One case of autism unveiled
A new book, Carly's Voice, gives an inside look at what it is like to live with autism from the parent who loves and worries and copes, and from the inside of a non-verbal child who broke through into communication through a computer keyboard, to the utter surprise of those who worked with her.
I had seen two segments on ABC News about this child, it was indeed the same person--I checked when it caught my eye at the library. In a Helen Keller-like moment, she grabbed a computer keyboard and hit keys, one jab at a time, to say * help *. Motor control is so difficult for her that she can only use one outstretched pointer finger, wavering, to stab at the keys. Still, she now writes pages.
The family lives in Toronto, and they began using applied behavioral analysis (ABA) therapy when she was four. She had already been through trial and error runs regarding diet sensitivities, communication therapy, and she was enrolled in a private school program. Their basement became a specialized therapy room, and Carly's abilities and dysfunctions were cataloged and broken down into component parts with mind-numbing detail. Her parents were already exhausted way before this began.
One of the things that the therapists eventually did was set up a binder with pictures of objects in it so that she could point to what she needed. The lucky corollary was that each picture was labeled with a word (so that they could all be uniform in saying what a thing was), and she visually took in the words without understanding what a "word" was-- but the day that she was sick and knew that they would insist that she use the speaking program they were trying to teach her, she grabbed the keyboard in desperation and typed: help teeth hurt. (She was trying not to throw up, acid was rising into her mouth, and she didn't know 'mouth'.) She was ten years old.
This changed everything, as the next weeks and months progressed. Her father writes about being able to talk to her, via emails, for the first time in her/his life. She alternates with him in the chapters of this book, and each of them takes a recap at the end.
The daughter they didn't believe understood anything around her was cognizant of almost everything. In fact, it turned out that her hearing is particularly acute, and when they were in the next room, through an open door at a distance, sharing their exhaustion and their frustration, she heard every word.
Once she could express ideas with words, she proved to have all the normal feelings of any young girl. She liked boys and wanted to flirt. She knew that some kids avoided her. She told her therapists how to help her control her symptoms in stressful situations. She told her parents what is was like to be inside this body which she could not control.
She describes the sensory overload that is normal life--faces are too hard to look at because they are overwhelming, her brain "takes a thousand pictures a minute" compared to some inert object. Self-stimulating patterns (rocking, slapping, noises, bouncing, and the like) are defenses against being drowned in all the messages hurtling at her brain from sight and sound and smell. The things we all filter out, she had to teach herself to filter, to be able to concentrate better on people's words. When she is overwhelmed she can't make her typing work. She wanted them to know eventually that sometimes a repetitive action they were trying to curtail might in fact be her valiant effort to minimize her disruptive behaviors, such as when she would hit her hand, she was not being self-destructive but instead was trying to hold it down to that small 'stim' because the impetus of her body was to squawk, rock, and flail her arms, and she knew she shouldn't do that. There was a normal mind locked up in a rebellious body under the influence of a totally misfiring brain.
One occasion that stays with me was the desire to go with her family to the movies. That's a very normal teenage activity. She tells her therapist--and she was very fortunate to have a couple of them consistently over a period of years--that if she flaps her hand on his arm, that will be the signal that she needs to go out in the lobby and walk to calm down. They had to do that once, and he got her through the rest of the time by rewarding her with one popcorn kernel at a time as she stayed quiet in her seat. The movie and the popcorn bucket ran out about the same time. She felt a huge sense of accomplishment.
It is just proof that we don't know what goes on inside of someone else. She says that when she was five or six she first realized that other people could not tell what she was saying, because her mind was giving them an answer--this was when the three children (an older brother and her fraternal twin sister) were being asked what they wanted for lunch, she was telling the nanny--she thought--what she wanted along with the other two, but they got their requests and she didn't. She in fact was ignored. Over time she saw that other people could readily do all sorts of things that she couldn't manage. The ability to communicate opened up relationships with her family and therapists and eventually won her a place in a regular school.
She had a voice at last, and it transformed her world. Reading this story might transform ours. So much, unseen, was actually 'in there.' How much we might miss, never seeing, in what others can offer the world.
I had seen two segments on ABC News about this child, it was indeed the same person--I checked when it caught my eye at the library. In a Helen Keller-like moment, she grabbed a computer keyboard and hit keys, one jab at a time, to say * help *. Motor control is so difficult for her that she can only use one outstretched pointer finger, wavering, to stab at the keys. Still, she now writes pages.
The family lives in Toronto, and they began using applied behavioral analysis (ABA) therapy when she was four. She had already been through trial and error runs regarding diet sensitivities, communication therapy, and she was enrolled in a private school program. Their basement became a specialized therapy room, and Carly's abilities and dysfunctions were cataloged and broken down into component parts with mind-numbing detail. Her parents were already exhausted way before this began.
One of the things that the therapists eventually did was set up a binder with pictures of objects in it so that she could point to what she needed. The lucky corollary was that each picture was labeled with a word (so that they could all be uniform in saying what a thing was), and she visually took in the words without understanding what a "word" was-- but the day that she was sick and knew that they would insist that she use the speaking program they were trying to teach her, she grabbed the keyboard in desperation and typed: help teeth hurt. (She was trying not to throw up, acid was rising into her mouth, and she didn't know 'mouth'.) She was ten years old.
This changed everything, as the next weeks and months progressed. Her father writes about being able to talk to her, via emails, for the first time in her/his life. She alternates with him in the chapters of this book, and each of them takes a recap at the end.
The daughter they didn't believe understood anything around her was cognizant of almost everything. In fact, it turned out that her hearing is particularly acute, and when they were in the next room, through an open door at a distance, sharing their exhaustion and their frustration, she heard every word.
Once she could express ideas with words, she proved to have all the normal feelings of any young girl. She liked boys and wanted to flirt. She knew that some kids avoided her. She told her therapists how to help her control her symptoms in stressful situations. She told her parents what is was like to be inside this body which she could not control.
She describes the sensory overload that is normal life--faces are too hard to look at because they are overwhelming, her brain "takes a thousand pictures a minute" compared to some inert object. Self-stimulating patterns (rocking, slapping, noises, bouncing, and the like) are defenses against being drowned in all the messages hurtling at her brain from sight and sound and smell. The things we all filter out, she had to teach herself to filter, to be able to concentrate better on people's words. When she is overwhelmed she can't make her typing work. She wanted them to know eventually that sometimes a repetitive action they were trying to curtail might in fact be her valiant effort to minimize her disruptive behaviors, such as when she would hit her hand, she was not being self-destructive but instead was trying to hold it down to that small 'stim' because the impetus of her body was to squawk, rock, and flail her arms, and she knew she shouldn't do that. There was a normal mind locked up in a rebellious body under the influence of a totally misfiring brain.
One occasion that stays with me was the desire to go with her family to the movies. That's a very normal teenage activity. She tells her therapist--and she was very fortunate to have a couple of them consistently over a period of years--that if she flaps her hand on his arm, that will be the signal that she needs to go out in the lobby and walk to calm down. They had to do that once, and he got her through the rest of the time by rewarding her with one popcorn kernel at a time as she stayed quiet in her seat. The movie and the popcorn bucket ran out about the same time. She felt a huge sense of accomplishment.
It is just proof that we don't know what goes on inside of someone else. She says that when she was five or six she first realized that other people could not tell what she was saying, because her mind was giving them an answer--this was when the three children (an older brother and her fraternal twin sister) were being asked what they wanted for lunch, she was telling the nanny--she thought--what she wanted along with the other two, but they got their requests and she didn't. She in fact was ignored. Over time she saw that other people could readily do all sorts of things that she couldn't manage. The ability to communicate opened up relationships with her family and therapists and eventually won her a place in a regular school.
She had a voice at last, and it transformed her world. Reading this story might transform ours. So much, unseen, was actually 'in there.' How much we might miss, never seeing, in what others can offer the world.
I bought a copy of "There's A Boy In There" years ago, it, too, written by an autistic and his mom. I loaned it around at church and it eventually never came back to me--we had a severely autistic young man in the ward and people wanted badly to know how the world looked from his point of view.
ReplyDeleteWe all have so much to offer. I am so glad that family got that breakthrough and all that help.
This comment has been removed by the author.
ReplyDeleteI went to the library catalog and looked that up--it's actually titled, "There's a Boy in HERE," easy mistake but it took Amazon's listings to identify it, the library was too literal. I will have to read it. (The authors' last name is Barron.)
ReplyDeleteYears ago, I read a book called "Son-Rise: a miracle of love" about a family who created their own way, before any therapies existed, before anyone credible believed there were any possibilities, and they brought their child to normal function and interaction. Maybe I can write about that later.
Hmm, I didn't know that my deletion would show. I just wanted to add the author because I had hit post and went woops--I couldn't edit so I copied it and added that. Live and learn, lol.
ReplyDelete