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asperger.
Ten Things Every Child Person with Autism Wishes You Knew
I know what they mean, but please. Can we stop always talking about "children with autism"? Because children grow up, and become adults, and then are promptly forgotten by the rest of the world.
By Ellen Notbohm
South Florida Parenting
Some days it seems the only predictable thing about it is the unpredictability. The only consistent attribute, the inconsistency. There is little argument on any level but that autism is baffling, even to those who spend their lives around it.
The weather is baffling. Quantum physics is baffling. Quidditch scoring is baffling. The common cold is baffling (if predictable).
The child who lives with autism may look "normal," but his or her behavior can be perplexing and downright difficult.
Not to put too find a point on it, but the behaviour of most kids can be perplexing and downright difficult. Just sayin'....
Today, the citadel of autism, once thought an "incurable" disorder, is cracking around the foundation.
We have a citadel? Since when? I WANNA SEE!!! Does it have a cool name, like "Fortress of DOOM (and Solitude)"?
Yes, I'm being silly. It's a lot easier than going on about "incurable disorder".
Every day, individuals with autism show us they can overcome, compensate for, and otherwise manage many of the condition's most challenging aspects.
That's not the same as a cure.
Equipping those around our children with a simple understanding of autism's most basic elements has a tremendous effect on the children's journey towards productive, independent adulthood.
Well, yes, but... no. I'll leave somebody else to go on and on about the idea of people actually being independant.
Autism is an extremely complex disorder, but we can distill it to three critical components: sensory processing difficulties, speech/language delays and impairments, and whole child/social interaction issues.
Here are 10 things every child with autism wishes you knew.
Oh boy...
1. I am a child with autism. I am not "autistic." My autism is one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)?
But I *am* autistic. Just like I'm (probably) straight (not a person with heterosexuality), smart (not a person with intelligence), and 22 (not a person with 22 years of age, except in certain languages which aren't English). I'm also clumsy, and think that "uncoordinated" is just as bad.
Now, even if I wished to argue that all these things don't define me, I'd still be against the concept of "person-first language". It's stupid. Did you hear me? STUPID. Nobody talks like that. If I'm tall, I'm a tall person, if I'm short, I'm a short person, if I'm white, I'm a white person, if I'm black, I'm a black person, and so on. Messing with the standard word order and making the phrase longer just emphasizes the supposedly "bad" trait instead of my personhood. No, really. So quit it.
2. My sensory perceptions are disordered. This means the ordinary sights, sounds, smells, tastes and touches of everyday life that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you, but I am really just trying to defend myself. A "simple" trip to the grocery store may be hell for me. My hearing may be hyperacute. Dozens of people are talking at once. The loudspeaker booms today's special. Muzak whines from the sound system. Cash registers beep and cough. A coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can't filter all the input, and I'm in overload! My sense of smell may be highly sensitive. The fish at the meat counter isn't quite fresh, the guy standing next to us hasn't showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they're mopping up pickles on Aisle 3 with ammonia. ... I can't sort it all out, I'm too nauseous.
I tend to say that it's not so much that my senses are disordered (I'm not a synesthesiate here) as that other people lack the ability to see/hear/smell properly. That's not your fault, you can't help it.
Because I am visually oriented, this may be my first sense to become overstimulated. The fluorescent light is too bright. It makes the room pulsate and hurts my eyes. Sometimes the pulsating light bounces off everything and distorts what I am seeing. The space seems to be constantly changing. There's glare from windows, moving fans on the ceiling, so many bodies in constant motion, too many items for me to be able to focus - and I may compensate with tunnel vision. All this affects my vestibular sense, and now I can't even tell where my body is in space. I may stumble, bump into things, or simply lay down to try and regroup.
I'm not visually oriented. This is a myth. Many autistics are visually oriented, but that doesn't mean that all autistics are, or that no NTs are. There's no good that comes from pretending that autistics are a monolithic group of people who all perceive things in the same way.
On that subject, not all autistics are hypersensitive to everything. Some are hyposensitive. I am sometimes hypersensitive to touch (don't touch me, I'll jump, might break your nose) but at other times I'm hyposensitive, I end up in the shower trying to figure out where I got this cut or that bruise. I'm torn as to which is better....
3. Please remember to distinguish between won't (I choose not to) and can't (I'm not able to). Receptive and expressive language are both difficult for me. It isn't that I don't listen to instructions. It's that I can't understand you. When you call to me from across the room, this is what I hear: "*&^%$#@, Billy. #$%^*&^%$&*" Instead, come speak directly to me in plain words: "Please put your book in your desk, Billy. It's time to go to lunch." This tells me what you want me to do and what is going to happen next. Now it's much easier for me to comply.
No comment here.
4. I am a concrete thinker. I interpret language literally. It's very confusing for me when you say, "Hold your horses, cowboy!" when what you really mean is "Please stop running." Don't tell me something is a "piece of cake" when there is no dessert in sight and what you really mean is, "This will be easy for you to do." When you say, "It's pouring cats and dogs," I see pets coming out of a pitcher. Please just tell me, "It's raining very hard." Idioms, puns, nuances, double entendres and sarcasm are lost on me.
Actually, many autistics tend towards sarcasm. I think it's the most common form of humor out there :) As for idioms, puns, etc. - the solution is to teach your kids explicitly what those mean, and that they have non-literal meanings. Though it's certainly polite to not talk over somebody's head.
5. Be patient with my limited vocabulary. It's hard for me to tell you what I need when I don't know the words to describe my feelings. I may be hungry, frustrated, frightened or confused, but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation, or other signs that something is wrong.
I'd imagine this is true for people who have a limited vocabulary, so no comment.
There's a flip side to this: I may sound like a little professor or a movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits, because I know I am expected to respond when spoken to. They may come from books, television or the speech of other people. It's called echolalia. I don't necessarily understand the context or the terminology I'm using, I just know it gets me off the hook for coming up with a reply.
ARG! Okay. "sounding like a little professor" is different from echolalia. The first involves knowing what you're talking about, and understanding the words. The other... well, I've never done that, so I'll leave somebody else to comment.
6. Because language is so difficult for me, I am very visually oriented. Show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of patient repetition helps me learn.
I'm not visually oriented (and language isn't difficult for me, but that doesn't matter as I don't think the two things are related). Remember what I said about monolithic people? Yeah, stop it.
A visual schedule is extremely helpful as I move through my day. Like your day planner, it relieves me of the stress of having to remember what comes next, makes for smooth transitions between activities, and helps me manage my time and meet your expectations. Here's a great web site for learning more about visual schedules http://www.cesa7.k12.wi.us/newweb/content/rsn/autism.asp
That's a good idea if it's actually helpful for the person in question. Not everybody is helped by the same things. Can we *please* stop pretending otherwise?
7. Focus and build on what I can do rather than what I can't do. Like any other human, I can't learn in an environment where I'm constantly made to feel that I'm not good enough or that I need fixing. Trying anything new when I am almost sure to be met with criticism, however constructive, becomes something to be avoided. Look for my strengths and you'll find them. There's more than one right way to do most things.
Perfectly sensible.
8. Help me with social interactions. It may look like I don't want to play with the other kids on the playground, but sometimes it's just that I simply don't know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, I may be delighted to be included.
Or I might not. Sometimes, people really *don't* want to play with the other kids on the playground, or would like to play doing anything other than stupid sports.
9. Try to identify what triggers my meltdowns. This is termed "the antecedent." Meltdowns, blowups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented.
More sense. It's hard to dislike the author, because she tries so very hard.
10. If you are a family member, please love me unconditionally. Banish thoughts such as, "If he would just ..." and "Why can't she ... ?" You didn't fulfill every last expectation your parents had for you, and you wouldn't like being constantly reminded of it. I didn't choose to have autism. Remember that it's happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you I'm worth it.
Nobody chooses to be who they are. Can we not imply that the choice would be different if we had a choice?
It all comes down to three words: Patience. Patience. Patience.
Y'know, that's one word, repeated three times :P
Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. I may not be good at eye contact or conversation, but have you noticed I don't lie, cheat at games, tattle on my classmates, or pass judgment on other people?
Confession here: I lie. I don't like to, but I certainly do. Oh, and when growing up, I tattled *all the time*. People do something wrong, they shouldn't. Which I guess is the same as my passing judgment on them.... hm....
You are my foundation. Think through some of those societal rules, and if they don't make sense for me, let them go. Be my advocate, be my friend, and we'll see just how far I can go.
Aw. I think that I've had enough sugar for today now that I've read this.
I probably won't be the next Michael Jordan, but with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.
Or Bill Gates?
They had autism too.
We. Don't. Know. That.
Now, I'll agree that there is a substantial amount of information on Einstein that suggests he was on the spectrum, but no such wealth of resources exists for Mozart or Van Gogh (both of whom, we should remember, died miserable and poor. One of them died crazy).
Wow, I'm pissy today.
Edit: I decided to give this piece a final grade. Except then I didn't know what grade to give. On the one hand, it's really trying hard to encourage more tolerance, and it does have some good advice in there. On the other hand, the author makes the classic mistake of assuming that all people from a group are the same, and has some *serious* vocabulary issues. And, of course, despite lip service to the idea that autism != only bad things, there's really very little indication of this in the piece until the very end - and that's more than balanced by the "your child didn't choose to have autism" and "now we've got some cure ideas" that are in there.
So I can't really grade this. Sorry.
asperger.Ten Things Every Child Person with Autism Wishes You Knew
I know what they mean, but please. Can we stop always talking about "children with autism"? Because children grow up, and become adults, and then are promptly forgotten by the rest of the world.
By Ellen Notbohm
South Florida Parenting
Some days it seems the only predictable thing about it is the unpredictability. The only consistent attribute, the inconsistency. There is little argument on any level but that autism is baffling, even to those who spend their lives around it.
The weather is baffling. Quantum physics is baffling. Quidditch scoring is baffling. The common cold is baffling (if predictable).
The child who lives with autism may look "normal," but his or her behavior can be perplexing and downright difficult.
Not to put too find a point on it, but the behaviour of most kids can be perplexing and downright difficult. Just sayin'....
Today, the citadel of autism, once thought an "incurable" disorder, is cracking around the foundation.
We have a citadel? Since when? I WANNA SEE!!! Does it have a cool name, like "Fortress of DOOM (and Solitude)"?
Yes, I'm being silly. It's a lot easier than going on about "incurable disorder".
Every day, individuals with autism show us they can overcome, compensate for, and otherwise manage many of the condition's most challenging aspects.
That's not the same as a cure.
Equipping those around our children with a simple understanding of autism's most basic elements has a tremendous effect on the children's journey towards productive, independent adulthood.
Well, yes, but... no. I'll leave somebody else to go on and on about the idea of people actually being independant.
Autism is an extremely complex disorder, but we can distill it to three critical components: sensory processing difficulties, speech/language delays and impairments, and whole child/social interaction issues.
Here are 10 things every child with autism wishes you knew.
Oh boy...
1. I am a child with autism. I am not "autistic." My autism is one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)?
But I *am* autistic. Just like I'm (probably) straight (not a person with heterosexuality), smart (not a person with intelligence), and 22 (not a person with 22 years of age, except in certain languages which aren't English). I'm also clumsy, and think that "uncoordinated" is just as bad.
Now, even if I wished to argue that all these things don't define me, I'd still be against the concept of "person-first language". It's stupid. Did you hear me? STUPID. Nobody talks like that. If I'm tall, I'm a tall person, if I'm short, I'm a short person, if I'm white, I'm a white person, if I'm black, I'm a black person, and so on. Messing with the standard word order and making the phrase longer just emphasizes the supposedly "bad" trait instead of my personhood. No, really. So quit it.
2. My sensory perceptions are disordered. This means the ordinary sights, sounds, smells, tastes and touches of everyday life that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you, but I am really just trying to defend myself. A "simple" trip to the grocery store may be hell for me. My hearing may be hyperacute. Dozens of people are talking at once. The loudspeaker booms today's special. Muzak whines from the sound system. Cash registers beep and cough. A coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can't filter all the input, and I'm in overload! My sense of smell may be highly sensitive. The fish at the meat counter isn't quite fresh, the guy standing next to us hasn't showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they're mopping up pickles on Aisle 3 with ammonia. ... I can't sort it all out, I'm too nauseous.
I tend to say that it's not so much that my senses are disordered (I'm not a synesthesiate here) as that other people lack the ability to see/hear/smell properly. That's not your fault, you can't help it.
Because I am visually oriented, this may be my first sense to become overstimulated. The fluorescent light is too bright. It makes the room pulsate and hurts my eyes. Sometimes the pulsating light bounces off everything and distorts what I am seeing. The space seems to be constantly changing. There's glare from windows, moving fans on the ceiling, so many bodies in constant motion, too many items for me to be able to focus - and I may compensate with tunnel vision. All this affects my vestibular sense, and now I can't even tell where my body is in space. I may stumble, bump into things, or simply lay down to try and regroup.
I'm not visually oriented. This is a myth. Many autistics are visually oriented, but that doesn't mean that all autistics are, or that no NTs are. There's no good that comes from pretending that autistics are a monolithic group of people who all perceive things in the same way.
On that subject, not all autistics are hypersensitive to everything. Some are hyposensitive. I am sometimes hypersensitive to touch (don't touch me, I'll jump, might break your nose) but at other times I'm hyposensitive, I end up in the shower trying to figure out where I got this cut or that bruise. I'm torn as to which is better....
3. Please remember to distinguish between won't (I choose not to) and can't (I'm not able to). Receptive and expressive language are both difficult for me. It isn't that I don't listen to instructions. It's that I can't understand you. When you call to me from across the room, this is what I hear: "*&^%$#@, Billy. #$%^*&^%$&*" Instead, come speak directly to me in plain words: "Please put your book in your desk, Billy. It's time to go to lunch." This tells me what you want me to do and what is going to happen next. Now it's much easier for me to comply.
No comment here.
4. I am a concrete thinker. I interpret language literally. It's very confusing for me when you say, "Hold your horses, cowboy!" when what you really mean is "Please stop running." Don't tell me something is a "piece of cake" when there is no dessert in sight and what you really mean is, "This will be easy for you to do." When you say, "It's pouring cats and dogs," I see pets coming out of a pitcher. Please just tell me, "It's raining very hard." Idioms, puns, nuances, double entendres and sarcasm are lost on me.
Actually, many autistics tend towards sarcasm. I think it's the most common form of humor out there :) As for idioms, puns, etc. - the solution is to teach your kids explicitly what those mean, and that they have non-literal meanings. Though it's certainly polite to not talk over somebody's head.
5. Be patient with my limited vocabulary. It's hard for me to tell you what I need when I don't know the words to describe my feelings. I may be hungry, frustrated, frightened or confused, but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation, or other signs that something is wrong.
I'd imagine this is true for people who have a limited vocabulary, so no comment.
There's a flip side to this: I may sound like a little professor or a movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits, because I know I am expected to respond when spoken to. They may come from books, television or the speech of other people. It's called echolalia. I don't necessarily understand the context or the terminology I'm using, I just know it gets me off the hook for coming up with a reply.
ARG! Okay. "sounding like a little professor" is different from echolalia. The first involves knowing what you're talking about, and understanding the words. The other... well, I've never done that, so I'll leave somebody else to comment.
6. Because language is so difficult for me, I am very visually oriented. Show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of patient repetition helps me learn.
I'm not visually oriented (and language isn't difficult for me, but that doesn't matter as I don't think the two things are related). Remember what I said about monolithic people? Yeah, stop it.
A visual schedule is extremely helpful as I move through my day. Like your day planner, it relieves me of the stress of having to remember what comes next, makes for smooth transitions between activities, and helps me manage my time and meet your expectations. Here's a great web site for learning more about visual schedules http://www.cesa7.k12.wi.us/newweb/content/rsn/autism.asp
That's a good idea if it's actually helpful for the person in question. Not everybody is helped by the same things. Can we *please* stop pretending otherwise?
7. Focus and build on what I can do rather than what I can't do. Like any other human, I can't learn in an environment where I'm constantly made to feel that I'm not good enough or that I need fixing. Trying anything new when I am almost sure to be met with criticism, however constructive, becomes something to be avoided. Look for my strengths and you'll find them. There's more than one right way to do most things.
Perfectly sensible.
8. Help me with social interactions. It may look like I don't want to play with the other kids on the playground, but sometimes it's just that I simply don't know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, I may be delighted to be included.
Or I might not. Sometimes, people really *don't* want to play with the other kids on the playground, or would like to play doing anything other than stupid sports.
9. Try to identify what triggers my meltdowns. This is termed "the antecedent." Meltdowns, blowups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented.
More sense. It's hard to dislike the author, because she tries so very hard.
10. If you are a family member, please love me unconditionally. Banish thoughts such as, "If he would just ..." and "Why can't she ... ?" You didn't fulfill every last expectation your parents had for you, and you wouldn't like being constantly reminded of it. I didn't choose to have autism. Remember that it's happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you I'm worth it.
Nobody chooses to be who they are. Can we not imply that the choice would be different if we had a choice?
It all comes down to three words: Patience. Patience. Patience.
Y'know, that's one word, repeated three times :P
Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. I may not be good at eye contact or conversation, but have you noticed I don't lie, cheat at games, tattle on my classmates, or pass judgment on other people?
Confession here: I lie. I don't like to, but I certainly do. Oh, and when growing up, I tattled *all the time*. People do something wrong, they shouldn't. Which I guess is the same as my passing judgment on them.... hm....
You are my foundation. Think through some of those societal rules, and if they don't make sense for me, let them go. Be my advocate, be my friend, and we'll see just how far I can go.
Aw. I think that I've had enough sugar for today now that I've read this.
I probably won't be the next Michael Jordan, but with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.
Or Bill Gates?
They had autism too.
We. Don't. Know. That.
Now, I'll agree that there is a substantial amount of information on Einstein that suggests he was on the spectrum, but no such wealth of resources exists for Mozart or Van Gogh (both of whom, we should remember, died miserable and poor. One of them died crazy).
Wow, I'm pissy today.
Edit: I decided to give this piece a final grade. Except then I didn't know what grade to give. On the one hand, it's really trying hard to encourage more tolerance, and it does have some good advice in there. On the other hand, the author makes the classic mistake of assuming that all people from a group are the same, and has some *serious* vocabulary issues. And, of course, despite lip service to the idea that autism != only bad things, there's really very little indication of this in the piece until the very end - and that's more than balanced by the "your child didn't choose to have autism" and "now we've got some cure ideas" that are in there.
So I can't really grade this. Sorry.
no subject
Date: 2005-02-18 03:55 pm (UTC)I'm torn. I understand and appreciate it if I'm having trouble understanding what they've been saying. Otherwise, though, I can handle complex thoughts. No, really.
Better to just take your individual child into account and tailor your language to their needs.
no subject
Date: 2005-02-18 03:57 pm (UTC)no subject
Date: 2005-02-18 03:59 pm (UTC)