For many -- if not most -- of us, the term electroconvulsive therapy or ECT brings to mind an upsetting illustration of the therapy in One Flew Over the Cuckoo's Nest. But for Amy S.F. Lutz, a mom of five whose 15-year-old son Jonah has autism and a history of frequent, unpredictable rages, ECT is a lifesaving treatment.
Where anti-psychotic drugs failed and may have led to frightening, possibly permanent side effects like dystonia, tardive dyskinesia, and neuroleptic malignant syndrome, ECT has proven both effective and without worrying side effects. Thrilled by the results, Amy wrote Each Day I Like It Better: Autism, ECT, and the Treatment of Our Most Impaired Children to raise awareness about the widely misunderstood therapy.
Amy recently talked to The Stir about what led her to turn to ECT for Jonah, why there's such a stigma around it -- especially for kids -- and what she advises other moms who feel it may be right for their child.
What are some of the therapies you tried with Jonah before turning to ECT?
There were about seven or eight years between Jonah being diagnosed at age 2 and when we began ECT at age 10, and I think we must've tried almost everything! We started a lot of alternative treatments. We did the gluten- and casein-free diet for four years, we did B-12 injections and vitamins. I spent 40 hours with Jonah in hyperbaric oxygen therapy. We tried everything, because, of course, you want something that's less invasive before you go down the medical route. None of that helped. Then we tried a lot of different medications. So he was on anti-psychotics and anti-depressants and anti-seizure medications. Virtually anything that's ever used to control aggression and self-injurious behavior in kids, we tried it. Jonah ended up spending almost a year at the Kennedy-Krieger Institute in Baltimore when he was 9, and he came home pretty stable on new meds that he was prescribed there, but within a year, he had fallen apart again and was bad as he had ever been. And that was when we decided to try ECT.
How did you begin to consider ECT?
Some of the kids that were at Kennedy-Krieger when Jonah was there were getting ECT, because they didn't respond to medications, so I didn't really have a bad feeling about ECT. I knew that it didn't look anything like it looks in One Flew Under the Cuckoo's Nest, so I knew it was done under general anesthesia with muscle relaxants, there's no thrashing like people often imagine. And it was never recommended for Jonah while he was there, because he responded initially so well to the new medication. ... Then, I was talking to Jonah's doctor about another admission, and she mentioned [another] patient's ECT. And then I said to her, 'Did you ever think Jonah would do well with ECT?' I was just excited to try something new. So I was just like, 'How do I get it? Just sign me up!' She couldn't think of any doctor in this region who would treat a patient as young as Jonah, so we had to go up [from Philadelphia] to New York City, to Mt. Sinai for the acute course.
What's Jonah's current regimen like?
A lot of people need to get maintenance ECT, and for kids like Jonah -- I know about two dozen now who are severely autistic and have very dangerous behaviors -- they can't go longer than two weeks without ECT. So Jonah goes every 9 or 10 days, depending on how the weekend falls. There's now someone locally who was willing to do it once Jonah responded so well to the acute course. So now we're kind of in maintenance and will be doing this for the foreseeable future. Who knows what will happen when Jonah is an adult? Maybe he'll outgrow the need, but it's unlikely, just because studies have shown that these sorts of aggressive, self-injurious behaviors are stable over time.
What does research show about kids being treated with ECT?
The research on kids -- I've not been able to find any study that shows any long-term cognitive or memory damage as a result of ECT. The study in the general population, the only concern that's been really validated is there can be some short-term memory loss around an acute course of ECT, so what patients are usually advised is that they may not remember much in the month or two surrounding the acute course of ECT. That's not to say that there aren't people who have reported, you know, decades of memory loss. It's very rare if that occurs. People are often groggy right after the ECT treatment, but generally within a few days, they're back.
When you first decided to go with ECT, what were initial reactions from family and friends like?
I never had one friend or family member express any apprehension or doubt. The people who are closest to us knew what we were going through, and they were rooting for us, and when things turned out so great, they were so happy. No one has said boo to me about it! They're just really thrilled. Everyone was really supportive.
Would you say there is more social acceptance for antipsychotic pharmaceutical drugs, even though they come with more complications than ECT? Why do you think that is?
There's a lot of stigma around ECT. It sounds scary to a lot of people. It's more of a pain in that you have to go to a hospital and be put under general anaesthesia, and no one is recommending that that's a great option to go under as frequently as Jonah has to go under. The flipside is letting him live with these dangerous behaviors where he would have to be in a really restrictive, residential environment. Some of these kids, instead of being very aggressive toward other people, are very self-injurious. ... I think that a lot of doctors and also a huge part of the public just don't have an accurate understanding in what's involved in ECT and how effective it is and how the side effects are pretty benign compared to some other forms of treatment, especially compared to leaving mental disease to run uncontrolled.
What were the benefits of ECT you saw with your son?
The ECT's effect was so dramatic. It was really black and white. Jonah does not have rages anymore. Ever. I mean, if he gets agitated -- and he does, like any kid -- he doesn't come after us at all. Before he was coming after us several times a day with this ferocity. And the ECT stops it, and that's what's amazing to me. For the first time in his life, he's changed schools from a more to less restrictive environment. He goes to a community-based school, so he's out in the community all day, working out at the gym, going to the supermarket, and then comparing his food and working with their work partners and constantly out and about, and he loves it -- instead of basically being under physical or chemical restraint.
What do you tell other moms who are interested in ECT for their child?
The first thing I usually [say] is ECT really works well in kids whose behaviors that are "automatic" or intrinsic and are not due to environmental factors. So there are some kids who have really aggressive behaviors, because they don't get what they want or they're at school and they have work they want to get out of. Those are environmentally-based behaviors that the kids do have control over and that don't really need a medical treatment. But kids like Jonah, they often have a neuropsychiatric diagnosis, like with bipolar, and a lot of kids in my book and other families, they are diagnosed with catatonic disorder. And ECT really works well with those sorts of behaviors. If they are interested in looking into it, EASI Foundation's site has resource guides, and one of those is for providers. Now, there aren't a ton [of providers interested in working with younger patients] because a lot of ECT providers aren't interested in getting blowback from treating young kids. It's also kind of a hassle [because] they can be difficult to treat at the beginning. ... I will also say that accessibility is a huge problem. There are five states that don't allow ECT in kids at all. And there are a lot of places where there are no ECT doctors who are willing to give ECT to kids.
How did you pay for the treatment?
Our insurance covers it almost completely, and it would be very expensive without it, because I think it bills for almost $1,200 a treatment, and, like I said, we go every 9 to 10 days, so that would be really difficult. Because ECT is a very recognized, medical procedure. An estimated 100,000 Americans get ECT every year, and insurance companies know it's extremely effective, and it works very quickly. I haven't known any families who have had a problem getting ECT covered.
What can be done to change how society thinks about this treatment?
Just increasing the flow of information would change a lot of people's minds. Most people just have an icky feeling about ECT that they get from our culture, but don't really know anyone who has had it or know anything about it directly. I think if those people saw Jonah's doctor go on the Today show with her before and after [ECT] videos of kids, you would basically change the minds of 75 percent of people who were watching. I think most people are rational, and if they saw the way ECT has drastically improved [kids'] quality of life and their family's quality of life, I think most people would be on board. These behaviors are so disruptive. It's hard to have any kind of life when you're constantly living in fear. THIS is autism. When people say they want to cure autism, this is what we're talking about. The public just doesn't know how bad it is for how many families.
Does Amy's story change your mind about ECT?
Image via Amy S.F. Lutz