQ's and the elderly. It disturbs me that electrodes were put on both sides of the brain and not just the right considering memory is on the left side of the brain. The beneficial affects have been shown as short term. When was the ECT given to the child and what follow up studies are being done? Could a less invasive treatment such as VNS (vagus nerve stimulation)be used? It uses electrical impules with a surgically implanted pulse generator to affect mood centres of the brain. This treatment is FDA approved. What about TMS (transcranial magnetic stimulation) while an experimental procedure it is less invasive. TMS uses magnetic fields to alter brain activity. A large electromagnetic coil is held against the scalp, near the forehead to produce electrical currents in the brain. One last treatment deep brain stimulation-while highly experimental the brain is stimulated with surgically implanted electrodes. While doctors are split 50/50 on the use of ECT this does not bode well to me as a parent. While I can understand the horror a parent feels to see their child injure themselves I think another doctor should be consulted and these other treatments explored before we go to such extremes as ECT. Obviously the child could not consent to the use of ECT so what happens when our children are older and not in our care? Are doctors going to have the say on whether an individual with autism has ECT?

I don't think you were advocating for the use of ECT Harold I think you were bringing attention to the self injury realization people with autism have and how it affects the individual and the family. I really hope other families do not take such extreme actions until various other treatments are tried. I am not saying this family did not explore and exhaust all options but this is to extreme in my opinion when data in most states is not regulated on the effects of ECT.

Unknown said...

Christine thank you for your very thoughtful and well informed comment.

I am trying to bring awareness to the realities of autistic self injuries. Attempts to describe the realities faced by the more severely affected by autism are often met by attempts to suppress the discussion or to demonize and marginalize the person making the attempt.

As for ECT, NO, I am not advocating for it generally nor for any specific case. I am saying that this study should be examined and the therapy considered and not simply rejected in a knee jerk reaction.

I think you make good and serious points in your critique of ECT and again I thank you for doing so.

I think though that ECT, if it is described accurately in the Johns Hopkins newsletter report, accomplished the results indicated in that report, reducing self injuries from 109 per hour to 19, enabling other therapies to be used and permitting the child to participate more fully in life, should be available,subject to careful controls and appropriate medical direction.

Again, this is a situation where other therapies were of no assistance. The real life choice, as I understand the report, was to permit the extreme self injurious behavior to continue or to try ECT. The report indicates that the ECT was successful.

I ask respectfully, should the child have been left to continue with extreme self injury?

Christine said...

Hello Harold,

I am happy the results thus far have been positive for this boy. I do not think the child should be left to suffer through his self injurious behavior. In this case it might have been the only option. What disturbs me about this case is the controls that were put in place after treatment. The article does not say anything about the effects over time. While ECT did immensely diminish the behaviors will it continue to do so? What protocols are in place for follow up? Was a cytochrome P450 test done? This test can help identify genetic factors that influence response to certain antidepressants and some other medications. What about cingulotomy surgery? The cingulum consists of fibrous bands that assist in communicating the brains behavioral and emotional messages. While a treatment used in extreme rare cases for people suffering with obsessive compulsive disorder it has relieved or even cured people with the disorder.

I am making these points because I hope this treatment will not have to be used repeatedly on this boy. I am not saying this is the case but, we as consumers do not know for sure.

I am delighted this little boy has the opportunity now to have a better quality of life. I think this is the ultimate goal but, were the parents aware of these other treatments? I do not find the article explored all treatment options we as parents should know about. Do we as parents have the time to know of these various treatment options if not disclosed? Information is key to making an informed decision for the betterment of our children and this article is lacking in this area.

I sincerely hope ECT worked for this little boy and his family and continues to do so without having to be given again. I hope this is not another case of parents not being able to access ABA treatment immediately upon diagnosis. Could this have been the answer? Why are we denying individuals this treatment when over time cases like this little boy can happen is beyond me.

I thank you for the opportunity to express my opinion. I am grateful you are bringing attention to various issues and advocating for individuals affected with autism.

Unknown said...

You raised a number of very legitimate, serious concerns Christine.

What struck me in the article was the frequency of the self injurious behavior - 109 self injury incidents in 1 hour sounds like extremely dangerous behavior to me.

In that context IF ECT worked, which I think requires confirmation in other case studies if they occur, then it should be kept in mind as a last resort, possibly life saving measure.

SM69 said...

Any issue of self injury behaviour should be treated foremost with full medical and biomedical investigations. Often the answers are much simpler and far less invasive than this. ECT might be seen as near equivalent to a pharmacological intervention, not targeting the cause but the symptoms. In case of SIB relating to pain- inflammation brain or gut, I doubt it will treat effectively the symptoms. Often there is the inaccurate perception that behavioral disturbances such as SIB are related to impaired brain function, when it actually is a pretty normal way to deal with problems when one has little mean of expression, is confused about source of problem and is not offered any better way to alleviate it.

I agree with your point Harold that SIB is serious and in no way something anyone could wish for or should not attempt to manage. This is the hardest thing I have ever been faced to; a child that self injure, bleeding, is covered with bruise and does not stop all day long is not something I am ever able to get comfortable with. I can get comfortable with autism, though I am of course aware of the limitation this can bring to individuals in many instances, but I cannot get comfortable with SIB.

Anonymous said...

I know a family who is using ECT for their son with autism. This has been a light at the end of a long tunnel for them. They have almost lost him due to his self-injurious behaviors. He has lived in a hospital setting for too long. Thanks to ECT coupled with other therapies, he has a chance to come home to his parents in the future. They have read all of the data and this is the only thing that has significantlly helped. I am looking forward to more research, but for many children with autism this seems promising.

Anonymous said...


I am the physician author of the article published in the European Journal of Child and Adolescent Psychiatry documenting the amazing reduction in self-injury for this young autistic boy who had exhausted 5 years of ABA and medication treatment, including 2 years in an inpatient setting.

Recently our work has come under criticism from anti-ECT activists and those who fear negative publicity. Some Internet site have posted much less thoughtful comments than yours. I found myself reviewing the Internet in an effort to see exactly what was out there, and was quite pleased to see that your site actually demonstrated interest in understanding how ECT might help some severely afflicted autistic children.

I would be happy to forward you a pdf copy of the entire article, or provide further information to your organization. The more education, the better! to help some of the more severely affected autistic kids.

Kindest regards,

Lee Wachtel

Anonymous said...

I am the sister of the child who received ECT for this case study. While I can understand critics and do have questions regarding the long term effects as well... all I can say is you have no idea how severe his SIB's were and how poor of a quality of life he had, if any.

If nothing was done I cannot imagine and do not want to imagine the life he would be leading now.

ECT was the first treatment that actually showed improvements in his behaviors which needed to be addressed in order for him to learn.

My parents were more involved in the decision making process, but I believe if you would read the full journal article you can get a better understanding of all the treatments he had tried first before beginning ECT.

I thank you for sharing your knowledge regarding alternative treatments.