The Face of Autism
Tonya Parker Morrison
July 19, 2005
My son AJ is autistic.
I know what you're thinking right now - half are saying "Man, that sucks" because you know what it is and the other half are going "What the hell is that?".
Autism has been filtering into the mainstream media lately, with features in national magazines, on primetime news shows and even in popular series like The Dead Zone and CSI.
The DEAD ZONE on USA, starring the gorgeous and talented Anthony Michael Hall (yes, he was the geeky one in Pretty in Pink eons ago, but age did him many many favors) actually featured an autistic boy as a witness in this past Sunday's episode.
I watched it and while it was somewhat informative and thought out, it did not show the true face of autism any more than any of the other sources have. Why? Because autism has many faces and, like snowflakes, no two are alike.
While I LOVE the show and would have Tony's baby in a New York minute, the boy on the show was an extreme case - the stereotypical "sit in the corner, don't touch me, can't speak" kind of autism. A bit further along than, say, Rain Man, perhaps the most infamous onscreen portrayal of someone afflicted with autism.
Last season (I think), CSI featured a case in which Gil Grissom realized one of his witnesses, a very organized, repetitive young man who saw a friend die, was autistic. The young man was labeled a "freak" by many, but was actually just repetitive and orderly with no sense of humor and little understanding of common concepts. The character likely was supposed to have Asperger's Syndrome, which is an extremely high functioning form of the disorder. Somewhere between those two extremes is where most of these people struggle.
Autism has MANY faces and my son's is not the one portrayed in the media thus far. AJ, 9, can speak and read and the only thing he can't seem to grasp is how to clean his room, but I'm pretty sure that's something that all kids are afflicted with ;o) Yet he gets confused over simple concepts like "hand me the sock" although he's done it a thousand times before.
There is a well known, award winning author with autism who has made it her mission to help others afflicted. At the other end of the spectrum, there are children AND adults who will never be able to live on their own because they have no way of controlling many of the symptoms of autism that make it unsafe - lack of impulse control, inability to grasp consequences and general misunderstanding of simple tasks or words and phrases.
The span of autism is as different as say, physical disabilities. Some people have something wrong with their eyes or hands, some with their feet, some with their legs, etc. etc. There are some of my son's 3rd grade (going on fourth) here who cannot speak, sure, but there are a couple who not only speak, but are heads and shoulders more polite and articulate than many other kids of any age. They write stories, draw intricate and wonderfully creative pictures and zip along on the computer better than a lot of adults I know.
AJ's creativity seems to be limited to the walls, but at least I'm keeping Magic Eraser and like products in business. He does use the computer to play some Disney-related CD-Roms, look up his favorite stores or hotels online or his video wish list on Ebay. God help me if he learns how to bid.
In some sort of bitter, and yet slightly humorous irony, my son's major delay is in communication. I know, I'm a writer and interview people for a living, a journalistic mixture of psychology and writing skill, so how can my son not be able to talk someone's socks off or write a story? I create paintings for my friends as presents and yet my son can hardly contain himself long enough to color in a coloring book. I hate it and I wish I could trade with him, but I know that I can't. Apparently, the Big Man Upstairs has decided to give him to someone with the strengths he is lacking, which of course is something I should be grateful for, not embittered.
Don't get me wrong, AJ makes his point known and does very well in school, with special instruction added to normal classes of course. He communicates, writes and reads like a kid who is a few years younger than him. Much of his spoken conversation is simply relaying his needs - "bathroom please," "swim today" or "school next month." Physically, there isn't a thing in the world wrong with him. Sometimes, his physical ability ceases to blend well with the neurological aspects of autism and we've had to save his life quite a few times.
You see, impulse control (something that was shown accurately in the Dead Zone episode) is kinda non existent in people (notice I didn't say kids) with autism. With medication and behavioral therapy in school, my son has stopped wanting to run out into traffic, cross our street and fly through the neighbors' homes (people we DON'T know by the way) to find Disney videos and leap into open bodies of water when he can hardly swim. I fought it for years, mind you, but he has to take medications to keep him alive the way I have to take thyroid medicine to keep me alive and functioning. My thyroid gland isn't normal, his brain isn't normal. We can meditate, massage, cajole and talk all we want and it won't change a thing.
When people talk to me, I look at them, smile and engage in conversation (most of the time anyway). When they talk to AJ, he avoids eye contact, sometimes puts his hands over his ears (another little accuracy from the Dead Zone episode) and never actually acknowledges the conversation directed at him. When we are in a crowd, I mingle and make friends. When AJ is in a crowd, he looks for the shortest route out of the crowd, puts his hands over his ears and says "NO" very bluntly. Yeah, carnivals are a nightmare.
We are night and day, and yet the same person. He looks like me. His sister, who paints and writes and socializes just like me, is a female version of her father. AJ smiles like me. It's just that the world rarely smiles back at him and that makes me want to throttle total and complete strangers.
When we're shopping, people stare when he bites his shirt out of excitement or jumps up and down saying "Oscar Meyer weiners" because he's seen the commercial 100 times and it's familiar. I've just NOW come to the point where I don't get offended when they gawk or want to run my shopping cart into them full force, smack them around a bit and yell "He's a GREAT kid damn you!"
I once saw a forensics show on TLC that featured a woman who was murdered by a sheriff's deputy in California. When her father came to the scene and another deputy walked up to him with his head low, the father knew that she had been found dead. His eyes tearing up, this big, burly man simply said "I wish you could have known her."
I cried for an hour.
That's what I wish, that everyone could know AJ before passing judgement on him - or me or his sister, or anyone I love. You look at him and see a healthy kid with no obvious signs of disability whatsoever. I look at a kid and see what is inside, the mangled wires that must form part of his brain and yet he still manages to be the happiest, most huggy and lovable person I know. He doesn't care about politics, money, religion or any of the other topics that drive us into heated debates and make our lives either more enriching or more miserable. He cares about feelings - his, yours, ours.
A friend of mine joked one time and said that AJ could start a cult because he's that charming without even trying. He loves because he LOVES, no other reason. He has no ulterior motive whatsoever and is as happy with a pack of gum and jumping on our trampoline or swinging as other kids would be going to Disneyland. He takes the kind of joy in a Disney video or big screen movie that other kids reserve for receiving $100 from grandma at Christmas.
Few people know him, sure, but those of us who do happily call ourselves members of the Cult of AJ. It's an inside joke, but it's true.
Even with all of his flaws, he is human and a great little one at that. At least 75% of us are given everything completely normal in which to make this life a better one for ourselves and others as well and we manage to squander it a lot of the time. He was dealt a raw deal for whatever reason (they have no idea to this day what causes it) and manages to make the best of it 99% of the time.
We worry about flaws that others see and there he his, dealing with flaws no one can see and only he can feel 100%. If I could, I would trade places with him in an instant so that he can eventually know the freedom of driving a car, the bliss of finding true love and the pride of graduating from college. He may never know any of those feelings, but he knows love. Even better, he teaches it to every single person he meets.
So, everytime our AJ runs through the living room naked in front of my daughter's slumber party attendees because he sees no difference in the sexes, my daughter Alexa laughs. The girls who are truly her friends laugh with her. The rest may never come back again.
When AJ starts crying for apparently no reason in the middle of a movie, we don't panic. We take him out into the hallway, try to calm him down and "redirect" by focusing his attention on getting more popcorn, etc. We want him to have as normal life as he possibly can and that includes not walking out on someone or something every time he gets agitated. It's never easy and sometimes, frankly, it's downright grueling, but ultimately, I think the extra work is more than worthwhile.
These will not be my last words on our "situation" as some would call it. There is too much to explain and too much for others' to learn. We discover something brand new everyday about autism and I think it's irresponsible not to pass that knowledge on.
If anyone read this and has questions, please let me know. It's become one of my great missions in life to make others understand autism. Besides, statistics everywhere show that with the rate it's being diagnosed now, if you don't know someone with it, you will. We put millions into diseases that kill such as cancer and heart disease, but a cure for autism would mean curing something that, for many, makes them suffer in silence.
For more information on autism or to donate ANYthing to the cause - your time, $1, your voice - go to www.autism.org.
I know what you're thinking right now - half are saying "Man, that sucks" because you know what it is and the other half are going "What the hell is that?".
Autism has been filtering into the mainstream media lately, with features in national magazines, on primetime news shows and even in popular series like The Dead Zone and CSI.
The DEAD ZONE on USA, starring the gorgeous and talented Anthony Michael Hall (yes, he was the geeky one in Pretty in Pink eons ago, but age did him many many favors) actually featured an autistic boy as a witness in this past Sunday's episode.
I watched it and while it was somewhat informative and thought out, it did not show the true face of autism any more than any of the other sources have. Why? Because autism has many faces and, like snowflakes, no two are alike.
While I LOVE the show and would have Tony's baby in a New York minute, the boy on the show was an extreme case - the stereotypical "sit in the corner, don't touch me, can't speak" kind of autism. A bit further along than, say, Rain Man, perhaps the most infamous onscreen portrayal of someone afflicted with autism.
Last season (I think), CSI featured a case in which Gil Grissom realized one of his witnesses, a very organized, repetitive young man who saw a friend die, was autistic. The young man was labeled a "freak" by many, but was actually just repetitive and orderly with no sense of humor and little understanding of common concepts. The character likely was supposed to have Asperger's Syndrome, which is an extremely high functioning form of the disorder. Somewhere between those two extremes is where most of these people struggle.
Autism has MANY faces and my son's is not the one portrayed in the media thus far. AJ, 9, can speak and read and the only thing he can't seem to grasp is how to clean his room, but I'm pretty sure that's something that all kids are afflicted with ;o) Yet he gets confused over simple concepts like "hand me the sock" although he's done it a thousand times before.
There is a well known, award winning author with autism who has made it her mission to help others afflicted. At the other end of the spectrum, there are children AND adults who will never be able to live on their own because they have no way of controlling many of the symptoms of autism that make it unsafe - lack of impulse control, inability to grasp consequences and general misunderstanding of simple tasks or words and phrases.
The span of autism is as different as say, physical disabilities. Some people have something wrong with their eyes or hands, some with their feet, some with their legs, etc. etc. There are some of my son's 3rd grade (going on fourth) here who cannot speak, sure, but there are a couple who not only speak, but are heads and shoulders more polite and articulate than many other kids of any age. They write stories, draw intricate and wonderfully creative pictures and zip along on the computer better than a lot of adults I know.
AJ's creativity seems to be limited to the walls, but at least I'm keeping Magic Eraser and like products in business. He does use the computer to play some Disney-related CD-Roms, look up his favorite stores or hotels online or his video wish list on Ebay. God help me if he learns how to bid.
In some sort of bitter, and yet slightly humorous irony, my son's major delay is in communication. I know, I'm a writer and interview people for a living, a journalistic mixture of psychology and writing skill, so how can my son not be able to talk someone's socks off or write a story? I create paintings for my friends as presents and yet my son can hardly contain himself long enough to color in a coloring book. I hate it and I wish I could trade with him, but I know that I can't. Apparently, the Big Man Upstairs has decided to give him to someone with the strengths he is lacking, which of course is something I should be grateful for, not embittered.
Don't get me wrong, AJ makes his point known and does very well in school, with special instruction added to normal classes of course. He communicates, writes and reads like a kid who is a few years younger than him. Much of his spoken conversation is simply relaying his needs - "bathroom please," "swim today" or "school next month." Physically, there isn't a thing in the world wrong with him. Sometimes, his physical ability ceases to blend well with the neurological aspects of autism and we've had to save his life quite a few times.
You see, impulse control (something that was shown accurately in the Dead Zone episode) is kinda non existent in people (notice I didn't say kids) with autism. With medication and behavioral therapy in school, my son has stopped wanting to run out into traffic, cross our street and fly through the neighbors' homes (people we DON'T know by the way) to find Disney videos and leap into open bodies of water when he can hardly swim. I fought it for years, mind you, but he has to take medications to keep him alive the way I have to take thyroid medicine to keep me alive and functioning. My thyroid gland isn't normal, his brain isn't normal. We can meditate, massage, cajole and talk all we want and it won't change a thing.
When people talk to me, I look at them, smile and engage in conversation (most of the time anyway). When they talk to AJ, he avoids eye contact, sometimes puts his hands over his ears (another little accuracy from the Dead Zone episode) and never actually acknowledges the conversation directed at him. When we are in a crowd, I mingle and make friends. When AJ is in a crowd, he looks for the shortest route out of the crowd, puts his hands over his ears and says "NO" very bluntly. Yeah, carnivals are a nightmare.
We are night and day, and yet the same person. He looks like me. His sister, who paints and writes and socializes just like me, is a female version of her father. AJ smiles like me. It's just that the world rarely smiles back at him and that makes me want to throttle total and complete strangers.
When we're shopping, people stare when he bites his shirt out of excitement or jumps up and down saying "Oscar Meyer weiners" because he's seen the commercial 100 times and it's familiar. I've just NOW come to the point where I don't get offended when they gawk or want to run my shopping cart into them full force, smack them around a bit and yell "He's a GREAT kid damn you!"
I once saw a forensics show on TLC that featured a woman who was murdered by a sheriff's deputy in California. When her father came to the scene and another deputy walked up to him with his head low, the father knew that she had been found dead. His eyes tearing up, this big, burly man simply said "I wish you could have known her."
I cried for an hour.
That's what I wish, that everyone could know AJ before passing judgement on him - or me or his sister, or anyone I love. You look at him and see a healthy kid with no obvious signs of disability whatsoever. I look at a kid and see what is inside, the mangled wires that must form part of his brain and yet he still manages to be the happiest, most huggy and lovable person I know. He doesn't care about politics, money, religion or any of the other topics that drive us into heated debates and make our lives either more enriching or more miserable. He cares about feelings - his, yours, ours.
A friend of mine joked one time and said that AJ could start a cult because he's that charming without even trying. He loves because he LOVES, no other reason. He has no ulterior motive whatsoever and is as happy with a pack of gum and jumping on our trampoline or swinging as other kids would be going to Disneyland. He takes the kind of joy in a Disney video or big screen movie that other kids reserve for receiving $100 from grandma at Christmas.
Few people know him, sure, but those of us who do happily call ourselves members of the Cult of AJ. It's an inside joke, but it's true.
Even with all of his flaws, he is human and a great little one at that. At least 75% of us are given everything completely normal in which to make this life a better one for ourselves and others as well and we manage to squander it a lot of the time. He was dealt a raw deal for whatever reason (they have no idea to this day what causes it) and manages to make the best of it 99% of the time.
We worry about flaws that others see and there he his, dealing with flaws no one can see and only he can feel 100%. If I could, I would trade places with him in an instant so that he can eventually know the freedom of driving a car, the bliss of finding true love and the pride of graduating from college. He may never know any of those feelings, but he knows love. Even better, he teaches it to every single person he meets.
So, everytime our AJ runs through the living room naked in front of my daughter's slumber party attendees because he sees no difference in the sexes, my daughter Alexa laughs. The girls who are truly her friends laugh with her. The rest may never come back again.
When AJ starts crying for apparently no reason in the middle of a movie, we don't panic. We take him out into the hallway, try to calm him down and "redirect" by focusing his attention on getting more popcorn, etc. We want him to have as normal life as he possibly can and that includes not walking out on someone or something every time he gets agitated. It's never easy and sometimes, frankly, it's downright grueling, but ultimately, I think the extra work is more than worthwhile.
These will not be my last words on our "situation" as some would call it. There is too much to explain and too much for others' to learn. We discover something brand new everyday about autism and I think it's irresponsible not to pass that knowledge on.
If anyone read this and has questions, please let me know. It's become one of my great missions in life to make others understand autism. Besides, statistics everywhere show that with the rate it's being diagnosed now, if you don't know someone with it, you will. We put millions into diseases that kill such as cancer and heart disease, but a cure for autism would mean curing something that, for many, makes them suffer in silence.
For more information on autism or to donate ANYthing to the cause - your time, $1, your voice - go to www.autism.org.
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