I recently read a book called Carly’s Voice, written by Arthur Fleischmann. It’s about his struggle to connect with his autistic daughter, Carly. My mom saw the book online and thought I should read it.
I was ecstatic to read it because like many on the autism spectrum, Carly is non-verbal. Because of this, her family did not know how to communicate with her. Arthur shares many of the struggles he had attempting to comprehend her. He put her up for Applied Behavioral Analysis (ABA), in an effort to curb many of her autistic behaviors. I’ve heard very few positive things about ABA, mostly because it’s used by people who do not realize that behaviors that are considered stimming, like rocking back and forth or flapping arms, are actually just part of being autistic. He even admits that he installed a security system to curb her frequent wandering.
Then one day, a breakthrough happened. Through the therapy, Arthur discovered that Carly could communicate by writing or texting. Arthur says that he finally felt as though he was a part of her world. (Um actually, Arthur, you were part of her world before that, too)
This discovery made Carly a celebrity, thanks to her getting a Facebook page. She even appeared on the Ellen DeGeneres Show. What was once a quiet, enigmatic girl had slowly become a vibrant woman, eager to share her thoughts with anyone who would allow her time.
Sadly, recently things have taken a dark turn. Last year, Carly was given Electro-Convulsive Therapy (ECT), in the hopes of helping her cope with her Obsessive Compulsive Disorder, or OCD. OCD is often co-morbid with autism. ECT is a controversial “therapy” consisting of administering electric shocks when a subject is not exhibiting acceptable behavior. It is an outgrowth of ABA that is sadly still practiced today, despite the harm it puts patients in. It is most infamously practiced at the Judge Rotenberg Center,which is funded by Autism Speaks itself. Lydia Brown, who has a blog called Autistic Hoya, has written several articles about the horrible facility, in an effort to raise awareness so that it will be shut down. The Autism Advocacy Network (ASAN) has a four-part article on their site written by a survivor of the Center named Jennifer. I agree with Lydia Brown that this facility should be shut down. Because of this so-called therapy, all the work that unlocked Carly’s potential has now been undone. Last December, Carly broke the silence and posted to her Facebook page a status that was nearly unintelligible. The “therapy” had damaged the area of her brain associated with language. She is now unable to communicate, neither verbally nor non-verbally. People are now angry with her father, and with good reason. I’m not saying he deserves all this anger directed at him, but I can understand the anger. He continuously tells people on the page that everything is fine. No, Mr. Fleischmann, everything is NOT fine. She is crying for help, and it is all your fault. All in your efforts to make her “normal”. This is why ASAN’s motto is “Nothing About Us Without Us”. If you are going to help autistic people, you are supposed to listen to them, and NOT the way Autism Speaks pretends to.
Perhaps there is still hope. Let us all pray that she recovers from the torture she has received and does not retreat into the darkness. Humans need to communicate, either verbally or non-verbally. I want to hear her voice once more.
Aspie Catholic 
Reblogged this on Daven Anderson's Blog and commented:
We can’t make anyone “normal”, really, without diluting the individual they were born as, and born to be.
As a woman who has grown up with autism in her family and who’s given birth to 3 people with varying degrees of it, I often get smug about how much I know about autism. But I can safely say that this article was a wake-up for me and I’m so glad you posted it. No one in my family is non-verbal, but one (grown) son is continually pressured by family and friends alike to just “man up” and act normal. He is beautiful just the way he is. Yes, we should help him stretch his boundaries–he’s so intelligent and curious–but there’s a fine line between encouragement and disparagement.
Let them be who they are, not who you want them to be. I’ve had to learn that and I get impatient for others to learn it too. Thank you for writing this.
Reblogged this on All Aboard the Trainbow! and commented:
I hope this story will teach parents to reconsider their choice to use ABA for their children, and not to ever put ECT on the table. ABA is dangerous. Despite all of the scientific evidence that it “works,” all scientists involved in the research have failed to include one thing: the input from autistic adults who received the therapy as children. It is no wonder Carly’s OCD ended up so severe. A strict upbringing restricting her stims will for sure exacerbate anxiety. In other children, such as Issy Stapleton, there is no reason to believe that ABA cannot also make a child resentful and violent without knowing why.
Thanks! I’m following your blog now! You’ve got good stuff!
Always glad to have another reader of my blog 🙂
ECT (Electroconvulsive therapy) and the aversive shock “therapy” used at JRC are two COMPLETELY DIFFERENT things!
No they are not.
“ECT is a controversial “therapy” consisting of administering electric shocks when a subject is not exhibiting acceptable behavior. ” No…. it most certainly isn’t.
I’m afraid you are mistaken.
My research shows different. Are you someone who approves of this practice being used as “therapy”? I believe therapy should not harm those it is administered to.
Wow…. I’d be more than happy to see your research then. Please show me evidence that JRC uses ECT (Electroconvulsive therapy). In your last comment I’m not sure what I’m being asked since it appears you believe that ECT is the same as the torturous “shock therapy” used at JRC. Since you did not specify what “practice” you are actually referring to, I can’t answer that. If you could be more specific with your question, I’d be happy to reply.
“So Israel decided to develop his own, more powerful, pain machine. He invented the GED, or Graduated Electronic Decelerator. It is a basic electricity generator that puts out a 15 to 30 milliamp shock, lasting for two seconds. Later, Israel decided that an even more powerful machine was called for to treat the severest of cases, and designed the GED-4, which has three times the electrical charge of the basic GED.
These devices are not to be confused with ECT, or electroconvulsive therapy, where electricity is pulsed through the brain, often as a treatment for depression. Israel’s shocks are applied to the skin as a means of discouraging bad behaviour, rather than changing a person’s mental state.
Students are given shocks when they behave badly – they may be disruptive in class, say, or threaten staff. However, Israel insists, most of them make the connection between problem behaviour and pain fairly quickly, and stop acting up within weeks. He does concede that some on the autistic spectrum may need to keep the GED long term. For them, he says, the machine is just like wearing “glasses or hearing aids”.”
http://www.theguardian.com/society/2011/mar/12/electric-shock-school-matthew-israel
“What science backs up the use of electric shocks to the skin as an appropriate way of modifying behaviors? Not much, unless you’re a rodent. First, this “therapy” is not to be confused with electroconvulsive therapy which, although controversial, is administered to patients under general anesthesia and involves electric currents to the brain to induce seizures. ”
http://www.forbes.com/sites/emilywillingham/2013/03/08/autism-shock-therapy-is-torture-says-un-official/
“For years, the state of New York has been sending troubled kids to a notorious “school” in Massachusetts known as the Judge Rotenberg Center, where students who don’t follow the rules receive painful electric shocks. The “treatment” at the center has nothing to do with electroconvulsive therapy, where people with severe depression are induced into having seizures under anesthesia — it’s behavior modification for troubled children, and the Rotenberg Center is the only place in America that uses this approach.”
http://nymag.com/daily/intelligencer/2012/04/autistic-brooklyn-kid-shocked-as-treatment.html
“There is an important difference between contingent electric shock, the method that JRC uses, and another form of treatment known as electrostatic or electroconvulsive therapy (ECT). ECT is intended to be administered while the person receiving it is sedated, and is used to electrically alter brain waves through artificially inducing seizures. ECT is typically considered a treatment for depression. ECT also has a history of frequent involuntary and coercive use, which is also deeply ableist and abusive; however, there are people who voluntarily give their informed consent to receive ECT. The JRC does not gain consent from the people to whom they subject the GED device, which is much more analogous to a dog shock collar — staff press a button on a remote control, which then administers an extremely painful shock to the recipient.”
http://autistichoya.net/judge-rotenberg-center/
Thank you for those links. I can see you’re on my side of the issue.
It’s not about sides, it’s about accuracy. Do you plan to edit your blog post to correct your inaccuracies or let them stand? Or do you still believe JRC practices ECG?
You are really trying my patience. What does the JRC call their torture that they pass as therapy, then?
Hi,
There are a lot of myths about ECT out there so I want to give you some accurate non-biased information.
1. ECT is not part of the ABA model. This does not mean I think ABA is flawless.
2. ECT stands for Electro Convulsive Therapy. It is not the same thing as Electro Shock Therapy.
3. Electro Shock Therapy developed in the 20th century consisted of connecting an unsedated person’s brain to an electric current that would literally shock their brain and their entire body in an effort to end mental illness. It was not intended to be punitive. The key thing to remember is that there were very few psychiatric medications available at the time and EST was an attempt to cure very severe cases of depression and other psychiatric disorders.
4. ECT is a descendant of EST but it is has an entirely different approach and methodology. A patient is sedated with a general anesthetic and muscle relaxants, so they are not awake during the procedure. Patients under go rigorous medical testing including EKG, EEG, and MRI before beginning a course of ECT. During an ECT session predetermined small and intermittent doses of electric current that causes a small seizure in the brain. Patients are typically treated inpatient to start and then on an outpatient basis. Usually 10-15 sessions spaced out to prevent overload, instead of one big session. Memory issues are short term and only affect short term memory. Adverse cognitive effects are very rare. Success rate is very high for treating treatment resistant clinical depression. It’s quicker and longer lasting than medication.
5. I’m not sure where the information that Carly Felischmann was getting ECT to cure her OCD originated from but it sounds like misinformation or misunderstanding. ECT is mostly used for treatment resistant depression for actively suicidal patients who don’t respond to medications. Usually several medications are tried before ECT is considered. It is sometimes used for bipolar depression, catatonia, and schizophrenia but as far as I know is contraindicated for anxiety disorders. So, the OCD reason does not make sense.
6. While there have a few studies regarding OCD and ECT they were small and inconclusive. The FDA has not approved ECT for OCD so insurance is unlikely to cover it which means that if it is done it’s going to be out of pocket and very expensive. To give you an idea: my sibling had ECT for TRD/actively suicidal. Parents did not have mental health coverage. They are still paying off the 250 K bill. Thankfully, the have the means to do this. I don’t know about the Fleishmann’s income of course but that’s one of the things I imagine they’d have to weigh if they were getting ECT for something the FDA doesn’t even approve.
7. This story raises all kinds of questions really. Why ECT for something it’s not indicated for? Where did they go? Was it a reputable place? Were they misled into an experimental procedure without the facts? Or have the Fleishmann’s left out important details about Carly’s condition? She’s entitled to privacy of course. It’s not our business but if they are telling people that she got ECT for OCD then they probably should clarify how and why.
I will allow your reply to be seen only because I want to be unbiased. I admit I know very little about ABA and ECT. In fact, all I do know is in the articles I linked to in my post. Thank you for calmly stating your position. That’s the other reason I’m letting people see your reply.
“You are really trying my patience. What does the JRC call their torture that they pass as therapy, then?”
Sorry, I do not mean to try your patience. I’m not sure how I’m doing that, if you show me I’ll try very hard not to do it again.
If you read my reply with the links you thanked me for you will see:
1) “He invented the GED, or Graduated Electronic Decelerator. It is a basic electricity generator that puts out a 15 to 30 milliamp shock, lasting for two seconds. ” So Matthew Israel calls it “GED, or Graduated Electronic Decelerator”
2)”“What science backs up the use of electric shocks to the skin as an appropriate way of modifying behaviors?”, “the Judge Rotenberg Center, where students who don’t follow the rules receive painful electric shocks.” So, essentially what it is is “electric shocks to the skin”
Note that all 4 of those linked quotes make it clear that what the JRC is doing is not ECT.
Quote #1 “These devices are not to be confused with ECT, or electroconvulsive therapy,….”
Quote #2 “First, this “therapy” is not to be confused with electroconvulsive therapy …..”
Quote #3 “The “treatment” at the center has nothing to do with electroconvulsive therapy, ….”
Quote #4 “There is an important difference between contingent electric shock, the method that JRC uses, and another form of treatment known as electrostatic or electroconvulsive therapy (ECT). …”
I had ECT done to my brain, back between Jan.-Feb. of 1998. I had 17 in all. I don’t know where “starryblum” is getting his/her information from, but it is a crock. ECT does not cause just short term memory problems. It destroyed my life. It was forced on me, and anyone who shoots 3400 volts of electric current through anybody’s skull and brain should be shot, or better yet, do it to themselves.
I am in a catatonic state, talking in weird voices, can no longer do anything I use to enjoy. Like – love. I can’t love. I no longer exist. My abilities, including laundry, cooking, cleaning, brushing my (then) little girls hair,
praying daily, weekly mass, and playing piano, my home, garden, and every friendship and love I have cherished is wiped forever. I rock back and forth, drool at the mouth, and because ECT destroys brain MATTER . there is no regular sleep/wake cycle.
I no longer know my daughter, parents, siblings, or old friends. I try making new ones, and they are kind, but have families of their own. It is like a sledgehammer constantly plopping onto your skull. I cry constantly,
and I just can’t say enough that I lay and pray that God won’t let me and my grown daughter wake up. She and ALL family members and friends are victims, because they want their old Judy back.
I would really, really like to know just who “starryplum” is, if this person has had ECT? Or is a psychiatrist himself. Because this person is VERY wrong about just a few small amounts of electric current at a time so a person doesn’t experience overload? What are we, light sockets or something?
I had 17 ECT bilateral, from what my records show, at 200 volts each. 3400 volts of electricity shot through my skull! All total. I have little brain matter – it is like a slow and lingering death. I have broken teeth, permanent dents in my upper arms, and no personality.
I’m sorry, for my verbal post here, but “starryplum” – you are SO full of it!
judy
I’d like to know myself. I’m convinced she’s a plant!
I agree this is torture. Carly, like me, is Canadian, and I am shocked this torture method is allowed in my country. On the plus side, Carly is back typing, and recently has interviewed Channing Tatum. Her comic timing is perfect! I really admire how she has put up with so much ableism, yet still maintains a sense of humour.
I know! I saw that first episode! She and Tatum had great chemistry, which is important for a host.
Carly is back typing.
I’m aware of that.