Thursday, May 3, 2007

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.

9 comments:

Anonymous said...

I'm so glad that I found your blog and signed up for the feeds! I'm a fan of your brother's books and can't wait for yours. I have a 16 year old Aspie son who has his own special talents (not mechanical like yours).

John Elder Robison said...

Well, welcome to my blog, wherever you are.

Matty said...

I have some crazy ideas that I want some discussion on. After reading some parts of your book, (yes, I have an advanced copy and I STILL intend on buying coppies for family and friends this September) I have a thought. You mention of Autism and your Aspergian nature as 'defect' several times. Don't we all as a world society consider anyone outside our 'normal' range of reference and behavior to Abby - normal? (to steal from Young Frankenstein) What if Asbergers is not a defect but an evolution? Any evolution has it's ups and downs, too much and too little. I could probably make a respectable argument that people at John's level of A S are (and I hate to generalize like this but it's for the conversations sake) a better version of 'normal' people. On average... smarter, very intuitive, relies more on expirimental data then emotion, says what he means, very methodical, and from my view, a very considerate person.

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.

Joni said...

I appreciate this post immensely. It is too easy to over-generalize when we refer to those who have some type of "difference". Just as every "normal" person is not the same as all other "normal" people, not every person with A.S. is the same as the next person you'll meet with A.S.

God has given each of us a gift. Use it in the best way you can. (Not great grammar, but a good thought?) LOL

Kanani said...

It's very difficult to articulate feelings sometimes. Often, people place their own feelings onto others, which in this case, perhaps the person has done. Maybe the caretaker feels "alive but dead," which would be more understandable than fixing those emotions onto an unwitting child.

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.

Kanani said...

...I meant... They are aware to the point of anxiety, pain, depression, and acting out in unsociable ways.

Sorry. Back to work, now.

ORION said...

What a beautiful post. I think it becomes problematic when adults or "experts" attempt to describe another's condition.
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.

kyra said...

i find that parent's comments very disturbing. my god. i would NEVER assume that my child is like the living dead. i have always had the strong impression that my son is aware of EVERYTHING. i know i can't speak for anyone--him, any other person with aspergers, but my thinking is that those wtih ASD feel, sense, and take in MORE than the 'NT' person.

Tanja Guven said...

Christina Chew is being a hateful twit and making things worse in ways that are completely unnecessary. It is true that we may appear a bit 'funny' to those who aren't used to it--I have quite a few pictures of myself that have a distinctly post-mortem look to them, but it is only a look, and we have thoughts and feelings and desires just as anyone else does. It is articles written by people like Christina Chew that make me want to run to the hills for my own safety, actually. It is easy to kill something that you don't think is really alive, after all.