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.