Social Network for Individuals on the Spectrum

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mhughes
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29 Jan 2014, 8:37 pm

I've been a member of National Autism Network (http://www.NationalAutismNetwork.com) for awhile and use it a resource for my daughter who has Aspergers. They recently released a social network for the autism community and there are some really cool features for individuals on the spectrum to connect with others on a local level. Here is the video on vimeo that shows the features- http://vimeo.com/84903239.



dobrolvr
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29 Jan 2014, 9:49 pm

Thanks for the post! I just made a profile :)



Soccer22
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29 Jan 2014, 9:57 pm

awesome! I'm signing up



dobrolvr
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29 Jan 2014, 9:59 pm

Soccer22 wrote:
awesome! I'm signing up


I have the same screen name of 'dobrolvr' on there, if you want to add me. Though, you don't have to feel obligated to or anything. :)



Sweetleaf
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30 Jan 2014, 1:29 pm

I suppose its worth looking into.


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Solitudinarian
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31 Jan 2014, 7:17 am

My first impression is that the site appears to be geared towards neurotypical parents and autistic children, like nearly all autism resources. And as usual when parents and family members are the main focus group of a site, there is a certain "autism speaks" vibe that I, as an independently living, middle-aged aspie, find somewhat patronizing and disturbing. This impression only intensified when I opened one of the featured articles on the portal page and found myself on "Daily Autism", a self-proclaimed "Daily Web Newspaper of the Autism Epidemic" that demonizes vaccines and claims that "mercury triggered the age of autism". Sites of this sort are not something I want to be affiliated with, no matter how remotely.



dobrolvr
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31 Jan 2014, 7:45 am

Solitudinarian wrote:
My first impression is that the site appears to be geared towards neurotypical parents and autistic children, like nearly all autism resources. And as usual when parents and family members are the main focus group of a site, there is a certain "autism speaks" vibe that I, as an independently living, middle-aged aspie, find somewhat patronizing and disturbing. This impression only intensified when I opened one of the featured articles on the portal page and found myself on "Daily Autism", a self-proclaimed "Daily Web Newspaper of the Autism Epidemic" that demonizes vaccines and claims that "mercury triggered the age of autism". Sites of this sort are not something I want to be affiliated with, no matter how remotely.


Agreed. I didn't figure all of that out until after I had already made a profile. There's definitely an underlying Autism Speaks type tone to it, though admittedly, I've "met" some nice fellow spectrumites on there thus far...with that being said, I don't think I'll really keep my profile active as most of it is rather off-putting as you described. :?



Soccer22
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31 Jan 2014, 9:20 am

dobrolvr wrote:
Solitudinarian wrote:
My first impression is that the site appears to be geared towards neurotypical parents and autistic children, like nearly all autism resources. And as usual when parents and family members are the main focus group of a site, there is a certain "autism speaks" vibe that I, as an independently living, middle-aged aspie, find somewhat patronizing and disturbing. This impression only intensified when I opened one of the featured articles on the portal page and found myself on "Daily Autism", a self-proclaimed "Daily Web Newspaper of the Autism Epidemic" that demonizes vaccines and claims that "mercury triggered the age of autism". Sites of this sort are not something I want to be affiliated with, no matter how remotely.


Agreed. I didn't figure all of that out until after I had already made a profile. There's definitely an underlying Autism Speaks type tone to it, though admittedly, I've "met" some nice fellow spectrumites on there thus far...with that being said, I don't think I'll really keep my profile active as most of it is rather off-putting as you described. :?


I'm glad this was brought to my attention, thanks! And I would've added you dobrolvr, but now that we are leaving the site, maybe not.



UIDZINR
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05 Feb 2014, 6:01 pm

dobrolvr wrote:
Solitudinarian wrote:
My first impression is that the site appears to be geared towards neurotypical parents and autistic children, like nearly all autism resources. And as usual when parents and family members are the main focus group of a site, there is a certain "autism speaks" vibe that I, as an independently living, middle-aged aspie, find somewhat patronizing and disturbing. This impression only intensified when I opened one of the featured articles on the portal page and found myself on "Daily Autism", a self-proclaimed "Daily Web Newspaper of the Autism Epidemic" that demonizes vaccines and claims that "mercury triggered the age of autism". Sites of this sort are not something I want to be affiliated with, no matter how remotely.


Agreed. I didn't figure all of that out until after I had already made a profile. There's definitely an underlying Autism Speaks type tone to it, though admittedly, I've "met" some nice fellow spectrumites on there thus far...with that being said, I don't think I'll really keep my profile active as most of it is rather off-putting as you described. :?


I came across this article on their site in an article addressing the autism community ( The story is on their homepage )
Quote:
The National Autism Network was created to provide an environment for every person affected by autism to be able to connect with others, share information, stories, best practices and ultimately learn from each other and their experiences. It is our mission to help unite and empower our community and we ask you as members to open your hearts and your minds and simply listen to each other and other’s points of view. Let’s all work together instead of against each other and make a stronger autism community.


All 'first' impressions aside... we should be supporting communities who have a message like this as opposed to putting them down. The social network part looks verrry promising!! Has anyone else used it yet? I've grown really tired of Facebook and this might just be the answer :thumright:



vickygleitz
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06 Feb 2014, 2:45 pm

I think it sounds beyond awesome. So what if NT parents and their kids get involved? We need to get more involved with them. For one thing, that would be the best way to help these families learn the truth about Autism Speaks. NT parents are not our enemy. Neither are we their enemies. Through the vulnerability caused by the love and concern for their children, so many of them have been deceived. { and yes. I know. I know. I know. Many parents are not good people. But most would do ANYTHING to prevent one drop of suffering for their children, And that,is how autism Speaks hooks them.



cdecandia
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06 Feb 2014, 4:47 pm

Hey Everyone- I saw this thread and I wanted to reach out and 'set the record straight'. I am one of the co-founders of National Autism Network and our intent with this website and for building this social network was for the community to be as inclusive as possible: parents, individuals on the spectrum, family members and providers. By no means are we trying to gear the resources we provide towards one type of person or another. We are also not affiliated with Autism Speaks or any other autism organization. Any information or articles we post is simply just providing the information that is available and allowing our users and members to formulate their own opinions from that information. I'm happy to answer any questions or concerns that anyone has about the site as our goal is to provide value to the entire autism community.



Soccer22
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06 Feb 2014, 6:34 pm

cdecandia wrote:
Hey Everyone- I saw this thread and I wanted to reach out and 'set the record straight'. I am one of the co-founders of National Autism Network and our intent with this website and for building this social network was for the community to be as inclusive as possible: parents, individuals on the spectrum, family members and providers. By no means are we trying to gear the resources we provide towards one type of person or another. We are also not affiliated with Autism Speaks or any other autism organization. Any information or articles we post is simply just providing the information that is available and allowing our users and members to formulate their own opinions from that information. I'm happy to answer any questions or concerns that anyone has about the site as our goal is to provide value to the entire autism community.


Thanks for reaching out and clarifying. I have a question about registering. Why do you need our first and last name and also our address? I know it says that you need our address to match us with people in our area, but doesn't a simple zip code also work? I get a bit uneasy giving out personal info.



cdecandia
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06 Feb 2014, 8:11 pm

Quote:
cdecandia wrote:
Hey Everyone- I saw this thread and I wanted to reach out and 'set the record straight'. I am one of the co-founders of National Autism Network and our intent with this website and for building this social network was for the community to be as inclusive as possible: parents, individuals on the spectrum, family members and providers. By no means are we trying to gear the resources we provide towards one type of person or another. We are also not affiliated with Autism Speaks or any other autism organization. Any information or articles we post is simply just providing the information that is available and allowing our users and members to formulate their own opinions from that information. I'm happy to answer any questions or concerns that anyone has about the site as our goal is to provide value to the entire autism community.


Thanks for reaching out and clarifying. I have a question about registering. Why do you need our first and last name and also our address? I know it says that you need our address to match us with people in our area, but doesn't a simple zip code also work? I get a bit uneasy giving out personal info.


'Soccer22'- I completely understand. The reason there is a name and address within the registration is because for 'enhanced memberships' it would need to match for billing information. For a regular free membership, it's not necessary. The zip code would work for location purposes. I'd be happy to share with you our privacy policy and the site is hosted in a HIPAA Secure environment, but if you're uncomfortable sharing all of that, you can put in a fake street address. I hope this answers your question.



KingdomOfRats
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06 Feb 2014, 8:17 pm

cdecandia wrote:
Hey Everyone- I saw this thread and I wanted to reach out and 'set the record straight'. I am one of the co-founders of National Autism Network and our intent with this website and for building this social network was for the community to be as inclusive as possible: parents, individuals on the spectrum, family members and providers. By no means are we trying to gear the resources we provide towards one type of person or another. We are also not affiliated with Autism Speaks or any other autism organization. Any information or articles we post is simply just providing the information that is available and allowing our users and members to formulate their own opinions from that information. I'm happy to answer any questions or concerns that anyone has about the site as our goal is to provide value to the entire autism community.

thanks for joining and clearing this up.

is there any reason bit defender keeps giving a malware detected page everytime am trying to access the site?
has someone shelled the site? surely am not the only one getting this.


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cdecandia
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06 Feb 2014, 8:25 pm

I've not heard that about bit defender, but thank you for bringing that to my attention. I knew McAfee had us listed as a potential threat in the past because the site was less than a year old. We had made repeated attempts to get them to clear this. Our entire site is hosted in a HIPAA Secure environment which has the same security measures taken by hospitals. I can assure you that no malware lives on the site. We will definitely see what we can do about bit defender. Thanks again.



KingdomOfRats
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06 Feb 2014, 8:34 pm

cdecandia wrote:
I've not heard that about bit defender, but thank you for bringing that to my attention. I knew McAfee had us listed as a potential threat in the past because the site was less than a year old. We had made repeated attempts to get them to clear this. Our entire site is hosted in a HIPAA Secure environment which has the same security measures taken by hospitals. I can assure you that no malware lives on the site. We will definitely see what we can do about bit defender. Thanks again.

hi cdecandia,
thanks for posting so quickly,have hit the ignore button. :)
have seen it happen to a few totaly innocent sites so didnt believe there was anything dodgy going on from the actual network itself,but have also seen similar networks/forums get unknowingly backdoored by hackers.
has the server been checked for shells? coud there be any bad advertisements putting out malware behavior?


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>severely autistic.
>>the residential autist; http://theresidentialautist.blogspot.co.uk
blogging from the view of an ex institutionalised autism/ID activist now in community care.
>>>help to keep bullying off our community,report it!