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Don't Pity Me
Jul 24, 2008 07:07AM
- 16 comments
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I always find it odd when people talk about pain associated with autism. To me it's equivalent to the pain of having no wings. A bird may look down on us people and think, what a shame it is these creatures can't fly. They can't soar in the air and feel the air pushing under their wings or the air rushing around them. They don't get to see the tops of things or spot the smallest bug a mile away. Those humans must really be suffering in the eyes of a bird.
I have seen birds fly. I can look up at a bird and think wow it would be neat to fly. I can long for wings like I did at a time in my late childhood. I can even choose to grieve that I am not a bird, but that is pointless. I am a human. Humans don’t have wings, but they have gifts that birds lack. After all isn’t it us looking up at the birds, wondering if they must be suffering to not have our brainpower?
If I wasn't led to believe by society I was lacking certain things, I would never be aware of it. If there weren't people pitying me saying, you must be suffering, the thought would never cross my mind. If I wasn't treated different, I would never think I was different. If people didn’t behave like I had a disability, I would not think I ever was disabled.
This is sort of a rough draft of something that came to mind. I’m not sure if I got my point across, but I tried. This thought in various forms comes to mind whenever people come up to me or another person who is born differently abled and expresses their pity. Pitying an autistic (or any other perceived handicapped) person is like a bird pitying a human for not having wings or a person pitying a bird for not having our brain.
I have seen birds fly. I can look up at a bird and think wow it would be neat to fly. I can long for wings like I did at a time in my late childhood. I can even choose to grieve that I am not a bird, but that is pointless. I am a human. Humans don’t have wings, but they have gifts that birds lack. After all isn’t it us looking up at the birds, wondering if they must be suffering to not have our brainpower?
If I wasn't led to believe by society I was lacking certain things, I would never be aware of it. If there weren't people pitying me saying, you must be suffering, the thought would never cross my mind. If I wasn't treated different, I would never think I was different. If people didn’t behave like I had a disability, I would not think I ever was disabled.
This is sort of a rough draft of something that came to mind. I’m not sure if I got my point across, but I tried. This thought in various forms comes to mind whenever people come up to me or another person who is born differently abled and expresses their pity. Pitying an autistic (or any other perceived handicapped) person is like a bird pitying a human for not having wings or a person pitying a bird for not having our brain.
I've never pitied you for being autistic. That would be an insult. Your analogy is great. It doesn't sound like you are lacking anything important. Autism has been badly represented. I always thought autistic people had everything coming in - to their brains - and it was overwhelming. Takes a lot of getting used to if you are taking EVERYTHING in (sorry, didn't mean to shout). It seems to be you are taking everything that "comes in" and using it in a creative way. And I'm sure I sense your emotions, even on the computer.
TTYL
wolf
TTYL
wolf
No you haven't pitied me, lonewolf07. Don't worry. But I do see it happen, not just to me, but sometimes others as well. I understand the people mean well and they feel the need to connect with the individual, but unfortunately go about it in a way that can be viewed offensive to the person being pitied. I don't blame such individuals, because I also know the media is good at eliciting pity. Just see any good pr video on the news. They may be talking about someone, their struggles and especially with autism, show the child having a meltdown. Then they go to the parent having a meltdown. Oprah had some feature about autism for autism awareness month... I didn't watch it, but I read some of the synopses on the web. I felt offended.
Just like Autism Speaks, they chose to go for the pity path. They feature the worst case people at the worst times showing how bad it seems. I have nothing wrong with the bad aspects of autism being shown, but I'd like to see it balanced out. If we're going to show meltdowns, let's show in the same show some scenes from autistic individuals who've found ways to prevent or cope with meltdowns. Let's shift the image of autism from one of pity and needing sympathy to one that is more positive, encouraging. I believe these are very intelligent people, even if not every one of them is able to speak their thoughts.
That should be one primary focus if any, to help autistic people become able to express their thoughts and also change the way society looks at/treats autism. Once that’s done, I believe much of the negative stuff will become manageable. If there is any one thing I really suffer it is being misunderstood.
The “EVERYTHING” coming in is probably low latent inhibition you're referring to. I found this article interesting awhile ago.
http://www.sciencedaily.com/releases/2003/10/031001061055.htm
http://www.ncbi.nlm.nih.gov/pubmed/14498785?dopt=Abstract
Just like Autism Speaks, they chose to go for the pity path. They feature the worst case people at the worst times showing how bad it seems. I have nothing wrong with the bad aspects of autism being shown, but I'd like to see it balanced out. If we're going to show meltdowns, let's show in the same show some scenes from autistic individuals who've found ways to prevent or cope with meltdowns. Let's shift the image of autism from one of pity and needing sympathy to one that is more positive, encouraging. I believe these are very intelligent people, even if not every one of them is able to speak their thoughts.
That should be one primary focus if any, to help autistic people become able to express their thoughts and also change the way society looks at/treats autism. Once that’s done, I believe much of the negative stuff will become manageable. If there is any one thing I really suffer it is being misunderstood.
The “EVERYTHING” coming in is probably low latent inhibition you're referring to. I found this article interesting awhile ago.
http://www.sciencedaily.com/releases/2003/10/031001061055.htm
http://www.ncbi.nlm.nih.gov/pubmed/14498785?dopt=Abstract
I am sorry people pity you. Pity is not good... it's too bad people can't understand and be compassionate without the pity portion. But, well, humans are sinful and make lots of errors... so I guess all we can do is pray for them that they become better people. So, ha ha ha... you can pity them back. Um, okay that's not exactly Christian mentality either... but, it's kind of humorous.
I don't tell anyone my daughter was diagnosed with PDD and on the spectrum, outside of family members. Or on the forum where people don't know who we are in real life. I told a couple people in one mom's group I'm in (big mistake), and they kept saying they were sorry about it, and how tragic it was to fnd out and that I must be grieving. I got very upset. I still don't know what all these people think I'm supposed to be grieving about. And no, I am not in denial like someone else thinks I am. I also don't want people to look at my daughter differently, at least for the time being. When it comes to a time when it might help people understand her better, I'll tell them then. For now, she's just a late talker with a few developmental issues but who's also a very happy and content child.
Anyways, um, back to you... people shouldn't pity you. You are a wonderful person, are very caring, write very eloquently, and your artwork and fiction work is unbelievably good, at least the ants that I've seen. I hope I haven't come across as "pitying" in anyway. I am sorry if I have. Sometimes I say things or write things without thinking. My mom used to say I have "foot in mouth" disease. Maybe these people have it too... Maybe they just don't know what to say, and that their words of pity is what they are "programmed" to say by society.
It's also admirable you don't want to be pitied. That is strength of character. An older man where my husband works (I think he's in his 70s) has MS. I stopped in for lunch one day with my husband and popped my head in to say hi to the man, and when I asked him how he was doing he was in a bad mood and said "I'm in a wheel chair and I have to have someone help me around, how do you think I'm doing?" I think he wanted to be pitied, but all I could think of telling him was "You're alive, talking, and getting around even if it is in a wheelchair.... being alive must be better than the alternative?" He laughed in a good way and said I was right. I guess it snapped him out of his self-pity phase for the day. I go through self-pity phases myself. So do other people. But then I go through the stop pitying me phase, which sometimes confuses people because they're probably thinking "you know the other week you were complaining about how horrible blah blah blah was and now you don't want the sympathy?" Well, anyways, I know that is entirely different than having a "label" that you have to live with, like autism or MS. I have lupus, but that's something I can hide from most people. I guess I don't want people to pity me about the lupus thing. I just want them to understand, heh, I have limits on my activity levels (if I do too much I get really sick) and what my joints can do on some days. Pity is a step up from hatred though. One of my husband's old friends (doesn't see him anymore because he lives far away and also because I refuse to go visit) used to do stuff with us before we had kids. he was completely uncaring about my limits or the fact that I had limits. And he knew why. Instead he'd go out of his way, or at least it seemed like it, to do things and make a big deal that I couldn't keep up or do the activity. I found him very very hateful towards me. I think he wanted his friend to have a better spouse or something. Someone who was healthy and social and outgoing, and who was in to the whole party scene which I am completely opposite from. My husband isn't into parties either, but his friend is. I guess he had an entire lack of pity or caring for anybody. Another thing is that it seems people only want to understand something when it suits their needs to, not all the time. But, you are right, pity is not a good thing. Regardless of what it is people are pitying you about. Understanding, compassion, and brotherly love is what the world needs.
I don't tell anyone my daughter was diagnosed with PDD and on the spectrum, outside of family members. Or on the forum where people don't know who we are in real life. I told a couple people in one mom's group I'm in (big mistake), and they kept saying they were sorry about it, and how tragic it was to fnd out and that I must be grieving. I got very upset. I still don't know what all these people think I'm supposed to be grieving about. And no, I am not in denial like someone else thinks I am. I also don't want people to look at my daughter differently, at least for the time being. When it comes to a time when it might help people understand her better, I'll tell them then. For now, she's just a late talker with a few developmental issues but who's also a very happy and content child.
Anyways, um, back to you... people shouldn't pity you. You are a wonderful person, are very caring, write very eloquently, and your artwork and fiction work is unbelievably good, at least the ants that I've seen. I hope I haven't come across as "pitying" in anyway. I am sorry if I have. Sometimes I say things or write things without thinking. My mom used to say I have "foot in mouth" disease. Maybe these people have it too... Maybe they just don't know what to say, and that their words of pity is what they are "programmed" to say by society.
It's also admirable you don't want to be pitied. That is strength of character. An older man where my husband works (I think he's in his 70s) has MS. I stopped in for lunch one day with my husband and popped my head in to say hi to the man, and when I asked him how he was doing he was in a bad mood and said "I'm in a wheel chair and I have to have someone help me around, how do you think I'm doing?" I think he wanted to be pitied, but all I could think of telling him was "You're alive, talking, and getting around even if it is in a wheelchair.... being alive must be better than the alternative?" He laughed in a good way and said I was right. I guess it snapped him out of his self-pity phase for the day. I go through self-pity phases myself. So do other people. But then I go through the stop pitying me phase, which sometimes confuses people because they're probably thinking "you know the other week you were complaining about how horrible blah blah blah was and now you don't want the sympathy?" Well, anyways, I know that is entirely different than having a "label" that you have to live with, like autism or MS. I have lupus, but that's something I can hide from most people. I guess I don't want people to pity me about the lupus thing. I just want them to understand, heh, I have limits on my activity levels (if I do too much I get really sick) and what my joints can do on some days. Pity is a step up from hatred though. One of my husband's old friends (doesn't see him anymore because he lives far away and also because I refuse to go visit) used to do stuff with us before we had kids. he was completely uncaring about my limits or the fact that I had limits. And he knew why. Instead he'd go out of his way, or at least it seemed like it, to do things and make a big deal that I couldn't keep up or do the activity. I found him very very hateful towards me. I think he wanted his friend to have a better spouse or something. Someone who was healthy and social and outgoing, and who was in to the whole party scene which I am completely opposite from. My husband isn't into parties either, but his friend is. I guess he had an entire lack of pity or caring for anybody. Another thing is that it seems people only want to understand something when it suits their needs to, not all the time. But, you are right, pity is not a good thing. Regardless of what it is people are pitying you about. Understanding, compassion, and brotherly love is what the world needs.
I found the offending video that I was looking for that I've been refering to...
http://www.whatkindofworlddoyouwant.com/videos/view/id/408214
This is the stuff the media puts out about autism... This is the image of autism that agencies like Autism Speaks wants you to see about autism. It disgusts me...
The parts I took the most offense at were:
1. "I want a world where Autism is something we read about in History Books."
I think they mean the non-verbal poster child who their autism appears to be in the way of their life... At least in the mainstream's view. Which still can be taken offensively depending on the point of view you take. Even some nonverbal "severly" autistic people may take offense at that comment. In my honest opinion, I wish they would have just left that quote out. The video could be just as effective without that rude comment.
If they really wanted to make some things history, it would be more effective to say lack of communication should be history. Misunderstanding should be history. Meltdowns should be made history. (key is to understand what triggers a meltdown. Likely it's not much different than what upsets a non autistic person, only the autistic person may have a harder time communicating what is stressing them. That should be worked on.) Maybe even comments like that one could be something made history. That I'd like. Let's make this anti autism view something made history...
2. "In the mean time we could do nothing and allow her slip further away..." I understand this is a charaty and propaganda video. The idea is to push legislation and insurance companies to fund early intervention. Thahat's a noble cause. One I agree with. I question what Autism Speaks means by "therapies" strictly based on their point of view, but I'll let that slide and assume the speech programs, which are helpfu. What I take offense at is the "If we don't do it now, there's nothing that can be done and your child will be ruined for life" kind of implication...
I believe there are things parents can do. Even just work with the child and encourage them to speak or engage in activities would go places. II believe the parential support is very important and far from "nothing" as Autism Speaks would like everyone to believe.
Other nitpicks (paraphrased):
- despirately hoping the child will catch up
The child will catch up, but may at their own pace. In fact they may catch up quickly and exceed their peers in some areas. The overall view that the child will forever be behind is kind of a stereotype... (refer to my PDD NOS journal)
-more cases than diabeties, aids, and cancer combined: This statistic may very well be true. What I don't like is the idea of combining some unrelated stereotypically dreaded terminal illnesses and place them next to autism. If any of you (my audience) has one of the above conditions, feel free to share the offended feeling.
- unfortunately she was 3 before being diagnosed: My dad took a shot at this. He said that's when autism starts to develop. I think this particular arguement is there to either imply something about the environment or something... Maybe it's the same kind of message that the "slipping away" comment is trying to portray. once again reminds me strongly of those 1 day only sales on the tv... If you miss your chance, you miss the deal. I don't believe it's like that with humans. That's a very pessimistic attitude.
- Left unable to convey basic needs, left guessing what she needs: It's true to an extent, but once again not everyone. It likely plays with the communication problems. With help, one can learn to recognize what they need and exspress it. But then again I don't know. maybe it's just the way it's worded bothers me than the message itself.
- Unable to tell the family she loves them: Maybe people out there don't realize one doesn't have to say "I love you" to express their love. I may not always say those words or feel the stereotypical "gooy-ooy" feeling...but I feel secure and I value those I bond with. Isn't that expressing love? I don't think I'm alone. I'm sure many autistic children express their love in other ways than what may be stereotypical... It takes understanding.
So there you have it... My flaming not spell checked, typo laiden opinion. I'll hop off my soapbox and have dinner...lol.
http://www.whatkindofworlddoyouwant.com/videos/view/id/408214
This is the stuff the media puts out about autism... This is the image of autism that agencies like Autism Speaks wants you to see about autism. It disgusts me...
The parts I took the most offense at were:
1. "I want a world where Autism is something we read about in History Books."
I think they mean the non-verbal poster child who their autism appears to be in the way of their life... At least in the mainstream's view. Which still can be taken offensively depending on the point of view you take. Even some nonverbal "severly" autistic people may take offense at that comment. In my honest opinion, I wish they would have just left that quote out. The video could be just as effective without that rude comment.
If they really wanted to make some things history, it would be more effective to say lack of communication should be history. Misunderstanding should be history. Meltdowns should be made history. (key is to understand what triggers a meltdown. Likely it's not much different than what upsets a non autistic person, only the autistic person may have a harder time communicating what is stressing them. That should be worked on.) Maybe even comments like that one could be something made history. That I'd like. Let's make this anti autism view something made history...
2. "In the mean time we could do nothing and allow her slip further away..." I understand this is a charaty and propaganda video. The idea is to push legislation and insurance companies to fund early intervention. Thahat's a noble cause. One I agree with. I question what Autism Speaks means by "therapies" strictly based on their point of view, but I'll let that slide and assume the speech programs, which are helpfu. What I take offense at is the "If we don't do it now, there's nothing that can be done and your child will be ruined for life" kind of implication...
I believe there are things parents can do. Even just work with the child and encourage them to speak or engage in activities would go places. II believe the parential support is very important and far from "nothing" as Autism Speaks would like everyone to believe.
Other nitpicks (paraphrased):
- despirately hoping the child will catch up
The child will catch up, but may at their own pace. In fact they may catch up quickly and exceed their peers in some areas. The overall view that the child will forever be behind is kind of a stereotype... (refer to my PDD NOS journal)
-more cases than diabeties, aids, and cancer combined: This statistic may very well be true. What I don't like is the idea of combining some unrelated stereotypically dreaded terminal illnesses and place them next to autism. If any of you (my audience) has one of the above conditions, feel free to share the offended feeling.
- unfortunately she was 3 before being diagnosed: My dad took a shot at this. He said that's when autism starts to develop. I think this particular arguement is there to either imply something about the environment or something... Maybe it's the same kind of message that the "slipping away" comment is trying to portray. once again reminds me strongly of those 1 day only sales on the tv... If you miss your chance, you miss the deal. I don't believe it's like that with humans. That's a very pessimistic attitude.
- Left unable to convey basic needs, left guessing what she needs: It's true to an extent, but once again not everyone. It likely plays with the communication problems. With help, one can learn to recognize what they need and exspress it. But then again I don't know. maybe it's just the way it's worded bothers me than the message itself.
- Unable to tell the family she loves them: Maybe people out there don't realize one doesn't have to say "I love you" to express their love. I may not always say those words or feel the stereotypical "gooy-ooy" feeling...but I feel secure and I value those I bond with. Isn't that expressing love? I don't think I'm alone. I'm sure many autistic children express their love in other ways than what may be stereotypical... It takes understanding.
So there you have it... My flaming not spell checked, typo laiden opinion. I'll hop off my soapbox and have dinner...lol.
Very interesting take on autism, and if you can't critique these authors, who can??? I read an interesting article on autism when I was stranded in the Miami airport a couple of months ago. I think it was either in Wired or Psychology Today. (I am an eclectic reader, especially when stranded in an airport.) I'm going to see if I can find it on line and if I do, I'll send you the link. Enjoy your dinner; I'm off to shower and bed.....lots of long work hours these days. Take care and I'll look for the article; I think you'd enjoy it.
http://www.wired.com/medtech/health/magazine/16-03/ff_autism
Okay, I found it --- let me know what you think, okay? I am REALLY interested to hear your take on this woman's story.
Okay, I found it --- let me know what you think, okay? I am REALLY interested to hear your take on this woman's story.
Yeah, I can see why you are offended. What do you think of that Jenny McCarthy book? It must make you pretty livid like those web sites. Someone bought that book for me. Pages were too rough to use for toilet paper so I gave it back to her. LOL...
This is why I hate labeling. It lends to classifying people by their "illnesses" and mentally segregating them into subclasses of lesser human beings.
Essentially, I meet a person and they fall into one of two categories. Dumb@sses and not Dumb@sses. Friendship develop (or doesn't) from there. :)
Essentially, I meet a person and they fall into one of two categories. Dumb@sses and not Dumb@sses. Friendship develop (or doesn't) from there. :)
I'm glad to see most people share my viewpoint. Too rough for toilet paper...wow. I haven't bothered to read her book. There's enough cr@p in this world to make my blood boil... Just read Autism Speak's goal and mission statement...
http://www.autismspeaks.org/goals.php
"At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders.
We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.
Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle.
Autism Speaks. It's time to listen."
Well.... I am Autistic and I am Speaking. This goal statement is certainly not speaking for me! Has it ever occurred to them that some of the "missing pieces" may be somewhere in their head? Okay more seriously the puzzle I see on my end is why people like these see me as such a puzzle... I can't speak for the nonverbal person, but I can speak for myself and if you want to know a "piece" of the puzzle, I'll gladly answer to the best of my ability. Granted you're best asking several autistic people so they can give a "piece" of their mind...
As far as I know there are no autistic people on their board, which I find a bit disconcerting for an organization that claims to be "Speaking" for Autism... Hmm... I don't know about you, but if there is an organization based around a certain group of people, I'd kinda think that it would be a no brainer to have, well...I don't know...a board of autistic people directing and expressing their concerns. After all isn't that what's most important?
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FriaryGrad, I saw that article and I really enjoyed it. Before then I had a strong hunch that many non-verbal autistic people can think and speak in their head, but may not be able to express it verbally. Amanda Baggs has a nice blog too. I'm a bit saddened when she mentioned that she was verbal and gave up because no one took her seriously. (At least that was the impression I got in her video), but that's her decision. There were times I got upset and wished I would suddenly lose the ability to speak, but I never was serious about it... I much rather continue using my strengths and not act even if that means I get weird blank looks when I say I am autistic. I can't say whether or not Amanda is acting more severe than she is. I honestly don't know. I don't even try to push further because it's pointless to make up things based on lack of knowledge.
I just know there is another nonverbal autistic person out there who claims Amanda is taking points from her life story and exploiting it. I personally don't know who is right, so I just leave it at that and respect both individuals. Either way both people helped prove a point that yes, just because someone may be non-verbal doesn't mean they have nothing to say. Out of respect for those autistic people who seem to have a dispute, I don't pass around much of Amanda's statements anymore claiming they are scientific fact. I really do want to know more about the issue between those two individuals and find out who is right, but as far as the point of view I take, it doesn't change much. Either way, both autistic people's stories have much to share and prove the point that just because someone may not look attentive and may not speak, doesn't mean they aren't an intelligent person.
To be fair there are some individuals, autistic that wish they could be cured of their autism. They take a very dim view of people who advocate against a cure. I'm sure they may take even some of my statements offensive, but tis life. Not all people are going to agree. After all, I'm sure in other communities based on conditions, you're not gonna find people sitting in a circle singing koom-bi-a and holding hands all the time... No... Not realistic.
To be honest when I read statements from those who talk about their autism in a negative light and advocating a cure, I can't disagree with many of the points they bring up. I find it interesting that the points the individuals bring up are the very same points I want to see changes in the way society treats people like us. Some of those reasons for wanting a cure are being unable to fit in, hold jobs, being reliant on SSI. These are things I don't like either.
A pro cure person seems to me, that they want to change themselves to fit into society and live as a "normal" person. (Whatever normal is?)
An anti cure person seems to me to want society to change things and make important accommodations. Change society, not the individual.
I stand somewhere in-between. I want to see what can be done for each individual to help them build their strengths and use those strengths to build up and overcome their individual weaknesses. A lot of change will have to come from society, but at the same time I can't just sit around hoping the world to conform to me. There has to be middle ground. Each has to do with their part.
To those advocating cure, I love to ask them this:
What things are you hoping a cure will do for you and what can be done to improve these, even if such a cure may not happen? Or: What things can be changed to make life better without involving a cure? (And they can’t give lame answers like “remove the autism” “make life easier” and such. They have to be as specific as possible.) I like to get people brainstorming and working for ways that don’t involve a cure to make life better.
I use that same question for parents wishing for their child to be cured, only instead of asking them directly I ask what they want for their child.
It seems to me when I lurk such places, the parents get treated very much like the autistic individuals. They get isolated from their friends/family and misunderstood… If the two sides could just work together on a common goal, which seems to be remove the aversion that the mainstream views autism, and help see autism in a better view than something to be dreaded and feared...
Savas, lol. That's pretty much it isn't it. ;) Only thing is I think I fall into both categories depending on my mood for the hour and "what side of bed" I woke up that day, lol.
http://www.autismspeaks.org/goals.php
"At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders.
We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.
Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle.
Autism Speaks. It's time to listen."
Well.... I am Autistic and I am Speaking. This goal statement is certainly not speaking for me! Has it ever occurred to them that some of the "missing pieces" may be somewhere in their head? Okay more seriously the puzzle I see on my end is why people like these see me as such a puzzle... I can't speak for the nonverbal person, but I can speak for myself and if you want to know a "piece" of the puzzle, I'll gladly answer to the best of my ability. Granted you're best asking several autistic people so they can give a "piece" of their mind...
As far as I know there are no autistic people on their board, which I find a bit disconcerting for an organization that claims to be "Speaking" for Autism... Hmm... I don't know about you, but if there is an organization based around a certain group of people, I'd kinda think that it would be a no brainer to have, well...I don't know...a board of autistic people directing and expressing their concerns. After all isn't that what's most important?
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FriaryGrad, I saw that article and I really enjoyed it. Before then I had a strong hunch that many non-verbal autistic people can think and speak in their head, but may not be able to express it verbally. Amanda Baggs has a nice blog too. I'm a bit saddened when she mentioned that she was verbal and gave up because no one took her seriously. (At least that was the impression I got in her video), but that's her decision. There were times I got upset and wished I would suddenly lose the ability to speak, but I never was serious about it... I much rather continue using my strengths and not act even if that means I get weird blank looks when I say I am autistic. I can't say whether or not Amanda is acting more severe than she is. I honestly don't know. I don't even try to push further because it's pointless to make up things based on lack of knowledge.
I just know there is another nonverbal autistic person out there who claims Amanda is taking points from her life story and exploiting it. I personally don't know who is right, so I just leave it at that and respect both individuals. Either way both people helped prove a point that yes, just because someone may be non-verbal doesn't mean they have nothing to say. Out of respect for those autistic people who seem to have a dispute, I don't pass around much of Amanda's statements anymore claiming they are scientific fact. I really do want to know more about the issue between those two individuals and find out who is right, but as far as the point of view I take, it doesn't change much. Either way, both autistic people's stories have much to share and prove the point that just because someone may not look attentive and may not speak, doesn't mean they aren't an intelligent person.
To be fair there are some individuals, autistic that wish they could be cured of their autism. They take a very dim view of people who advocate against a cure. I'm sure they may take even some of my statements offensive, but tis life. Not all people are going to agree. After all, I'm sure in other communities based on conditions, you're not gonna find people sitting in a circle singing koom-bi-a and holding hands all the time... No... Not realistic.
To be honest when I read statements from those who talk about their autism in a negative light and advocating a cure, I can't disagree with many of the points they bring up. I find it interesting that the points the individuals bring up are the very same points I want to see changes in the way society treats people like us. Some of those reasons for wanting a cure are being unable to fit in, hold jobs, being reliant on SSI. These are things I don't like either.
A pro cure person seems to me, that they want to change themselves to fit into society and live as a "normal" person. (Whatever normal is?)
An anti cure person seems to me to want society to change things and make important accommodations. Change society, not the individual.
I stand somewhere in-between. I want to see what can be done for each individual to help them build their strengths and use those strengths to build up and overcome their individual weaknesses. A lot of change will have to come from society, but at the same time I can't just sit around hoping the world to conform to me. There has to be middle ground. Each has to do with their part.
To those advocating cure, I love to ask them this:
What things are you hoping a cure will do for you and what can be done to improve these, even if such a cure may not happen? Or: What things can be changed to make life better without involving a cure? (And they can’t give lame answers like “remove the autism” “make life easier” and such. They have to be as specific as possible.) I like to get people brainstorming and working for ways that don’t involve a cure to make life better.
I use that same question for parents wishing for their child to be cured, only instead of asking them directly I ask what they want for their child.
It seems to me when I lurk such places, the parents get treated very much like the autistic individuals. They get isolated from their friends/family and misunderstood… If the two sides could just work together on a common goal, which seems to be remove the aversion that the mainstream views autism, and help see autism in a better view than something to be dreaded and feared...
Savas, lol. That's pretty much it isn't it. ;) Only thing is I think I fall into both categories depending on my mood for the hour and "what side of bed" I woke up that day, lol.
I just wanted to let you know that i am really amazed at your post and saddened by my naive ways. Autism is only presented to the world showing the worst cases. i saw Jenny M on Oprah and i have a problem with that sort of stuff anyway. They bring actresses or actors out to promote their causes and they want our pity. I honestly did not know an austic person could talk, read or write. That is how naive i have been. Thank you for writing this and letting this girl know there is another side of the story. I plan on paying more attention from now on. Thank you again. sara
Your wings are your imagination, let it take flight with the bird.. Pity is for ourselves when we fail to understand. lesa
Oh and I have another... It gets better >:)
Autism Speaks again... Must they always be the brunt of my critisism? I guess if annyone is gonna speak for autism, they better do it right and speak for all with autism and not just what they think they are speaking for! Or even better yet let the autistic people speak. Not everyone can speak verbally or knows how to type, but that's something I'd like to see that agency work at. Let's help autistic people to speak in whatever ways they can to share their needs.
Presenting Autism Everyday:
http://www.autismspeaks.org/sponsoredevents/autism_every_day.php
and my letter to the editors:
I like towards the end when the parents talk about not giving up and working with their children. I believe that kind of persistence and determination will go a lot further than anything else. As an autistic individual (diagnosed PDD NOS at age 6) I believe there is a lot of self will it takes as well as support from the parents. It helps to have a high self esteem and a positive outlook. But I'm glad my parents took a different approach. Rather than working against my autism, they worked with it and helped get me connected with other individuals with autism that have a positive viewpoint. That positive viewpoint helped get me through Jr. High and high school and make the honor roll.
As far as the rest of the video. I see comments about why is my child melting down? I too had meltdowns like some of those. If you really want to know ask me. I may not be able to say exactly why your kid is melting down, but I may be able to help explain what triggered meltdowns with me. There may be some things in common. I'm willing to help share my piece of the puzzle. Some of the meltdowns were anxiety based. For instance if I couldn't find x item, and I felt like I'd be late, that would stress me out. It also helped to have some item to carry with me. (Usually as an adult I take my sketchbook with my drawings and some paintings. As a kid, it was often a bug I caught outside that would be a comfort item.) Shopping trips: My mom liked to shop at various places and run several errands in one day. Some of the stops were good, but others were boring. If I was being taken to a place I didn't like, I drug my heels in... Going to a place I like…chances are I behaved much better… I also sort of had a “what’s in it for me” attitude. If I was going on a long trip I wanted to come home with a “one thing”. If I had that incentive I behaved much better. I also don't like just spontaneously disrupting whatever I was doing and going places. I like to know ahead of time where I am going and for how long. Imagine you’re in the middle of a game, full concentration and no chance to pause it. Suddenly you’re expected to just drop everything and go… Leaving something I am highly concentrated on, unfinished to me feels like leaving the house with the lights on, doors wide open, and the faucets running. It doesn’t feel natural. I like to be warned ahead of time and know when to find a good stopping point with whatever I am doing.
Other meltdowns were tactile. I didn't like my arm being held onto. If my parents tried to hold my wrist, I'd try to break free. Eventually we worked out some kind of agreement. "I won't hold your wrist if you don't wander." I think it helped. I still got distracted at times, but I knew not to bolt out into the street without looking for cars. I had an autistic-like step grandpa who taught me that behavior and insisted upon it every time before crossing a street.
Coping with meltdowns: I'm learning to spot my triggers and cut them off at the pass. If I feel my anxiety level rising and I'm in an argument, it's time for me to back off and come back later when calmer. If you're a parent and your kid is having a meltdown out of frustration, it's time for a break. See if you can direct the child to something they enjoy to cool down. Approach the task later.
Hopefully some of this helps. I want to see more of the positive ends of autism and more shown on the gifts along with the meltdowns. I'd like to see a more balanced view of all autism. Not just the poster children. It shows some autism, but just like some people criticize the autism advocates, this video doesn't reflect the full view of autism for everyone. Not every parent with a nonverbal 2-3 year old will have a nonverbal older child or adult. I didn’t start to speak until about age 4, but once I got to talking, they couldn’t shut me up. Now I’m highly verbal. Most people just from looking at me wouldn’t guess I am autistic. That goes to show there’s a lot more to PDD NOS and autism than what is shown. There needs to be more shown on both ends so autism is not viewed as something to be feared...
Sincerely
MJI
(the version I sent via email may have been tweaked slightly, and it has my first name and initial) I tried my best to be as non contfrontational as possible (which was really hard considering, 6:15-6:32, 10:38, 11:01, 11:30 and likely other parts I missed)
If the editors don't put my viewpoint of the movie up on their site....hmmm....yeah...that's all I have to say...
Autism Speaks again... Must they always be the brunt of my critisism? I guess if annyone is gonna speak for autism, they better do it right and speak for all with autism and not just what they think they are speaking for! Or even better yet let the autistic people speak. Not everyone can speak verbally or knows how to type, but that's something I'd like to see that agency work at. Let's help autistic people to speak in whatever ways they can to share their needs.
Presenting Autism Everyday:
http://www.autismspeaks.org/sponsoredevents/autism_every_day.php
and my letter to the editors:
I like towards the end when the parents talk about not giving up and working with their children. I believe that kind of persistence and determination will go a lot further than anything else. As an autistic individual (diagnosed PDD NOS at age 6) I believe there is a lot of self will it takes as well as support from the parents. It helps to have a high self esteem and a positive outlook. But I'm glad my parents took a different approach. Rather than working against my autism, they worked with it and helped get me connected with other individuals with autism that have a positive viewpoint. That positive viewpoint helped get me through Jr. High and high school and make the honor roll.
As far as the rest of the video. I see comments about why is my child melting down? I too had meltdowns like some of those. If you really want to know ask me. I may not be able to say exactly why your kid is melting down, but I may be able to help explain what triggered meltdowns with me. There may be some things in common. I'm willing to help share my piece of the puzzle. Some of the meltdowns were anxiety based. For instance if I couldn't find x item, and I felt like I'd be late, that would stress me out. It also helped to have some item to carry with me. (Usually as an adult I take my sketchbook with my drawings and some paintings. As a kid, it was often a bug I caught outside that would be a comfort item.) Shopping trips: My mom liked to shop at various places and run several errands in one day. Some of the stops were good, but others were boring. If I was being taken to a place I didn't like, I drug my heels in... Going to a place I like…chances are I behaved much better… I also sort of had a “what’s in it for me” attitude. If I was going on a long trip I wanted to come home with a “one thing”. If I had that incentive I behaved much better. I also don't like just spontaneously disrupting whatever I was doing and going places. I like to know ahead of time where I am going and for how long. Imagine you’re in the middle of a game, full concentration and no chance to pause it. Suddenly you’re expected to just drop everything and go… Leaving something I am highly concentrated on, unfinished to me feels like leaving the house with the lights on, doors wide open, and the faucets running. It doesn’t feel natural. I like to be warned ahead of time and know when to find a good stopping point with whatever I am doing.
Other meltdowns were tactile. I didn't like my arm being held onto. If my parents tried to hold my wrist, I'd try to break free. Eventually we worked out some kind of agreement. "I won't hold your wrist if you don't wander." I think it helped. I still got distracted at times, but I knew not to bolt out into the street without looking for cars. I had an autistic-like step grandpa who taught me that behavior and insisted upon it every time before crossing a street.
Coping with meltdowns: I'm learning to spot my triggers and cut them off at the pass. If I feel my anxiety level rising and I'm in an argument, it's time for me to back off and come back later when calmer. If you're a parent and your kid is having a meltdown out of frustration, it's time for a break. See if you can direct the child to something they enjoy to cool down. Approach the task later.
Hopefully some of this helps. I want to see more of the positive ends of autism and more shown on the gifts along with the meltdowns. I'd like to see a more balanced view of all autism. Not just the poster children. It shows some autism, but just like some people criticize the autism advocates, this video doesn't reflect the full view of autism for everyone. Not every parent with a nonverbal 2-3 year old will have a nonverbal older child or adult. I didn’t start to speak until about age 4, but once I got to talking, they couldn’t shut me up. Now I’m highly verbal. Most people just from looking at me wouldn’t guess I am autistic. That goes to show there’s a lot more to PDD NOS and autism than what is shown. There needs to be more shown on both ends so autism is not viewed as something to be feared...
Sincerely
MJI
(the version I sent via email may have been tweaked slightly, and it has my first name and initial) I tried my best to be as non contfrontational as possible (which was really hard considering, 6:15-6:32, 10:38, 11:01, 11:30 and likely other parts I missed)
If the editors don't put my viewpoint of the movie up on their site....hmmm....yeah...that's all I have to say...
MJI: I read all your posts but think you summed it up best, when you said: "Whatever 'normal' is." I work at a large, Carnegie Level 3 research university with many Nobel laureates, and other famous artists and researchers, almost none of whom I would classify as "normal." Meltdowns??? I could tell you about meltdowns; all it takes to bring one on is to tell some of these people, "I'm sorry, federal law says you can't do that." But if they are living the life they want to live, who am I to try to "cure" them? I mean I would like to make a few suggestions along the lines of "grow up" but I never do, of course. So I'd say if you're being true to yourself and living the life you want to live, then what could you possibly be "cured" from? You're a great writer........
FriaryGrad, thanks. And if I'm not living the life I want to live I can work ways to change it. That's another thing I poke at when people wish for a "cure"... It's like...why don't I just feel like all is hopeless no matter what I try and hope that science will change me later? That's not a fun way to live... That sets one up to be depressed...
I can't remember offhand but I think it was 10:38, 11:01 where there are two parents speaking about losing their dreams, that their kid will never have a boyfriend, never get married, never this that... How does she know? It may or may not be true, but to decide that right there before giving it a chance, no wonder she's struggling... Combine those statements and skip to around 11:30 when one parent speaks the world see's their children as retarded (implying pretty well that she knows her child is intelligent), they'll show the world, science will find a cure in the future... Ummm... That kind of defeatist thinking will of course make it harder for the parent and the child, especially if she's saying those things, he's having such a hard time, never gonna live a normal life...etc right in front of the kid... Autistic children are not as deaf as they seem... On another forum I was reading a post from a member who was nonverbal for a good portion of her childhood. She grew up hearing such comments from her mother and it hurt her. She ended up with a rough life and some bad relationships. Even so she was trying to advocate autism and say hey...just like I'm trying to do... She said that her mother's words affected her deeply and she is trying to help parents not make those mistakes.
So yeah, if any of my audience (including lurkers who may not have registered with medhelp) happen read this and be guilty of saying such things in front of their autistic child, even if they aren't verbal, it's time to stop. It's not too late. A bit of positive thinking and speaking goes a long way.
I can't remember offhand but I think it was 10:38, 11:01 where there are two parents speaking about losing their dreams, that their kid will never have a boyfriend, never get married, never this that... How does she know? It may or may not be true, but to decide that right there before giving it a chance, no wonder she's struggling... Combine those statements and skip to around 11:30 when one parent speaks the world see's their children as retarded (implying pretty well that she knows her child is intelligent), they'll show the world, science will find a cure in the future... Ummm... That kind of defeatist thinking will of course make it harder for the parent and the child, especially if she's saying those things, he's having such a hard time, never gonna live a normal life...etc right in front of the kid... Autistic children are not as deaf as they seem... On another forum I was reading a post from a member who was nonverbal for a good portion of her childhood. She grew up hearing such comments from her mother and it hurt her. She ended up with a rough life and some bad relationships. Even so she was trying to advocate autism and say hey...just like I'm trying to do... She said that her mother's words affected her deeply and she is trying to help parents not make those mistakes.
So yeah, if any of my audience (including lurkers who may not have registered with medhelp) happen read this and be guilty of saying such things in front of their autistic child, even if they aren't verbal, it's time to stop. It's not too late. A bit of positive thinking and speaking goes a long way.
Hi MJIthewriter!
I'm a mom with an 18 year old son with Asperger's and a NT, 25 year old daughter. I shudder to think of how hurt those children must have been hearing their parents say those things about them. I also shudder to think that I might have said something that my son understood before I knew what he could understand. That's true for NT kids as well.
Everyday we all learn more about Asperger's and Autism. When I first began to notice that our son was unusual there were only a few books about autism in the bookstore. It's just amazing to see what's available now, but there is also so much conflict and disagreement about ASD. I feel overwhelmed by what I do know and what I don't know, should we have done this type of therapy--or that--or none at all...?
We parents dream and worry about ALL of our kids, however the road is a little more rough for my son than it was for my daughter. He really wants to have friends but his NT peers don't ever ask him to do anything with them. They're nice enough to him, they respect his great intelligence and artistic gifts, but he seems a few years behind them in social maturity. And he drives them crazy when he goes on and on about a topic. He knows he shouldn't but sometimes it seems like it's a compulsion.
We're very proud of him and have worked hard to not let others change or crush his unique spirit, but there are aspects of Asperger's that get in the way and sometimes make life painful for him. I think that's where some people may feel sympathy for a young man like my son. However, we have seen how far he has come and the challenges he has conquered. I've tried to never assume that he won't be able to do this or that, but still, I feel terrible when I see him wanting something like a few guy friends to hang out with, or a girlfriend, or to be able to learn how to drive so he can be more independent. Will he be able to support himself, live on his own, have a wife? Those are things he wants but will he be able to have them? Time will tell--but how can we help get him there?
We live in the Twin Cities, like you, so maybe you have some suggestions.
Thanks for your wonderful posts!
g
I'm a mom with an 18 year old son with Asperger's and a NT, 25 year old daughter. I shudder to think of how hurt those children must have been hearing their parents say those things about them. I also shudder to think that I might have said something that my son understood before I knew what he could understand. That's true for NT kids as well.
Everyday we all learn more about Asperger's and Autism. When I first began to notice that our son was unusual there were only a few books about autism in the bookstore. It's just amazing to see what's available now, but there is also so much conflict and disagreement about ASD. I feel overwhelmed by what I do know and what I don't know, should we have done this type of therapy--or that--or none at all...?
We parents dream and worry about ALL of our kids, however the road is a little more rough for my son than it was for my daughter. He really wants to have friends but his NT peers don't ever ask him to do anything with them. They're nice enough to him, they respect his great intelligence and artistic gifts, but he seems a few years behind them in social maturity. And he drives them crazy when he goes on and on about a topic. He knows he shouldn't but sometimes it seems like it's a compulsion.
We're very proud of him and have worked hard to not let others change or crush his unique spirit, but there are aspects of Asperger's that get in the way and sometimes make life painful for him. I think that's where some people may feel sympathy for a young man like my son. However, we have seen how far he has come and the challenges he has conquered. I've tried to never assume that he won't be able to do this or that, but still, I feel terrible when I see him wanting something like a few guy friends to hang out with, or a girlfriend, or to be able to learn how to drive so he can be more independent. Will he be able to support himself, live on his own, have a wife? Those are things he wants but will he be able to have them? Time will tell--but how can we help get him there?
We live in the Twin Cities, like you, so maybe you have some suggestions.
Thanks for your wonderful posts!
g
Interesting. It's a small world after all, lol. Are you in Minneapolis or St. Paul? Please pm me to answer that one.
There is a support group in St. Paul but I'd like to find someone to go with rather than go alone. I also know of a good local independent living center. I can let you know what building that is.
About friends, to be honest I don't really try to put effort in making friends with NT's. If the friendship happens then it happens.That's great. I have nothing against NT's, but it just works out that way. I find pretty good results making friends with people in the disAbility community. They tend to be more open, respectful and overall more understanding. They don't have to be autistic. I have one friend who has some brain damage. We meet at the social gatherings and if I can find organized events or organize something, I can invite her over. I don't have much luck with friendships outside organizing activities. Same with phone conversations. I find myself bored and prone to monologuing... Or in a phone conversation, creating a lot of dead air space when I run out of things to say. But for instance the 4th of July, that went well because we could be doing something while talking. (watching the fountains and firecrackers my dad and I brought).
Either it's my autism, being an introvert, or both, but I tend to get satisfaction with little. I'm fine with aquaintences that I can converse with and internet friends. Though if I move out on my own, I'm sure this may change, because after all I am human and can't live as a hermit... Some people can, but probably not me...
There is a support group in St. Paul but I'd like to find someone to go with rather than go alone. I also know of a good local independent living center. I can let you know what building that is.
About friends, to be honest I don't really try to put effort in making friends with NT's. If the friendship happens then it happens.That's great. I have nothing against NT's, but it just works out that way. I find pretty good results making friends with people in the disAbility community. They tend to be more open, respectful and overall more understanding. They don't have to be autistic. I have one friend who has some brain damage. We meet at the social gatherings and if I can find organized events or organize something, I can invite her over. I don't have much luck with friendships outside organizing activities. Same with phone conversations. I find myself bored and prone to monologuing... Or in a phone conversation, creating a lot of dead air space when I run out of things to say. But for instance the 4th of July, that went well because we could be doing something while talking. (watching the fountains and firecrackers my dad and I brought).
Either it's my autism, being an introvert, or both, but I tend to get satisfaction with little. I'm fine with aquaintences that I can converse with and internet friends. Though if I move out on my own, I'm sure this may change, because after all I am human and can't live as a hermit... Some people can, but probably not me...
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