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BazzaMcKenzie
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30 Dec 2012, 7:12 pm

Someone I know has a 10 year old recently diagnosed and the NT mother is posting a heap of stuff about autism and the kid on facebook.

Do you think broadcasting to the world your kid has AS is a good thing?

I don't. But I have never had a good reaction to telling anyone about AS.

Do psychs tell parents that they should tell everyone? I would have thought not putting a label on kids would be better.


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raisedbyignorance
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30 Dec 2012, 9:12 pm

Parents and social networking - A terrible terrible combination...a recipe for disaster. Especially if it's a social network so public as Facebook. I don't mind the mom joining in autism discussion groups and the like but I think she should really be cautious about ANYTHING she posts about her children because her children will more than likely have a Facebook of their own soon enough. I really think that the kid should have a say in whether or not he wants the whole Facebook world to know that he has AS. I don't think it's a good idea either.

Now suppose if it's brought up in conversation of if someone asks, then I suppose one would be honest and just say yes. But there's no need to preach it to the world unless there is a real necessity to.



LittleBlackCat
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30 Dec 2012, 9:20 pm

Having a 10 year old myself if she were to be diagnosed I would regard her as owning that information. There are a few people that would need to know (e.g. her class teacher), other than that it would be up to her to decide who to tell. I would probably encourage her to take some time to understand things herself before she told others and think about what some of the possible reactions might be (good or bad) and how she might feel / what she might do about them. Broadcasting to the world - no.

Incidentally, these are things I have given some thought to recently as having raised a few concerns with the school they have arranged an assessment with an ed psych (although I have not mentioned AS specifically). Not sure yet whether anything will come of it. My husband is convinced she is just eccentric, despite making occasional statements about thinking she had autism as a toddler (long before I knew anything about it), and gets angry if I suggest otherwise so I am trying to find the right way to tell him about the assessment at the moment (I did not realise they were going to arrange it, I was just having a chat with the head in the context of some bullying issues and transition planning for secondary school).



DW_a_mom
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30 Dec 2012, 9:39 pm

People forget (or just don't know) how easily shared everything on Facebook is. Parents commonly post about their kid's issues on FB; not to say it is right, just to say it is common.

Some parents are aware of the lack of privacy and go public on purpose hoping that the information sharing will help them help their child, and allow them to help others at the same time. With some kids this is fine; with others it isn't. We can only hope that the parents have an attitude and stance that is compatible with what their unique child needs.

I've been a lot more circumspect because I am aware that my son doesn't want to be public knowledge, but there are times it has been mentioned. My FB is private, however, and I don't allow sharing beyond my immediate friends.

Still, reality is that none of us have quite as much privacy as we think we do, no matter how careful we think we are. Quite a few people take the position that you may as well go with it, and be out of the pretense of privacy from the start. I hear that from a lot of very tech savvy people; it's an interesting position.


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eric76
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30 Dec 2012, 10:05 pm

raisedbyignorance wrote:
Parents and social networking - A terrible terrible combination...a recipe for disaster.


I like that. Those words would make a great bumper sticker. Or the caption on a poster related to the topic.



MMJMOM
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30 Dec 2012, 10:16 pm

I dont social network...but if I did, I wouldnt write anything personal about my kids.


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theWanderer
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30 Dec 2012, 10:44 pm

DW_a_mom wrote:
I've been a lot more circumspect because I am aware that my son doesn't want to be public knowledge, but there are times it has been mentioned. My FB is private, however, and I don't allow sharing beyond my immediate friends.


If you're seriously trying to keep this private, you should know that the most "private" FB post is hardly private. There are multiple ways such information gets out - and it is also now in the hands of the data-miners. For the rest of his life, your son will be tagged as on the spectrum in all the huge, institutional databases. (This is not paranoia - Target already developed an algorithm so effective they were mailing a teenage girl ads for baby products even before her parents knew she was pregnant. In that case, the information was based solely on her purchases. Which were not baby items as such. Merely other items Target's algorithm was able to identify as fitting a pattern of purchases made by pregnant women. If I recall correctly, I think one data point had to do with skin lotion.)

What most people don't understand is that services like Facebook are free because you are the product. Yes, they sell ads - but there is also a huge profit in data, and if you read the TOS carefully, they can use data gleaned from your profile in many ways. (Remember, their lawyers drew up those TOS. I still remember a sample publishing contract I read, before I understood how these things worked. It looked good to me - but when I read the breakdown of how those clauses actually worked together in practice, it might as well have been an agreement to become the publisher's slave. Most laymen cannot follow all the implications buried within legal language.)

I'm not saying you weren't sincerely trying to protect your son's privacy. What I am saying is that you failed - because so few people really understand how these new forms of interaction work. (I actually worked briefly on the fringes of social media. Before that, I was a professional genealogist - which gave me an interest in and an appreciation of the ways in which information can be used or misused.)


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League_Girl
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30 Dec 2012, 11:56 pm

No different than a parent going around and telling people in person her kid has it, same as calling people on the phone and telling them. My mom did the same thing for a while. Now today we have social networks so people now pretty much go on there to share the news and post announcements. But the thing is if a parent doesn't have their FB set to private, kids from your child's school could stumble across the page and see it.


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ASDMommyASDKid
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31 Dec 2012, 9:19 am

I don't share anything other than with the school (who diagnosed him) and his pediatrician, who suggested diagnosis. When my son is old enough to understand the diagnosis, he can share the information if he wants to, but if asked I will probably encourage him not to.

We are not in a sympathetic location, and my in-laws think everything is caused by spoiling children and not whacking them when they are non compliant. I am sympathetic to those that think that sharing the information reduces the stigma for all, but I do not have that luxury; and I do not feel like it is my information to share.



Gnomey
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31 Dec 2012, 10:35 am

A lot of people will use their child's diagnosis to bring attention to themselves or have something to talk about. This is my opinion from having been on an online Mom's forum but I haven't seen it so much on Facebook. Not just with autism but with other medical conditions as well. Actually the ones with other suspect medical conditions are usually worse then the ones with the autism. If anything parents with kids on the autism spectrum tend to downplay the diagnosis. I think most people don't like announcing their child's delays.

Unless of course, the child outgrows the symptoms of autism (never had it) but it is reported that their child beat autism with a special diet.

Both my kids have a chronic medical condition and one is an aspie so I know a little on this.


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Tequila
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31 Dec 2012, 11:15 am

BazzaMcKenzie wrote:
Someone I know has a 10 year old recently diagnosed and the NT mother is posting a heap of stuff about autism and the kid on facebook.

Do you think broadcasting to the world your kid has AS is a good thing?

I don't. But I have never had a good reaction to telling anyone about AS.

Do psychs tell parents that they should tell everyone? I would have thought not putting a label on kids would be better.


Bloody hell, you're a blast from the past aintcha?

Why aren't you back here more often, mate? Where you been?! :D



theWanderer
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31 Dec 2012, 12:15 pm

League_Girl wrote:
No different than a parent going around and telling people in person her kid has it, same as calling people on the phone and telling them. My mom did the same thing for a while. Now today we have social networks so people now pretty much go on there to share the news and post announcements. But the thing is if a parent doesn't have their FB set to private, kids from your child's school could stumble across the page and see it.


Sorry, actually, it is very different. Posting something on FB - even if set to private - is a more public and more permanent way of "tagging" that person with a label than just about anything else you could do - even renting a billboard to announce it. (At least, once the billboard was taken down, many people would forget. Stuff that gets into the big digital databases never goes away. I've researched this. Even techniques that "bury" information from casual web searchers do absolutely nothing about the data points in those databases.)

Although the exact implications vary - FB is one of the more richly "mined" sites, for obvious reasons as well as the fact FB makes money selling data - posting anything anywhere on the web should be done with caution. It is the rough equivalent of carving it into ten thousand stone tablets and scattering them around the world. You will never get that information back. (A forum like this one is much safer than FB, much more private - but the only real protection we have is that: first, any forum is harder to mine for data unless the owners specifically provide access, and, second, this isn't a place where those with the money to spare are likely to find enough data of use to them to bother. But what everyone forgets is that, while your friends or your parents or whoever might not find what you posted in an obscure corner of the web because it's buried amid too much other stuff, there are bots which can gulp up all that information, digest it, and sort every bit of it into a database in a very short time.)

Of all the places on the web, just about the worst you could choose, from a privacy standpoint, is FB. At least at the moment. Whatever tool "everyone" (or a significant fraction of everyone) is using - and all the ones they've used in the past - will be just as poor a choice. The reality of sharing information has changed radically, but our society has not yet adjusted its understanding of what's involved to keep up.


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League_Girl
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31 Dec 2012, 1:24 pm

But why does it matter if bots have it or FB company has that information stored? Are people going to still see it who know you or your child? Some people may still remember what they see on a billboard and someone can still take a photo of it and keep forever.


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theWanderer
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31 Dec 2012, 2:05 pm

League_Girl wrote:
But why does it matter if bots have it or FB company has that information stored? Are people going to still see it who know you or your child? Some people may still remember what they see on a billboard and someone can still take a photo of it and keep forever.


Every company that ever deals with your child as an adult - for the rest of their life - will know this. That's the difference. Customer support reps may be able (depending on the company - and also on what policies they set in the future) may be able to call this up when your child is on the phone with them. And so on.

Yes, you could take a photo and keep it forever. But - pre-digital - copying that photo and spreading it to others would be difficult and time consuming. You probably wouldn't bother. Now, snagging data from FB is so easy, it costs an infinitesimal amount to grab each snippet (the profits are in how all those drops add up...).


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AQ Test = 44 Aspie Quiz = 169 Aspie 33 NT EQ / SQ-R = Extreme Systematising
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Not all those who wander are lost.
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In the country of the blind, the one eyed man - would be diagnosed with a psychological disorder


aann
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31 Dec 2012, 2:07 pm

I'm not on facebook b/c it would be time consuming. Thanks for giving me more reason to avoid it!



Kailuamom
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31 Dec 2012, 2:27 pm

theWanderer wrote:
League_Girl wrote:
B

ut why does it matter if bots have it or FB company has that information stored? Are people going to still see it who know you or your child? Some people may still remember what they see on a billboard and someone can still take a photo of it and keep forever.


Every company that ever deals with your child as an adult - for the rest of their life - will know this. That's the difference. Customer support reps may be able (depending on the company - and also on what policies they set in the future) may be able to call this up when your child is on the phone with them. And so on.

Yes, you could take a photo and keep it forever. But - pre-digital - copying that photo and spreading it to others would be difficult and time consuming. You probably wouldn't bother. Now, snagging data from FB is so easy, it costs an infinitesimal amount to grab each snippet (the profits are in how all those drops add up...).


Forgive me for being technologically stupid but......how is my kid forever followed based on my posts about whatever? I mean, I have posted pictures of him on stage with famous musicians, he's not getting ads for tour bus companies or alcohol....

I mean seriously, by what mechanism is he specifically followed based upon what I put on my Facebook page? Not that it matters, but he has a common first/last name combo.