The myth of the living dead autistic child
On her blog, http://www.autismvox.com/ Christina Chew quoted the following statement from the May 2 Minnesota Spokesman-Reporter:
“Parenting a child with autism, in many ways, is like parenting a child who is alive but dead at the same time,” she says. “The body is there, but the senses are gone. It’s a loss.
“But Tajh is my heart; he is not just an autistic child, he is my world,” Cherry adds, “and he is the strongest person next to my grandma that I know. Not many people can understand what it would feel like to have a need but not be able to say what it is, every day. This is what children with autism experience. It’s like being thirsty, and even though you feel it, you can’t describe your intense thirst. Imagine having to experience that every day of your life.”
I find that passage very troubling. It implies a fundamental lack of understanding on the part of a parent, which is, to say the least, a very dangerous situation for a small child.
I agree that, to the casual observer, autistic people can seem dead in some ways. I myself am an Aspergian, toward the more functional end of the spectrum, and I was quite flat and emotionless as a child. I frequently declined to respond to others, and existed in my own world.
As a grownup, I can understand that it would have been frustrating, trying to interact with me. But here’s the thing . . . if not for the efforts of intelligent grownups who drew me out and caused me to engage with society, I might well be locked away somewhere today, out of touch with the world.
When I was little, there were people who looked at me and said, “No potential in that one,” and moved on. I don’t owe those people a thing. There were others who looked at me and said, “There is an exceptional child in there . . .” and those are the ones to whom I will always owe a debt of gratitude.
I was a child who might have been described the same way 45 years ago. Indeed, I probably was; I just don’t remember all the bad things people said about me. Today, I’m a successful grownup whose book – Look Me in the Eye - on growing up Aspergian will be in bookstores everywhere in just five more months.
Allow me to share some thoughts from my own Aspergian childhood experience. I don’t purport to speak for all autistic people, only for myself. But my thoughts may still be worth considering the next time you observe a “living dead” autistic person:
I am not “alive but dead.” I am fully aware of what’s going on around me, in fact, I am more aware of some things that ordinary people. I’m very quick to pick up very subtle things. As a misfit, I am well aware that I must always be on my toes – a jump ahead of the others. I just don’t always display visible reactions to things I see I see, smell, or hear.
The idea that “the body is there but the senses are gone” is just wrong. I have always been in full possession of my senses. As a child, my senses of hearing, smell, and taste were considerably sharper than those of my parents and most others around me. And my eyesight was at least average.
The words that followed those in the quote, if applied to me, would make me feel like a stuffed animal. I would not like them. Not one little bit.
And the final passage: “It’s like being thirsty, and even though you feel it, you can’t describe your intense thirst.” People might have said that about me as a child, but time would prove them wrong. People today say my ability to express my thoughts and feelings in words is extraordinary for anyone – autistic or otherwise. Folks who can’t describe their thirst don’t generally grow up to see their books published around the world, as I have. Be careful jumping to conclusion about children – we don’t always grow up the way you think, and we might have attributes you yourself are not sharp or observant enough to see.
As you can probably discern, I’m not left feeling very good about the parent in that article. If I were that person, I would be very concerned those words would come back to haunt me later.
Thanks to Christina Chew for bringing the article to my attention.
“Parenting a child with autism, in many ways, is like parenting a child who is alive but dead at the same time,” she says. “The body is there, but the senses are gone. It’s a loss.
“But Tajh is my heart; he is not just an autistic child, he is my world,” Cherry adds, “and he is the strongest person next to my grandma that I know. Not many people can understand what it would feel like to have a need but not be able to say what it is, every day. This is what children with autism experience. It’s like being thirsty, and even though you feel it, you can’t describe your intense thirst. Imagine having to experience that every day of your life.”
I find that passage very troubling. It implies a fundamental lack of understanding on the part of a parent, which is, to say the least, a very dangerous situation for a small child.
I agree that, to the casual observer, autistic people can seem dead in some ways. I myself am an Aspergian, toward the more functional end of the spectrum, and I was quite flat and emotionless as a child. I frequently declined to respond to others, and existed in my own world.
As a grownup, I can understand that it would have been frustrating, trying to interact with me. But here’s the thing . . . if not for the efforts of intelligent grownups who drew me out and caused me to engage with society, I might well be locked away somewhere today, out of touch with the world.
When I was little, there were people who looked at me and said, “No potential in that one,” and moved on. I don’t owe those people a thing. There were others who looked at me and said, “There is an exceptional child in there . . .” and those are the ones to whom I will always owe a debt of gratitude.
I was a child who might have been described the same way 45 years ago. Indeed, I probably was; I just don’t remember all the bad things people said about me. Today, I’m a successful grownup whose book – Look Me in the Eye - on growing up Aspergian will be in bookstores everywhere in just five more months.
Allow me to share some thoughts from my own Aspergian childhood experience. I don’t purport to speak for all autistic people, only for myself. But my thoughts may still be worth considering the next time you observe a “living dead” autistic person:
I am not “alive but dead.” I am fully aware of what’s going on around me, in fact, I am more aware of some things that ordinary people. I’m very quick to pick up very subtle things. As a misfit, I am well aware that I must always be on my toes – a jump ahead of the others. I just don’t always display visible reactions to things I see I see, smell, or hear.
The idea that “the body is there but the senses are gone” is just wrong. I have always been in full possession of my senses. As a child, my senses of hearing, smell, and taste were considerably sharper than those of my parents and most others around me. And my eyesight was at least average.
The words that followed those in the quote, if applied to me, would make me feel like a stuffed animal. I would not like them. Not one little bit.
And the final passage: “It’s like being thirsty, and even though you feel it, you can’t describe your intense thirst.” People might have said that about me as a child, but time would prove them wrong. People today say my ability to express my thoughts and feelings in words is extraordinary for anyone – autistic or otherwise. Folks who can’t describe their thirst don’t generally grow up to see their books published around the world, as I have. Be careful jumping to conclusion about children – we don’t always grow up the way you think, and we might have attributes you yourself are not sharp or observant enough to see.
As you can probably discern, I’m not left feeling very good about the parent in that article. If I were that person, I would be very concerned those words would come back to haunt me later.
Thanks to Christina Chew for bringing the article to my attention.
Comments
Through out the book thus far, all I kept saying to myself is that the whole social etiquette thing is a bunch of crap. John had a difficult time growing up NOT becuase he was different in a damaged way, but becuase people couldn't understand, communicate and see in the way John did. So are we normal because we have our unwritten rules of social etiquette and follow them like drones? Or are more disadvantaged becuase we take everything personally and need our feelings protected in the guise of social etiquette? My basic thought is that anyone different enough from us to be discerned is automatically labeled damaged or 'not normal'. What if it turns out WE are the 'efect' that has populated out of control?
Again, I recognize that with everything there is a spectrum of autism and A S. Not everyone is like John.. just like not every non-autistic person gets his points on life success and rises to the top of the social ladder. This is for conversations sake.
God has given each of us a gift. Use it in the best way you can. (Not great grammar, but a good thought?) LOL
But you're right. Though caretakers may feel tired, feeling 'dead' is not an option for us. Our worse emotions can be useful. The anger can be fueled into being an advocate, the disappointment can help find new ways to communicate clearly to him or her, and the tough times can help us become grateful for all the small things that do go right. And feeling dead is useless because these children are very much alive.
In my experience, Aspergian's are intensely aware of not fitting in. They are aware to a point of anxiety, pain, depression and not fitting in. They never feel dead. They are engaged in the things that they like best. Some, like you, have found niches to do well in. And boy, count your blessings. You are so lucky.
Anyway, I wanted to tell you how valuable your voice is in the overall discussion about not only Asperger's, but for the others who are mentally challenged in different ways.
Be cool, keep going.
Sorry. Back to work, now.
As an educator i felt much dissatisfaction with predetermined ideas of what students were capable of.
I preferred to think that a student's life was one of possibilities rather than limitations.