Bitterness and Truth
by Christina Deanne
When my son was in kindergarten, he was diagnosed with Asperger's syndrome. An autism specialist was called in through the school, she performed the standard ASDS test and drew her conclusion as a result.
My husband and I knew that Mark was special. He read when he was three years old. He could tell time at age 2 ½. He knew all the shapes in his Tupperware shape sorter, including “trapezoid.” When he was four, he read the words “drive thru pharmacy” at our local drug store. But something was off.
I struggled with the idea that something was “wrong” and that he was having meltdowns at school. I had to apply myself to get him to play with other children. It did not come naturally. I called and arranged and called and arranged. I read articles on how to help your child make friends. When I could bear it, I read articles on Asperger's and autism. And I did this all without internet and very little support.
At the time of his diagnosis, I had three children five and under. I was overwhelmed and under supported. When the kids were in bed, I cried in my kitchen and had it out with the Lord. I screamed silently in accusation and alternately asked Him to help me. I felt myself slipping away and I couldn't. I had two other small children who needed me.
I remember standing in my kitchen and I told myself, “I will be angry. I can hang on to that. I will be bitter.”
Hindsight is always 20/20, but at the time, I felt I could only cope and think clearly if I was angry. And I did. Anger helped me live and walk and shop and do laundry and read stories and make dinner and put kids to bed. But it scarred my soul.
Three years later. Three years of having my inside ground up and turned to dust. Of going to church and begging God for help and feeling utterly abandoned. Three years later, I turned to my husband and said, “I cannot fix this.” That statement was the beginning of my new life and hope.
It took another couple of years to go online and when I did, I found the community and support that I needed. It took those two years to work that anger out of my system. Even when I was feeling good, I could feel anger's cold tentacles gripping my heart.
Rick Warren in his book “The Purpose Driven Life” says in effect that your problems are your ministry. I believe that to be true. I wish that I could say that I run a great ministry for parents of children with autism. I don't. I'm a stay at home mother, who has a thirteen year old son with Asperger's. And he's doing well, not perfect, but good. But those ugly feelings did their work and God cultivated a heart of encouragement and mercy that I did not have before this dark experience.
What I have learned through all my anger is that God knows all about you and can take it. I was never dishonest with God about my feelings. You cannot be, even if you tried. I was always upfront with Him and never held a thing back. He bore it so patiently and met me with truth. Although I gave Him the dust and ashes of my soul, the Lord turned it into something beautiful.
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Christina Deanne is a wife and stay at home mother who lives in the Chicagoland area. She went back to college and is pursuing an Associates of Applied Arts degree. She has written several articles about her experiences as a parent of a child with Asperger's.
Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts
Tuesday, April 27, 2010
Thursday, April 22, 2010
5 More Common Myths about the Autism Spectrum
In a previous post, I listed five common myths about people on the autism spectrum. Here, I’ll discuss five more common myths and their factual counterparts.
Myth 1: People on the autism spectrum cannot get married and raise a family
Fact: Many autistics are happily married and parents. While it may be more difficult for a person on the autism spectrum to maintain relationships and deal with the stress of raising children, there is no reason to believe they are incapable of living a normal, happy life.
Myth 2: People on the autism spectrum have excellent memories
Fact: This is a common misconception likely based on the seemingly endless streams of trivia some autistics can recite. However, not all autistics have the profound memorization skills often attributed to them. Some have above average memories, some have average memories, and some have memories that resemble a sieve: the information goes in and then goes back out just as quickly.
Myth 3: People on the autism spectrum are unhappy and miserable
Fact: While many autistics do suffer from depression, it is usually not caused by the autism itself. Instead, the depression comes as a result of the treatment of those around them and society as a whole, who look at the diagnosis of an autism spectrum disorder and immediately make assumptions about the persons abilities, or lack thereof, based solely on preconceived misconceptions. Placing limitations on an autistic simply because he is autistic is one of the worst things you can do. No one likes to hear he can’t do something because of something that makes him different; that’s what led to the civil rights movement of the 1960s. People on the autism spectrum who are allowed to be themselves, even if that self isn’t “normal,” tend to be much happier and more well-adjusted than autistics who are forced to conform or held back because of their autism.
Myth 4: People on the autism spectrum want to be cured
Fact: Although many people may call for a cure for autism, few of them are on the spectrum themselves. The majority of autistics are against a cure because they don’t feel they should be cured of who they are. Autism isn’t a disease; it is a way of life. To cure autism is to take away what makes the autistic who she is. Some have equated curing autism with genocide. In a way, that is just what it is, for autism cannot be separated from the autistic and to eradicate autism would eradicate one segment of society. Autism doesn’t need to be cured, it needs to be accepted and autistics allowed to be themselves without fear.
Myth 5: People on the autism spectrum are all savants
Fact: It is true that some autistics have special abilities, but there are no more savants on the autism spectrum than there are in any other group of people. Just like neurotypicals (people not on the autism spectrum), autistics have a range of talents, abilities, and deficits. To believe that every autistic must be an expert at something is to believe a lie. Most autistics are average at a variety of things, just like the rest of society. They may work to develop their talents and become impressive musicians or mathematicians, but the majority aren’t prodigies. They are just people who are good at some things and not so good at others.
The important thing to remember about people on the autism spectrum is that they are people who happen to be different. They aren’t a group to be pitied or looked down upon. Most of them would gladly answer the questions of anyone truly interested in learning about the realities of autism. Above all, treat autistics as you would anyone else and allow for the differences that are sure to make themselves known.
Myth 1: People on the autism spectrum cannot get married and raise a family
Fact: Many autistics are happily married and parents. While it may be more difficult for a person on the autism spectrum to maintain relationships and deal with the stress of raising children, there is no reason to believe they are incapable of living a normal, happy life.
Myth 2: People on the autism spectrum have excellent memories
Fact: This is a common misconception likely based on the seemingly endless streams of trivia some autistics can recite. However, not all autistics have the profound memorization skills often attributed to them. Some have above average memories, some have average memories, and some have memories that resemble a sieve: the information goes in and then goes back out just as quickly.
Myth 3: People on the autism spectrum are unhappy and miserable
Fact: While many autistics do suffer from depression, it is usually not caused by the autism itself. Instead, the depression comes as a result of the treatment of those around them and society as a whole, who look at the diagnosis of an autism spectrum disorder and immediately make assumptions about the persons abilities, or lack thereof, based solely on preconceived misconceptions. Placing limitations on an autistic simply because he is autistic is one of the worst things you can do. No one likes to hear he can’t do something because of something that makes him different; that’s what led to the civil rights movement of the 1960s. People on the autism spectrum who are allowed to be themselves, even if that self isn’t “normal,” tend to be much happier and more well-adjusted than autistics who are forced to conform or held back because of their autism.
Myth 4: People on the autism spectrum want to be cured
Fact: Although many people may call for a cure for autism, few of them are on the spectrum themselves. The majority of autistics are against a cure because they don’t feel they should be cured of who they are. Autism isn’t a disease; it is a way of life. To cure autism is to take away what makes the autistic who she is. Some have equated curing autism with genocide. In a way, that is just what it is, for autism cannot be separated from the autistic and to eradicate autism would eradicate one segment of society. Autism doesn’t need to be cured, it needs to be accepted and autistics allowed to be themselves without fear.
Myth 5: People on the autism spectrum are all savants
Fact: It is true that some autistics have special abilities, but there are no more savants on the autism spectrum than there are in any other group of people. Just like neurotypicals (people not on the autism spectrum), autistics have a range of talents, abilities, and deficits. To believe that every autistic must be an expert at something is to believe a lie. Most autistics are average at a variety of things, just like the rest of society. They may work to develop their talents and become impressive musicians or mathematicians, but the majority aren’t prodigies. They are just people who are good at some things and not so good at others.
The important thing to remember about people on the autism spectrum is that they are people who happen to be different. They aren’t a group to be pitied or looked down upon. Most of them would gladly answer the questions of anyone truly interested in learning about the realities of autism. Above all, treat autistics as you would anyone else and allow for the differences that are sure to make themselves known.
Thursday, April 8, 2010
5 Common Myths about the Autism Spectrum
Many myths abound about autism spectrum disorders (ASDs). Unfortunately, for those unfamiliar with ASDs, it can be difficult to distinguish between fact and fiction. Here are five common myths and the truths behind them.
Myth 1: People on the autism spectrum have no emotions
Fact: This myth is likely the result of many people on the autism spectrum expressing their emotions in atypical manners. Both children and adults on the spectrum experience the same range of emotions and depth of feeling as neurotypicals (people without an ASD). Autistics may laugh when others cry; they may cry when others are happy; they may show no outward sign of emotion, but the feelings are still there. Assuming they have no emotions is very hurtful to an autistic.
Myth 2: People on the autism spectrum are unaware of their surroundings
Fact: Just because an autistic is looking at the floor rather than the people around him doesn’t mean he is unaware of what is going on. Rather, he’s probably focusing on the conversation around him and absorbing every word. Many people on the autism spectrum have few or no filters when it comes to the information they take in. If they were to look at the people involved in a conversation while trying to listen to it, they would likely become distracted by the way a person’s mouth moves, the clothes people are wearing, hairstyles, etc. and miss every word spoken. By focusing on something bland, like the floor, or closing their eyes, it enables them to focus better on the conversation. You just might be surprised by what they have to add to the discussion.
Myth 3: People on the autism spectrum are either mentally handicapped or geniuses
Fact: In reality, people on the autism spectrum have the same range of IQs and in the same ratio as those not on the spectrum. You will find autistics with high IQs and those with low IQs, but the majority will fall somewhere in between.
Myth 4: People on the autism spectrum are lonely
Fact: While this may be true for some, not all autistics crave being the center of attention and surrounded by people most of the time. Many people on the autism spectrum like to be alone. They find it relaxing to not have to try to “fit in” or understand what the people around them might be thinking. It gives them the opportunity to let their minds wander and do what they enjoy. Most people think a solitary life would be torture, but many autistics enjoy it.
Myth 5: People on the autism spectrum cannot work
Fact: Many autistics can and do work. They may not function well in a highly social position, like a cashier at the local supermarket, but they are perfectly capable of working in the right environment. Autistics can be successful in a multitude of jobs, from working in a call center to being a research scientist. Each individual has his own unique abilities and interests which may lend themselves to a long-term career. Others work at whatever job is available that they can handle while looking for a career that involves their interests.
One of the worst things a person can do is to set limitations for people on the autism spectrum. Given a chance, autistics tend to surprise people with their abilities. Yes, autistics are different, but differences are what make the world the wonderful and diverse place it is.
Myth 1: People on the autism spectrum have no emotions
Fact: This myth is likely the result of many people on the autism spectrum expressing their emotions in atypical manners. Both children and adults on the spectrum experience the same range of emotions and depth of feeling as neurotypicals (people without an ASD). Autistics may laugh when others cry; they may cry when others are happy; they may show no outward sign of emotion, but the feelings are still there. Assuming they have no emotions is very hurtful to an autistic.
Myth 2: People on the autism spectrum are unaware of their surroundings
Fact: Just because an autistic is looking at the floor rather than the people around him doesn’t mean he is unaware of what is going on. Rather, he’s probably focusing on the conversation around him and absorbing every word. Many people on the autism spectrum have few or no filters when it comes to the information they take in. If they were to look at the people involved in a conversation while trying to listen to it, they would likely become distracted by the way a person’s mouth moves, the clothes people are wearing, hairstyles, etc. and miss every word spoken. By focusing on something bland, like the floor, or closing their eyes, it enables them to focus better on the conversation. You just might be surprised by what they have to add to the discussion.
Myth 3: People on the autism spectrum are either mentally handicapped or geniuses
Fact: In reality, people on the autism spectrum have the same range of IQs and in the same ratio as those not on the spectrum. You will find autistics with high IQs and those with low IQs, but the majority will fall somewhere in between.
Myth 4: People on the autism spectrum are lonely
Fact: While this may be true for some, not all autistics crave being the center of attention and surrounded by people most of the time. Many people on the autism spectrum like to be alone. They find it relaxing to not have to try to “fit in” or understand what the people around them might be thinking. It gives them the opportunity to let their minds wander and do what they enjoy. Most people think a solitary life would be torture, but many autistics enjoy it.
Myth 5: People on the autism spectrum cannot work
Fact: Many autistics can and do work. They may not function well in a highly social position, like a cashier at the local supermarket, but they are perfectly capable of working in the right environment. Autistics can be successful in a multitude of jobs, from working in a call center to being a research scientist. Each individual has his own unique abilities and interests which may lend themselves to a long-term career. Others work at whatever job is available that they can handle while looking for a career that involves their interests.
One of the worst things a person can do is to set limitations for people on the autism spectrum. Given a chance, autistics tend to surprise people with their abilities. Yes, autistics are different, but differences are what make the world the wonderful and diverse place it is.
Thursday, April 1, 2010
Autism Awareness Month
April first is more than just April Fool’s Day. It’s also the start of Autism Awareness Month. Therefore, I’m dedicating my blog to raising awareness of autism this month. In addition to some facts about autism and a bit about my own experiences as an autistic, there will be guest bloggers sharing their experiences with autism. A new post will appear every Tuesday and Thursday, and there might be a few random posts on other days, so be sure to check back often.
To kick off this month-long autism blog event, and because Easter is in just a few days, here’s a little information about autism and holidays.
Holidays can be stressful with parties, family gatherings, decorating, and travel. For an autistic it can be even more stressful. In addition to the usual stressors, the normal routine is upset, the house may look different, and being around relatives he hasn’t seen in a while can be overwhelming. But there’s no need to refrain from including an autistic in all of your festivities or change your holiday plans.
To make the transition from everyday routine to holiday festivities as painless as possible, try including your autistic child in the planning if you can. Now, she may not want to help or she may even seem uninterested, but give her the option anyway.
Go over the holiday schedule several times, starting a few days before the first change in routine. You may have to keep reminding the autistic of what is happening when, even in the midst of the holiday celebration.
If you’re going to visit family, talk about who you’re going to see. Reminding an autistic of past family gatherings and even using photographs to help refresh his memory can help make visiting family go much more smoothly.
If you have a special dinner planned, let the autistic help with it. Helping plan the menu or prepare the meal is a great way to help her adjust to the change in eating routine. Allowing her to help decorate for the holiday will help her feel more comfortable with the change in appearance of home.
With all holiday festivities, be sure there’s place for the autistic to escape and de-stress. Regardless of how prepared he is for the dinner, gathering, etc., the change in routine and number of people can still push him to the point of a meltdown. Knowing there’s a quiet place he can go to relax for a little while will go a long way toward helping him enjoy the holiday as much as the rest of the family.
To kick off this month-long autism blog event, and because Easter is in just a few days, here’s a little information about autism and holidays.
Holidays can be stressful with parties, family gatherings, decorating, and travel. For an autistic it can be even more stressful. In addition to the usual stressors, the normal routine is upset, the house may look different, and being around relatives he hasn’t seen in a while can be overwhelming. But there’s no need to refrain from including an autistic in all of your festivities or change your holiday plans.
To make the transition from everyday routine to holiday festivities as painless as possible, try including your autistic child in the planning if you can. Now, she may not want to help or she may even seem uninterested, but give her the option anyway.
Go over the holiday schedule several times, starting a few days before the first change in routine. You may have to keep reminding the autistic of what is happening when, even in the midst of the holiday celebration.
If you’re going to visit family, talk about who you’re going to see. Reminding an autistic of past family gatherings and even using photographs to help refresh his memory can help make visiting family go much more smoothly.
If you have a special dinner planned, let the autistic help with it. Helping plan the menu or prepare the meal is a great way to help her adjust to the change in eating routine. Allowing her to help decorate for the holiday will help her feel more comfortable with the change in appearance of home.
With all holiday festivities, be sure there’s place for the autistic to escape and de-stress. Regardless of how prepared he is for the dinner, gathering, etc., the change in routine and number of people can still push him to the point of a meltdown. Knowing there’s a quiet place he can go to relax for a little while will go a long way toward helping him enjoy the holiday as much as the rest of the family.
Friday, March 12, 2010
This 'n' That
Things have been busy around here since I last posted, which is why I'm late posting this week. Here's a brief rundown of the excitement (and yes, some of it is pretty exciting!).
The most exciting piece of news is that I received a release date for Riley's Mission! My very first romantic suspense will be available from The Wild Rose Press April 7. Yes, that's a little less than a month from now, but it seems like such a long wait for my "baby" to make its debut in the world. Ah, well, I have plenty to keep me busy in the meantime, including working on more writing projects.
Which brings me to another exciting thing. I submitted a query for a sequel to Riley's Mission to my editor. Now I'm in the nail-biting, "Will she like it?" waiting period. Of course, if she likes the sound of the story, then I have to submit the manuscript and do a little more nail biting. I don't mind too much, however, since every submission brings the story one step closer to publication.
More writing-related news. I started a new job writing articles. While it can be difficult to write some of the topics, I'm enjoying the job and it works well with the odd hours I sometimes keep. What other job would allow me to work at noon or two in the morning (or both) depending on the kind of day I'm having? The people who say self-employment/freelance work is great for autistics are so right. Without the flexibility I have with this job, I wouldn't do nearly as well.
Speaking of autism, I'm still looking for guest bloggers for the month of April. If you're interested in writing a post with a positive spin on autism, you can find the details of my blogging plan for Autism Awareness Month here.
And now for the totally off-the-wall bit of news. I successfully crocheted a coat for my shih tzu. Yes, I'm now one of those people who puts clothes on her small dog. He's so adorable in his black and tan coat with a big red button on the side! I needed some way to secure the strap that goes behind his front legs, and with his penchant for getting into things when outside, the button will work better than Velcro. Why did I make a coat for him, you ask? So I can get his fur trimmed in cold weather without having to worry about him freezing when he goes outside. He's a shaggy little fella right now, and I'd like to get his usual warm-weather haircut so he looks a little more sophisticated, which if you knew my dog would make you laugh. He's like the little human boy who can get his dress clothes muddy without ever leaving his chair.
I also learned something sad in the last couple of days. I live in an affordable cotton yarn wasteland...or maybe that should be a yarn wasteland. There are precisely two yarn shops listed in my current phone book, and one of them went out of business a year or so ago. The other one is open two afternoons a week. I know there are a ton of knitters and crocheters in my area; I've met several of them and heard about many more. Where do they get their yarn? My best guess is that they either buy whatever yarn is available at the local craft stores (there are at least three that I know for sure are still in business), but I have to wonder if they order their yarn online, which is what I'm going to have to do. Out of the single yarn shop and three or so craft stores in my area, not one of them carries either of the two affordable brands of cotton yarn I'm looking for. I found a website that carries both of them, so I'm stuck paying shipping. The sad thing is, even with the shipping costs, it will still be more affordable than the only worsted weight cotton yarn I could buy locally.
All that's left to say is, Happy Friday! I hope you all have a great weekend and be sure to celebrate what's left of E-book Week with a good read. Shameless promotion alert! I happen to have two ebooks available at affordable prices. If you're looking for a quick read in the mystery genre, why not check out Light in the Darkness? Or if inspirational romance is more your style, try Dreams Do Come True.
Enjoy your weekend!
The most exciting piece of news is that I received a release date for Riley's Mission! My very first romantic suspense will be available from The Wild Rose Press April 7. Yes, that's a little less than a month from now, but it seems like such a long wait for my "baby" to make its debut in the world. Ah, well, I have plenty to keep me busy in the meantime, including working on more writing projects.
Which brings me to another exciting thing. I submitted a query for a sequel to Riley's Mission to my editor. Now I'm in the nail-biting, "Will she like it?" waiting period. Of course, if she likes the sound of the story, then I have to submit the manuscript and do a little more nail biting. I don't mind too much, however, since every submission brings the story one step closer to publication.
More writing-related news. I started a new job writing articles. While it can be difficult to write some of the topics, I'm enjoying the job and it works well with the odd hours I sometimes keep. What other job would allow me to work at noon or two in the morning (or both) depending on the kind of day I'm having? The people who say self-employment/freelance work is great for autistics are so right. Without the flexibility I have with this job, I wouldn't do nearly as well.
Speaking of autism, I'm still looking for guest bloggers for the month of April. If you're interested in writing a post with a positive spin on autism, you can find the details of my blogging plan for Autism Awareness Month here.
And now for the totally off-the-wall bit of news. I successfully crocheted a coat for my shih tzu. Yes, I'm now one of those people who puts clothes on her small dog. He's so adorable in his black and tan coat with a big red button on the side! I needed some way to secure the strap that goes behind his front legs, and with his penchant for getting into things when outside, the button will work better than Velcro. Why did I make a coat for him, you ask? So I can get his fur trimmed in cold weather without having to worry about him freezing when he goes outside. He's a shaggy little fella right now, and I'd like to get his usual warm-weather haircut so he looks a little more sophisticated, which if you knew my dog would make you laugh. He's like the little human boy who can get his dress clothes muddy without ever leaving his chair.
I also learned something sad in the last couple of days. I live in an affordable cotton yarn wasteland...or maybe that should be a yarn wasteland. There are precisely two yarn shops listed in my current phone book, and one of them went out of business a year or so ago. The other one is open two afternoons a week. I know there are a ton of knitters and crocheters in my area; I've met several of them and heard about many more. Where do they get their yarn? My best guess is that they either buy whatever yarn is available at the local craft stores (there are at least three that I know for sure are still in business), but I have to wonder if they order their yarn online, which is what I'm going to have to do. Out of the single yarn shop and three or so craft stores in my area, not one of them carries either of the two affordable brands of cotton yarn I'm looking for. I found a website that carries both of them, so I'm stuck paying shipping. The sad thing is, even with the shipping costs, it will still be more affordable than the only worsted weight cotton yarn I could buy locally.
All that's left to say is, Happy Friday! I hope you all have a great weekend and be sure to celebrate what's left of E-book Week with a good read. Shameless promotion alert! I happen to have two ebooks available at affordable prices. If you're looking for a quick read in the mystery genre, why not check out Light in the Darkness? Or if inspirational romance is more your style, try Dreams Do Come True.
Enjoy your weekend!
Wednesday, January 13, 2010
Small talk...or not
Okay, I've admitted a few times on here that I'm autistic, and for some reason that always surprises everyone. I have no idea why, but apparently to the Internet world I'm not at all different or weird. It's nice to be accepted as is and not have to pretend to be someone different to fit in, but I feel the need to confess to the occasional lack of small talk ability. What does that have to do with interaction on the Internet?
Trust me, a lot of groups I belong to thrive on small talk, just like any group of people in "real life." I enjoy reading the exchanges (it also helps me write more realistic characters) and sometimes I join the written small talk. A lot of times, however, I know I ought to respond somehow, but I have no idea what to say. While I'm trying to figure it out, days can pass. By the time I have something to add to the conversation, the topic has changed and I remain silent, which is what happens in the non-virtual world as well.
I know, you're probably thinking, "It's email groups/forums/etc. That stuff hangs around forever. Why not go ahead and respond, even if it is a week or more later?" The simple answer? The real world has me too well trained. In face-to-face interactions, there have been way too many times I've finally added something to the conversation several minutes after the topic has moved on and received strange looks, expressions of annoyance, or (the worst) brought the conversation to a complete halt and people suddenly have something else to do. I can't shake the feeling that when I respond late to a topic when the group is already on a different topic, the other groups members are sitting at their own computers wondering what I was thinking for trying to keep a closed subject open. Goofy fear on my part, I know, but that's the way it is.
My only excuse for small talk difficulties, whether online or not, is that people on the spectrum are known for problems with social interaction. Within five or ten minutes of meeting me in person, people rarely have any trouble believing I have an ASD (autism spectrum disorder). But as I've said before, the Internet is a great equalizer. I have plenty of time to think about how to say what I want to say, and I can revise it before sending if I need to. I also don't have to worry about stumbling over words or the words getting stuck somewhere between my brain and my mouth, because I don't have to verbalize my thoughts. I do it all through written word, which is the easiest way for me to convey my thoughts. The only drawback (aside from brain freeze in chat rooms) is the whole "small talk overwhelms me at times" thing.
To stay marginally on topic, I ran across a comic today that describes me perfectly on some days:
EDIT: It appears this comic may or may not show fully thanks to my blog design. If you have trouble seeing the full image, you can find the original here.
There's nothing like trying to figure out how much information to give, how to best describe how you're doing, etc. in a split second. Thankfully, most of the time I feel kind of like Pavlov's dogs. The question "How are you?" is my bell and my automatic response is, "Fine," regardless of the dozen or so ways I could answer. I know a conditioned response like that doesn't sound like something to be thankful for, but it's a whole lot less awkward than the long, likely rambling answer I would otherwise give about how I am.
Will I ever fully overcome my troubles with small talk? I seriously doubt it. For one thing, I get bored easily with conversations that go nowhere. Plus, my brain just doesn't think "chitchat" most of the time. I can usually fake it pretty well, but most of the time I definitely prefer deeper conversations...you know, the ones that do more than fill silence.
Okay, reading that last paragraph makes me wonder just how snarky people will find it, but I didn't mean it in a snarky way at all. That's just the way I see it. I'm sure there are others who enjoy small talk, and I admire you for the ability to chitchat with ease. Differences in personalities keep the world an interesting place to live.
On a side note, I'll be chatting with The Sweetest Romance Authors all day Thursday, January 14, at the Coffee Time Romance forum. Be sure to stop by and leave a comment or two! Even though I'm not that great at small talk, I always enjoy the chance to chat with readers and other authors.
Trust me, a lot of groups I belong to thrive on small talk, just like any group of people in "real life." I enjoy reading the exchanges (it also helps me write more realistic characters) and sometimes I join the written small talk. A lot of times, however, I know I ought to respond somehow, but I have no idea what to say. While I'm trying to figure it out, days can pass. By the time I have something to add to the conversation, the topic has changed and I remain silent, which is what happens in the non-virtual world as well.
I know, you're probably thinking, "It's email groups/forums/etc. That stuff hangs around forever. Why not go ahead and respond, even if it is a week or more later?" The simple answer? The real world has me too well trained. In face-to-face interactions, there have been way too many times I've finally added something to the conversation several minutes after the topic has moved on and received strange looks, expressions of annoyance, or (the worst) brought the conversation to a complete halt and people suddenly have something else to do. I can't shake the feeling that when I respond late to a topic when the group is already on a different topic, the other groups members are sitting at their own computers wondering what I was thinking for trying to keep a closed subject open. Goofy fear on my part, I know, but that's the way it is.
My only excuse for small talk difficulties, whether online or not, is that people on the spectrum are known for problems with social interaction. Within five or ten minutes of meeting me in person, people rarely have any trouble believing I have an ASD (autism spectrum disorder). But as I've said before, the Internet is a great equalizer. I have plenty of time to think about how to say what I want to say, and I can revise it before sending if I need to. I also don't have to worry about stumbling over words or the words getting stuck somewhere between my brain and my mouth, because I don't have to verbalize my thoughts. I do it all through written word, which is the easiest way for me to convey my thoughts. The only drawback (aside from brain freeze in chat rooms) is the whole "small talk overwhelms me at times" thing.
To stay marginally on topic, I ran across a comic today that describes me perfectly on some days:
EDIT: It appears this comic may or may not show fully thanks to my blog design. If you have trouble seeing the full image, you can find the original here.
There's nothing like trying to figure out how much information to give, how to best describe how you're doing, etc. in a split second. Thankfully, most of the time I feel kind of like Pavlov's dogs. The question "How are you?" is my bell and my automatic response is, "Fine," regardless of the dozen or so ways I could answer. I know a conditioned response like that doesn't sound like something to be thankful for, but it's a whole lot less awkward than the long, likely rambling answer I would otherwise give about how I am.
Will I ever fully overcome my troubles with small talk? I seriously doubt it. For one thing, I get bored easily with conversations that go nowhere. Plus, my brain just doesn't think "chitchat" most of the time. I can usually fake it pretty well, but most of the time I definitely prefer deeper conversations...you know, the ones that do more than fill silence.
Okay, reading that last paragraph makes me wonder just how snarky people will find it, but I didn't mean it in a snarky way at all. That's just the way I see it. I'm sure there are others who enjoy small talk, and I admire you for the ability to chitchat with ease. Differences in personalities keep the world an interesting place to live.
On a side note, I'll be chatting with The Sweetest Romance Authors all day Thursday, January 14, at the Coffee Time Romance forum. Be sure to stop by and leave a comment or two! Even though I'm not that great at small talk, I always enjoy the chance to chat with readers and other authors.
Wednesday, November 18, 2009
Think Autism, Think Different
I've been thinking about autism a lot lately, mainly because in the last few months I finally decided to give seeking an official diagnosis one last chance. It was a highly emotional process, one that alternately drained me and made me hyper for weeks, but I did finally receive a diagnosis of an autism spectrum disorder. Since receiving that report (which made me laugh in several places because these supposed oddities have been a normal part of my life forever), I've been trying to figure out what happens now. I have a paper to prove I'm autistic, but what do I do with it? Shove it in a drawer and move on? Frame it and hang it on the wall as evidence of my lifelong struggle to get an official diagnosis?
Within the last couple of weeks, I decided to put that diagnosis to good use. Up to now, I've never had any kind of credibility to write about autism or write autistic characters. I don't have any kind of degree, I don't work with people on the spectrum all the time, and even though I was self-diagnosed (and had several people agree with that self-diagnosis) that didn't prove to anyone that I know what I'm talking about. Thanks to that official diagnosis, I now have the confidence to speak out about a topic that my family is probably sick of hearing me talk about: curing autism.
Warning! The remainder of this post is likely to anger some people. I apologize if you're offended. Curing autism is a controversial topic with people on both sides of the issue feeling strongly about it. My views are not what the media tend to focus on, but they are shared by many other autistics. Feel free to comment at the end of the post whether you agree or disagree, but please keep your comments clean. Foul language or personal attacks will make me seriously consider deleting the comment.
Okay, back to the post.
As I've said, I am autistic. Autism is not a disease, scourge, or even a terrible tragedy in a lot of cases. Autism is a different way of life. Personally, I don't want to be "cured" of autism, mainly because there's nothing to cure. Autism is a huge part of who I am, what makes me...well, me. A lot of autistics feel the same way, including those who are high-functioning and live independently and those who are non-verbal and need someone to help with basic needs. We are not miserable because of autism. Actually, I find autism fun a lot of times because it allows me to see things in ways neurotypicals likely don't.
Note I said "neurotypical" and not "normal." Honestly, I detest comparisons between autistics and "normal" people, becuase it implies there's something wrong with me. There's nothing wrong with me; I'm not broken or in need of a cure. I'm different, plain and simple. Diversity is a great thing. It makes the world the exciting, interesting place it is. It's also the way God designed it. Diversity in race, religion, creed, etc. is widely accepted and encouraged. Now the world needs to focus on and accept neurodiversity. My favorite way of describing autism is that my brain is wired funny. That's really the only logical way I can describe a neurological difference, which is all autism is.
All of this explains why I get annoyed when people call for a cure for autism. The majority of those people are neurotypicals. Many of them have children on the spectrum or know someone who does. But I have to wonder how many of them have actually communicated with their child, either verbally or through some other means like a computer or sign language. Many autistics have spoken out, through writing and verbally, against curing autism. I have to agree with those who equate curing autism with a death sentence for autistics. The best way I can explain it is to offer an example.
As I've said, autism is a way of life and a huge part of who I am. Curing autism, taking it away, would turn my world upside down. It would be like "curing" a neurotypical of having a sense of humor or a left-handed person of being left-handed. It doesn't make much sense, does it? So why do people persist in calling for an autism cure?
I can understand wanting to teach autistics how to cope better in the world and helping them live as independently as possible. I'm all for it. But that doesn't "cure" autism. It just teaches them life skills...the same as every other child has to learn. The big issue here is acceptance. Do you accept autistics and all their differences or do you pity us for something the majority of us embrace?
This leads me to the "charitable" organization Autism Speaks. Let me say right here, Autism Speaks does NOT speak for me or any other autistic. Their literature, commercials, PSAs, etc. make it clear they don't support autistics. They call for getting rid of autism, blame autism for marital problems, and basically imply that autism is a scourge on society. It gives me chills just thinking about the way they make it clear they hate autism. They don't appear to like autistics much better. Watch the PSA they put out not long ago titled "I am Autism" and try to view it from the persepctive of an autistic, someone who views autism as inseparable from their identity. I think you'll understand why that video made me cry and want to put a stop to the hate this organization is spreading. For another perspective on the "I am Autism" PSA, check out this video (also called "I am Autism"). There area remarkably few edits to the Autism Speaks script, which makes the Autism Speaks message all the more chilling.
Last year, Autism Speaks recieved more than sixty-five million dollars. The president of this supposedly charitable organization was paid over four hundred thousand dollars. The chief science officer was paid over half a million dollars. Those are ridiculous salaries for people working for a non-profit organization. Half a million dollars is definitely profitable. For a simple break down of where the 2008 money went, check out this video. If you prefer looking at detailed tax forms, here's one on the Autism Speaks website.
As far as I can tell, very few actual autistics are helped by Autism Speaks or involved in running it. In fact, the organization was asked why there aren't any autistics on the board. The response? Autism Speaks feels it would be "inappropriate" to have anyone on the spectrum helping run the organization.
How on earth is an autistic helping run an organization called Autism Speaks "inappropriate"?
This organization has also been known to sue or threaten to sue autistics who speak out against them or parody anything they produce. The saddest example of this I've come across to date is a 14-year-old girl on the spectrum who created a site called NT Speaks. It was a parody of the Autism Speaks site, and therefore perfectly legal since parodies are protected by law, but Autism Speaks sent a letter to this girl threatening to sue her. This letter scared her so much she took her site down and destroyed the code behind it. Autism Speaks had no legal leg to stand on, since what she'd done was legal, but that didn't stop them from throwing their corporate weight around to scare a teenager.
It wouldn't surprise me if I get a letter threatening to sue me for libel because of this post, but I feel it necessary to warn anyone who wants to help autistics that the autistic community is not helped by Autism Speaks. As a member of the autistic community, I actually feel rather threatened by this huge, frightening organization that claims to be speaking for us while doing us a great disservice by perpetuating myths about autsim.
There are a great many autistics writing about their experiences, opinions, etc. all over the internet. If you want a true view of autism from people who live it every single day of their lives, I'd recommend checking out Autistics.org, Aspies for Freedom, the Autism Self Advocacy Network, or any of the myriad blogs and personal websites maintained by autistics. Be warned, you may not like what you find, but you can be assured they're the true views and opinions of real autistics.
Within the last couple of weeks, I decided to put that diagnosis to good use. Up to now, I've never had any kind of credibility to write about autism or write autistic characters. I don't have any kind of degree, I don't work with people on the spectrum all the time, and even though I was self-diagnosed (and had several people agree with that self-diagnosis) that didn't prove to anyone that I know what I'm talking about. Thanks to that official diagnosis, I now have the confidence to speak out about a topic that my family is probably sick of hearing me talk about: curing autism.
Warning! The remainder of this post is likely to anger some people. I apologize if you're offended. Curing autism is a controversial topic with people on both sides of the issue feeling strongly about it. My views are not what the media tend to focus on, but they are shared by many other autistics. Feel free to comment at the end of the post whether you agree or disagree, but please keep your comments clean. Foul language or personal attacks will make me seriously consider deleting the comment.
Okay, back to the post.
As I've said, I am autistic. Autism is not a disease, scourge, or even a terrible tragedy in a lot of cases. Autism is a different way of life. Personally, I don't want to be "cured" of autism, mainly because there's nothing to cure. Autism is a huge part of who I am, what makes me...well, me. A lot of autistics feel the same way, including those who are high-functioning and live independently and those who are non-verbal and need someone to help with basic needs. We are not miserable because of autism. Actually, I find autism fun a lot of times because it allows me to see things in ways neurotypicals likely don't.
Note I said "neurotypical" and not "normal." Honestly, I detest comparisons between autistics and "normal" people, becuase it implies there's something wrong with me. There's nothing wrong with me; I'm not broken or in need of a cure. I'm different, plain and simple. Diversity is a great thing. It makes the world the exciting, interesting place it is. It's also the way God designed it. Diversity in race, religion, creed, etc. is widely accepted and encouraged. Now the world needs to focus on and accept neurodiversity. My favorite way of describing autism is that my brain is wired funny. That's really the only logical way I can describe a neurological difference, which is all autism is.
All of this explains why I get annoyed when people call for a cure for autism. The majority of those people are neurotypicals. Many of them have children on the spectrum or know someone who does. But I have to wonder how many of them have actually communicated with their child, either verbally or through some other means like a computer or sign language. Many autistics have spoken out, through writing and verbally, against curing autism. I have to agree with those who equate curing autism with a death sentence for autistics. The best way I can explain it is to offer an example.
As I've said, autism is a way of life and a huge part of who I am. Curing autism, taking it away, would turn my world upside down. It would be like "curing" a neurotypical of having a sense of humor or a left-handed person of being left-handed. It doesn't make much sense, does it? So why do people persist in calling for an autism cure?
I can understand wanting to teach autistics how to cope better in the world and helping them live as independently as possible. I'm all for it. But that doesn't "cure" autism. It just teaches them life skills...the same as every other child has to learn. The big issue here is acceptance. Do you accept autistics and all their differences or do you pity us for something the majority of us embrace?
This leads me to the "charitable" organization Autism Speaks. Let me say right here, Autism Speaks does NOT speak for me or any other autistic. Their literature, commercials, PSAs, etc. make it clear they don't support autistics. They call for getting rid of autism, blame autism for marital problems, and basically imply that autism is a scourge on society. It gives me chills just thinking about the way they make it clear they hate autism. They don't appear to like autistics much better. Watch the PSA they put out not long ago titled "I am Autism" and try to view it from the persepctive of an autistic, someone who views autism as inseparable from their identity. I think you'll understand why that video made me cry and want to put a stop to the hate this organization is spreading. For another perspective on the "I am Autism" PSA, check out this video (also called "I am Autism"). There area remarkably few edits to the Autism Speaks script, which makes the Autism Speaks message all the more chilling.
Last year, Autism Speaks recieved more than sixty-five million dollars. The president of this supposedly charitable organization was paid over four hundred thousand dollars. The chief science officer was paid over half a million dollars. Those are ridiculous salaries for people working for a non-profit organization. Half a million dollars is definitely profitable. For a simple break down of where the 2008 money went, check out this video. If you prefer looking at detailed tax forms, here's one on the Autism Speaks website.
As far as I can tell, very few actual autistics are helped by Autism Speaks or involved in running it. In fact, the organization was asked why there aren't any autistics on the board. The response? Autism Speaks feels it would be "inappropriate" to have anyone on the spectrum helping run the organization.
How on earth is an autistic helping run an organization called Autism Speaks "inappropriate"?
This organization has also been known to sue or threaten to sue autistics who speak out against them or parody anything they produce. The saddest example of this I've come across to date is a 14-year-old girl on the spectrum who created a site called NT Speaks. It was a parody of the Autism Speaks site, and therefore perfectly legal since parodies are protected by law, but Autism Speaks sent a letter to this girl threatening to sue her. This letter scared her so much she took her site down and destroyed the code behind it. Autism Speaks had no legal leg to stand on, since what she'd done was legal, but that didn't stop them from throwing their corporate weight around to scare a teenager.
It wouldn't surprise me if I get a letter threatening to sue me for libel because of this post, but I feel it necessary to warn anyone who wants to help autistics that the autistic community is not helped by Autism Speaks. As a member of the autistic community, I actually feel rather threatened by this huge, frightening organization that claims to be speaking for us while doing us a great disservice by perpetuating myths about autsim.
There are a great many autistics writing about their experiences, opinions, etc. all over the internet. If you want a true view of autism from people who live it every single day of their lives, I'd recommend checking out Autistics.org, Aspies for Freedom, the Autism Self Advocacy Network, or any of the myriad blogs and personal websites maintained by autistics. Be warned, you may not like what you find, but you can be assured they're the true views and opinions of real autistics.
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