My e-mail to Autism Speaks
Page 1 of 1 [ 9 posts ]
15 May 2011, 8:08 pm
Here's an e-mail I just wrote to Autism Speaks expressing how I feel about them. Tell me what you think:
As someone on the autistic spectrum I find your organization to be incredibly patronizing and insulting. Instead of encouraging the acceptance and tolerance of people with autism you make it seem like people with autism have something akin to "cooties". Instead of being a group which encourages autistic people to be successful, you seem to talk down to us as if we are all ret*d invalids. Need I remind you that there are MANY people with autism and asperger syndrome who have become incredibly successful in life? Another concern is that you claim to represent people with autism and yet you have no board members who are autistic. Why don't you have autistic staff if you are an organization that represents autistic people? That would be like the NAACP being run by an all white staff, or NOW being run by an all male staff. I am glad to see that less and less people are seeing us as the burden you portray us to be and more as people who are perhaps just a tad different. Perhaps you should rethink your position and what you really stand for. Feel free to respond with any questions or comments.
Mike C***ell
_________________
X
15 May 2011, 8:56 pm
history_of_psychiatry wrote:
Here's an e-mail I just wrote to Autism Speaks expressing how I feel about them. Tell me what you think:
As someone on the autistic spectrum I find your organization to be incredibly patronizing and insulting. Instead of encouraging the acceptance and tolerance of people with autism you make it seem like people with autism have something akin to "cooties". Instead of being a group which encourages autistic people to be successful, you seem to talk down to us as if we are all ret*d invalids. Need I remind you that there are MANY people with autism and asperger syndrome who have become incredibly successful in life? Another concern is that you claim to represent people with autism and yet you have no board members who are autistic. Why don't you have autistic staff if you are an organization that represents autistic people? That would be like the NAACP being run by an all white staff, or NOW being run by an all male staff. I am glad to see that less and less people are seeing us as the burden you portray us to be and more as people who are perhaps just a tad different. Perhaps you should rethink your position and what you really stand for. Feel free to respond with any questions or comments.
Mike C***ell
As someone on the autistic spectrum I find your organization to be incredibly patronizing and insulting. Instead of encouraging the acceptance and tolerance of people with autism you make it seem like people with autism have something akin to "cooties". Instead of being a group which encourages autistic people to be successful, you seem to talk down to us as if we are all ret*d invalids. Need I remind you that there are MANY people with autism and asperger syndrome who have become incredibly successful in life? Another concern is that you claim to represent people with autism and yet you have no board members who are autistic. Why don't you have autistic staff if you are an organization that represents autistic people? That would be like the NAACP being run by an all white staff, or NOW being run by an all male staff. I am glad to see that less and less people are seeing us as the burden you portray us to be and more as people who are perhaps just a tad different. Perhaps you should rethink your position and what you really stand for. Feel free to respond with any questions or comments.
Mike C***ell
I think most agree that Autism Speaks should present an image of how the full range of people with Autism function in life and that having individuals working in the organization are of benefit; they are moving in the direction and we would like to see further improvement in that area.
Your two complaints and suggestions are very reasonable. If presented in a business like manner they are more likely to be taken seriously, though, by the organization, and you are more likely to get a serious reply.
Some Autistic people are a tad bit different, but it is a much more severe problem for others. Both, sides though, need exposure in the media for better public awareness. Much of their awareness campaign has been aimed at Kanner type autism. The improvement will be better awareness of those that function on a higher level with Autism.
The owner of this website, and the author John Robison, both successful people with autism, are now connected with the organization and giving the input of people that function successfully with Autism. The organization appears to be moving in a direction in better response to the core problems you present, thanks to the efforts of people like this.
It presents a better image of people with Autism as a whole when we are able to present our complaints, ideas, and suggestions in a professional manner.
An example:
Autism Speaks:
I see that you have made some improvements in adding Autistic individuals to your organization but would like to see further improvement in your awareness campaign to show the successes and difficulties of people with Autism that are able to function well in life.
While you have added these individuals to your organizations, I believe it will enhance your organization to employ additional individuals with autism in your organization. Their input is extremely important and of value to the success of your organization.
Respectfully,
xxxxxxxxx
If you really want to influence an organization to change; first find something good to say about the organization, and go on to present the needed change in a respectful manner.
While we as Autistic people may not appreciate the way that the organization has treated Autistic people and feel we have been disrespected; it is likely the person that reads your email had nothing to do with those those media representations of autistic people.
A respectful email is one that get's forwarded up to higher levels in the organization for real results, if that is what you aim to achieve.
I delt in customer service for most of my life. The people that read the complaints are human and deal with other humans; when disrespectful complaints come in they don't get near as much attention as the respectful ones. It is just human nature.
16 May 2011, 9:46 pm
aghogday wrote:
history_of_psychiatry wrote:
Here's an e-mail I just wrote to Autism Speaks expressing how I feel about them. Tell me what you think:
As someone on the autistic spectrum I find your organization to be incredibly patronizing and insulting. Instead of encouraging the acceptance and tolerance of people with autism you make it seem like people with autism have something akin to "cooties". Instead of being a group which encourages autistic people to be successful, you seem to talk down to us as if we are all ret*d invalids. Need I remind you that there are MANY people with autism and asperger syndrome who have become incredibly successful in life? Another concern is that you claim to represent people with autism and yet you have no board members who are autistic. Why don't you have autistic staff if you are an organization that represents autistic people? That would be like the NAACP being run by an all white staff, or NOW being run by an all male staff. I am glad to see that less and less people are seeing us as the burden you portray us to be and more as people who are perhaps just a tad different. Perhaps you should rethink your position and what you really stand for. Feel free to respond with any questions or comments.
Mike C***ell
As someone on the autistic spectrum I find your organization to be incredibly patronizing and insulting. Instead of encouraging the acceptance and tolerance of people with autism you make it seem like people with autism have something akin to "cooties". Instead of being a group which encourages autistic people to be successful, you seem to talk down to us as if we are all ret*d invalids. Need I remind you that there are MANY people with autism and asperger syndrome who have become incredibly successful in life? Another concern is that you claim to represent people with autism and yet you have no board members who are autistic. Why don't you have autistic staff if you are an organization that represents autistic people? That would be like the NAACP being run by an all white staff, or NOW being run by an all male staff. I am glad to see that less and less people are seeing us as the burden you portray us to be and more as people who are perhaps just a tad different. Perhaps you should rethink your position and what you really stand for. Feel free to respond with any questions or comments.
Mike C***ell
I think most agree that Autism Speaks should present an image of how the full range of people with Autism function in life and that having individuals working in the organization are of benefit; they are moving in the direction and we would like to see further improvement in that area.
Your two complaints and suggestions are very reasonable. If presented in a business like manner they are more likely to be taken seriously, though, by the organization, and you are more likely to get a serious reply.
Some Autistic people are a tad bit different, but it is a much more severe problem for others. Both, sides though, need exposure in the media for better public awareness. Much of their awareness campaign has been aimed at Kanner type autism. The improvement will be better awareness of those that function on a higher level with Autism.
The owner of this website, and the author John Robison, both successful people with autism, are now connected with the organization and giving the input of people that function successfully with Autism. The organization appears to be moving in a direction in better response to the core problems you present, thanks to the efforts of people like this.
It presents a better image of people with Autism as a whole when we are able to present our complaints, ideas, and suggestions in a professional manner.
An example:
Autism Speaks:
I see that you have made some improvements in adding Autistic individuals to your organization but would like to see further improvement in your awareness campaign to show the successes and difficulties of people with Autism that are able to function well in life.
While you have added these individuals to your organizations, I believe it will enhance your organization to employ additional individuals with autism in your organization. Their input is extremely important and of value to the success of your organization.
Respectfully,
xxxxxxxxx
If you really want to influence an organization to change; first find something good to say about the organization, and go on to present the needed change in a respectful manner.
While we as Autistic people may not appreciate the way that the organization has treated Autistic people and feel we have been disrespected; it is likely the person that reads your email had nothing to do with those those media representations of autistic people.
A respectful email is one that get's forwarded up to higher levels in the organization for real results, if that is what you aim to achieve.
I delt in customer service for most of my life. The people that read the complaints are human and deal with other humans; when disrespectful complaints come in they don't get near as much attention as the respectful ones. It is just human nature.
You make very valid points. Thanks for the suggestions.
_________________
X
17 May 2011, 1:07 am
history_of_psychiatry wrote:
aghogday wrote:
history_of_psychiatry wrote:
Here's an e-mail I just wrote to Autism Speaks expressing how I feel about them. Tell me what you think:
As someone on the autistic spectrum I find your organization to be incredibly patronizing and insulting. Instead of encouraging the acceptance and tolerance of people with autism you make it seem like people with autism have something akin to "cooties". Instead of being a group which encourages autistic people to be successful, you seem to talk down to us as if we are all ret*d invalids. Need I remind you that there are MANY people with autism and asperger syndrome who have become incredibly successful in life? Another concern is that you claim to represent people with autism and yet you have no board members who are autistic. Why don't you have autistic staff if you are an organization that represents autistic people? That would be like the NAACP being run by an all white staff, or NOW being run by an all male staff. I am glad to see that less and less people are seeing us as the burden you portray us to be and more as people who are perhaps just a tad different. Perhaps you should rethink your position and what you really stand for. Feel free to respond with any questions or comments.
Mike C***ell
As someone on the autistic spectrum I find your organization to be incredibly patronizing and insulting. Instead of encouraging the acceptance and tolerance of people with autism you make it seem like people with autism have something akin to "cooties". Instead of being a group which encourages autistic people to be successful, you seem to talk down to us as if we are all ret*d invalids. Need I remind you that there are MANY people with autism and asperger syndrome who have become incredibly successful in life? Another concern is that you claim to represent people with autism and yet you have no board members who are autistic. Why don't you have autistic staff if you are an organization that represents autistic people? That would be like the NAACP being run by an all white staff, or NOW being run by an all male staff. I am glad to see that less and less people are seeing us as the burden you portray us to be and more as people who are perhaps just a tad different. Perhaps you should rethink your position and what you really stand for. Feel free to respond with any questions or comments.
Mike C***ell
I think most agree that Autism Speaks should present an image of how the full range of people with Autism function in life and that having individuals working in the organization are of benefit; they are moving in the direction and we would like to see further improvement in that area.
Your two complaints and suggestions are very reasonable. If presented in a business like manner they are more likely to be taken seriously, though, by the organization, and you are more likely to get a serious reply.
Some Autistic people are a tad bit different, but it is a much more severe problem for others. Both, sides though, need exposure in the media for better public awareness. Much of their awareness campaign has been aimed at Kanner type autism. The improvement will be better awareness of those that function on a higher level with Autism.
The owner of this website, and the author John Robison, both successful people with autism, are now connected with the organization and giving the input of people that function successfully with Autism. The organization appears to be moving in a direction in better response to the core problems you present, thanks to the efforts of people like this.
It presents a better image of people with Autism as a whole when we are able to present our complaints, ideas, and suggestions in a professional manner.
An example:
Autism Speaks:
I see that you have made some improvements in adding Autistic individuals to your organization but would like to see further improvement in your awareness campaign to show the successes and difficulties of people with Autism that are able to function well in life.
While you have added these individuals to your organizations, I believe it will enhance your organization to employ additional individuals with autism in your organization. Their input is extremely important and of value to the success of your organization.
Respectfully,
xxxxxxxxx
If you really want to influence an organization to change; first find something good to say about the organization, and go on to present the needed change in a respectful manner.
While we as Autistic people may not appreciate the way that the organization has treated Autistic people and feel we have been disrespected; it is likely the person that reads your email had nothing to do with those those media representations of autistic people.
A respectful email is one that get's forwarded up to higher levels in the organization for real results, if that is what you aim to achieve.
I delt in customer service for most of my life. The people that read the complaints are human and deal with other humans; when disrespectful complaints come in they don't get near as much attention as the respectful ones. It is just human nature.
You make very valid points. Thanks for the suggestions.
Your welcome. I think positive change is starting to occur in the organization, and the reasonable aspect of your input along with that of many others may make a difference in making life better for autistic people like yourself in the future.
17 May 2011, 6:30 am
OP as aghogday says I think they were founded by people with children with Kanners or 'Classic Autism' (like my child) I don't think they will be replying to your email because I think to them a person who can use email is not Autistic by their definition of the word which is different from yours or the wider one used in the DSM. Essentially I see them as an organisation that aims to address the impact of severe Autism, going about it the way they understand.
17 Jun 2011, 12:27 pm
I just got a reply from Autism Speaks about the email I sent them. Here it is:
""Hi Mike,
Thanks for your email. Sorry it took me a little while to respond to you.
Sorry also that you have that opinion of us. All I can say is that we certainly don’t mean to talk down to anyone. We’re well aware that there are many people on the spectrum who have become successful, and as a matter of fact we work with many of them. John Robison for example, who as one of the leading voices in the space I’m sure you’re familiar with, is on our science advisory board, and many, many others. We recently hired a full time staff person who’s on the spectrum, and we’ve worked a good deal with many others over the last few years. Just last month we hired Alex Plank to report for us from IMFAR in San Diego.
We believe very strongly that by raising awareness, funding research that helps us better understand autism, fighting passionately for insurance reform and so on, the overall effect is to benefit the entire community. That’s certainly our goal. Having said that, I would love to hear from you if you have specific thoughts on how we could be doing better. I can’t promise that we’ll be able to do everything you want us to, but I will certainly commit to making sure your opinion is heard here.
Best,
Kai
Autism Speaks""
_________________
X
17 Jun 2011, 1:32 pm
history_of_psychiatry wrote:
I just got a reply from Autism Speaks about the email I sent them. Here it is:
""Hi Mike,
Thanks for your email. Sorry it took me a little while to respond to you.
Sorry also that you have that opinion of us. All I can say is that we certainly don’t mean to talk down to anyone. We’re well aware that there are many people on the spectrum who have become successful, and as a matter of fact we work with many of them. John Robison for example, who as one of the leading voices in the space I’m sure you’re familiar with, is on our science advisory board, and many, many others. We recently hired a full time staff person who’s on the spectrum, and we’ve worked a good deal with many others over the last few years. Just last month we hired Alex Plank to report for us from IMFAR in San Diego.
We believe very strongly that by raising awareness, funding research that helps us better understand autism, fighting passionately for insurance reform and so on, the overall effect is to benefit the entire community. That’s certainly our goal. Having said that, I would love to hear from you if you have specific thoughts on how we could be doing better. I can’t promise that we’ll be able to do everything you want us to, but I will certainly commit to making sure your opinion is heard here.
Best,
Kai
Autism Speaks""
""Hi Mike,
Thanks for your email. Sorry it took me a little while to respond to you.
Sorry also that you have that opinion of us. All I can say is that we certainly don’t mean to talk down to anyone. We’re well aware that there are many people on the spectrum who have become successful, and as a matter of fact we work with many of them. John Robison for example, who as one of the leading voices in the space I’m sure you’re familiar with, is on our science advisory board, and many, many others. We recently hired a full time staff person who’s on the spectrum, and we’ve worked a good deal with many others over the last few years. Just last month we hired Alex Plank to report for us from IMFAR in San Diego.
We believe very strongly that by raising awareness, funding research that helps us better understand autism, fighting passionately for insurance reform and so on, the overall effect is to benefit the entire community. That’s certainly our goal. Having said that, I would love to hear from you if you have specific thoughts on how we could be doing better. I can’t promise that we’ll be able to do everything you want us to, but I will certainly commit to making sure your opinion is heard here.
Best,
Kai
Autism Speaks""
Sounds like a very respectful, reasonable response. They seem very willing to listen to the opinion of others.
17 Jun 2011, 2:59 pm
nostromo wrote:
Definately seem to have morphed from where they started from. Has a parallel to my own understanding and opinion of autism.
Yes, it appears they are morphing into an organization that should provide a common balance in the opinion of some people. Hopefully people will be open to the idea that they can and are changing into an organization that is more helpful to everyone on the spectrum.
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