Mixing Facebook Privacy and Asperger’s Paranoia

Last week my friend “Maria” called me asking for advice. She told me the following story and I wanted to share it with you. I’ll change some non-significant details for her privacy. I’ll note that I’m neither an expert in Facebook privacy details, nor in Asperger’s syndrome — but have  familiarity with both. The purpose of sharing this story is to raise awareness of how we sometimes miss the obvious when it comes to the promise of technology.

Maria told me that her 20-something year old son “Eric” has a mild form of Asperger’s syndrome (AS) which affects his ability to socialize with his peer group.  I shared with her that I’m somewhat familiar with AS, and I know people with it.

Note: AS, like other disorders related to autism seem to manifest in a spectrum of capabilities.   Some people are quite able to adapt well, they are just a bit quirky and sometimes don’t seem to “get it” in social situations.  Others have more severe behavioral issues that impact their ability to function independently in society.  Moreover, many people with AS also suffer from other physiological disorders — making things  much more complicated.

Maria continued:  Eric had been using Facebook as a way to develop better social relationships with people.  He’s a bit more comfortable on the computer than in person.  It gives him the ability to think through what he wants to say — which seems to be helpful.  But things started to get pretty bad for Eric, and Maria wanted to know if I could help her figure some things out.

Here’s where the story takes off in to the unexpected:  Eric started to converse with people about politics, and he started to express his opinions about various political parties, President Obama, and other charged social topics.  And this baited some harsh opposing responses resulting in a sharply negative set of interactions.  You might know that this devolution of debate is typical for faceless internet chatrooms and discussion forums.  They follow Goodwin’s Law and Benford’s Law and other similar observations — that make us realize the limitation of their benefit.  (Doesn’t seem to stop people from insisting on sending me long-winded multi-threaded emails in the faint hope that I’ll suddenly change my mind on some deep-seated issue.  Oh well.)  Eric was not very equipped to handle the level of debate and became very scared.  In addition to Asperger’s, he suffers from fits of paranoia too.  And this event set him off course.

To make matters worse, he started to read about Facebook Privacy issues.  The mix of fact and fear brewed to create a sense in his mind that he is in big trouble.  The FBI is probably going to take him away for insulting the president.  Facebook is going to sell his data to someone in the political mafia to target him with emails, ads, or prevent him from getting a job. And there’s nothing he could do about it.  Even erasing his Facebook account will still not cause the data to be erased from the database archives.  And where is that database anyway?  It’s probably in the “cloud” — and thus some hacker would get to it before the FBI does.  His paranoia fueled by Facebook’s policies caused him significant problems — so much so, his parents took him to a local mental hospital for treatment.

The physician there noted that they are seeing more and more patients that have Facebook related symptoms.  My jaw was still dropped, but that last line made it drop even further.  The doctor actually contacted a member of Congress to advocate for more government oversight on Facebook-induced mental conditions.  Of course, no one at Facebook intends any harm.  But if doctors are noticing a pattern, it’s important to provide feedback and consider if there are things people (or Facebook) can do about this.

This is not a funny story, by the way.  Eric’s reaction is a result of mental disorders — something that should evoke our compassion and concern.  Maria (his mom) is  unsure if she has any recourse with Facebook.  She asks me — is there anyone she could speak to at Facebook? Does she need  legal help? Can she ask that the Facebook records be purged?  Is there any way to tell Facebook that they are giving McLean Hospital more business — and this is a problem!?

We spoke at length about some of these issues and some facts regarding data privacy regulations and practices — hoping that this might help — but also knowing that people with paranoia sometime take comfort that they are paranoid — since they feel they are being self-protecting.  And they take discomfort at attempts to reducing their paranoia with getting too many facts.  This is a tricky area — one for professionals.

I asked where Eric is now.  Turns out his parents found a program for him in a rural-area therapeutic ranch/farm — where he can help with chores, socialize with other like him, and work with therapists in a somewhat secluded area — “off the grid” in a natural, but facilitated setting.  He’s doing well.

What does this all mean?  I’m reminded of the Comcast Tiger Commercial — where the message is “Just because you are using digital voice, your phone calls won’t change.”  Technology is a medium for human interaction — and yes, it can help in many ways.  But for those people who have real challenges with human interaction, they have to work though those challenges first.  Facebook socializing might have sounded like a good idea for Eric, but in retrospect, he was not really equipped for it.  Facebook might have afforded some benefit, but Eric had more to overcome in understanding how to interact in the quasi public/private space online — a space where privacy and consumer rights are not yet well understood.

Eric is doing well in the ranch.  This implies that if Eric were to have an online social experience, it should be in a setting that is like the ranch.  A setting that is secluded, protected, and guided by professionals who can help.  I hope such private social networks exist for people like him.  As society becomes more aware of the reality that part of our population have different needs, we’ll be better able to provide these groups with what they need, rather than assuming that we’ll all fit into one large social network.

Related links that you might find interesting.

• http://digiphile.wordpress.com/2010/05/31/on-the-failure-of-quit-facebook-day-social-utility-and-privacy/
• http://www.mclean.harvard.edu/news/press/current.php?kw=breaking-the-physician-patient-boundaries-on-facebook%20&id=149
• http://www.facebook.com/AspergerSyndrome?v=info

Tagged as: behaviors, concern, Facebook, privacy, social network