Earlier this month, I came across a tweet about @Zamzee – a device that enables gamified fitness for kids.  Intrigued, I went to the site to check it out and learned that Zamzee is having some encouraging success getting children – even entire families – to be more active.  In fact, they’ve got data that shows that people using the device are nearly 60% more active.

Naturally, I think technology like this aligns well with the broader goal of addressing childhood obesity.  My immediate thought, however, was my son – who has Asperger’s — and  other children on the autism spectrum who dislike organized sports.  While he doesn’t face any challenges with his weight, he HATES “formal” exercise, mandatory physical activity and gym class.  (This is not to say he doesn’t like to bounce on trampolines or run around playgrounds for hours on end.) His love of video games is what made me think this approach to being active would be effective.

More than a pedometer

Zamzee is much more than a pedometer.  Not only does it measure your activity and the intensity of your activity, once you plug the device into your USB drive and go the site, you enter a gaming experience where you earn points, engage with the community, take challenges and earn “Zams” — a form of online currency – which can then be used to purchase items through the site!  I thought something like this would surely be appealing to my son, particularly since some of the items redeemable are versions of his favorite Wii game, Mario Kart.

Although he was skeptical, I reached out to Zamzee and got him a device.  Once he got onto the site, he took to it immediately, customizing his avatar and taking his first challenge within minutes.  In fact, I reminded him that a favorite TV show was about to start and he passed, saying he’d rather take the challenge and start earning points!

We’ve been using the device for about a week now and I’m hopeful his interest continues — it’s great to see him being more active.  Toward the end of the day, when he plugs his Zamzee in to upload his daily points, he inevitably goes for the next challenge for more points.  He’ll run in place, do jumping jacks, run up and down the stairs – as my wife says, if only we can figure out how to channel this into helping with housework (mopping and sweeping earn points, too)!

I’d really like to see if this is something that could help other children on the spectrum be more active.

What do you think?

Read More

Earlier this month, KevinMD ran a dispiriting piece by Mark Britton on how, exactly, we reached the point where Jenny McCarthy — a person who rose to fame by removing all of her clothes — could become a medical thought leader. Britton nails exactly why McCarthy was able to corner the market on autism advocacy: in today’s wild, anyone-can-publish-anything world, she has been able to leverage all of the tools at her disposal, from Twitter to Huffington Post to traditional publishing. That her point of view is, at best, wrong and, at worst, dangerous, hasn’t kept her from being the go-to “mommy warrior” for millions.

And it’s not just celebs that have been able to build themselves into experts: advocates and advocacy groups armed with nothing more than a Twitter handle or a Facebook account can easily organize dedicated groups of meaningful size. Most of these groups are welcome additions to the marketplace of ideas, but some peddle false hope or stoke misdirected anger.

But in the cacophony, one set of voices remains under-represented: those of doctors and other public health experts. This isn’t entirely surprising: the medical hierarchy is built on commitment to patients, research and medicine, not to social-media volume. Doing hand-to-hand online combat with former Playboy bunnies or pseudonymous  voices is time consuming, and success hard to define. Perhaps that’s the reason why — when professionals fight back — they usually do it in the traditional way: a book, some interviews, a TV appearance or two.

Take Paul Offit, the University of Pennsylvania vaccinologist who has emerged as the best, most sane voice in the vaccination debate. He’s written two fantastic books.  He’s had op-eds in the New York Times, been reviewed by NPR and even had a head-to-head with the Mike Wallace of our time, Stephen Colbert. But he has no blog and he has used his Twitter account, dormant since May, only 33 times. Jenny McCarthy has tweeted 33 times in the last 48 hours (including a half-dozen autism-related posts).  On paper, there is no doubt who should wield more authority. But this battle isn’t being fought on paper. It’s being fought online.

Still, nowhere is it written that health care authorities can’t provide strong leadership online, and there are at least three models to consider:

  • Dr. Leonard Lichtenfeld: The American Cancer Society’s “Dr. Len” has a blog and an active Twitter account. But it’s not just that he has the new media tools — it’s a rare organization that doesn’t — what sets Lichtenfeld apart is how he uses the tools at his disposal. His posts are topical, and he is a participant on Twitter, carrying on conversations with advocates and media. ACS has a number of tools for getting their message out, but none seem as authentic or authoritative as their online efforts.
  • Dr. Harlan Krumholtz: Building a social media audience from scratch can be difficult, but Krumholtz, one of the leaders in cardiology, has leveraged existing networks to ensure his voice can get out to the public, unfiltered. He is plugged into the as a contributor, giving him the ability to reach a broad audience, and he works with the publisher of the New England Journal of Medicine to edit CardioExchange, a cardiology-specific social network.
  • Dr. Howard Luks: And for brute force on Twitter, it’s hard to top Luks, an orthopedist in New York, who has generated nearly 15,000 tweets on the intersection of technology and medicine. While he has a blog (and quick, effective videos and a Posterous account), it’s clear he’s focused most of his energy on Twitter, and the payoff is obvious.

These aren’t the only docs who have successfully leverage social media, but the strategies these three have employed could be templates. And we need templates. Social media isn’t a toy or a distraction. It is, for better or worse, a tool that helps define how millions view medicine. Right now, that tool is not being used most effectively by the people that we most need to hear from.

[ADDENDUM: If there are docs out there that want to build their digital footprint but aren’t entirely certain how to get started, please drop us a line and we’ll point you in the right direction. Increasingly, there are excellent tools to amplify expertise that don’t require the care and feeding of a full-fledged blog. One of these options is Sharecare (disclosure: Sharecare is a WCG client), which has built an expert-driven Q-and-A site for health questions.]

Read More

If you’ve read some of my previous posts, you’ll know that my son has Asperger’s, and that I’m personally and professionally interested in seeing how technology can aid those on the spectrum (e.g., with socialization, reading emotion, showing empathy).

With that in mind, there are two developments taking shape in my house… the adoption of technologies that definitely aren’t trending on Techmeme.

Enter the age of email.

My wife and I recently set my son up with a Gmail account. We did so, initially, to allow him to share Flip videos with family.  He’s completely taken to it and has started to have email conversations with grandparents, cousins, and, most recently, friends from school. He loves to add emoticons to help express how he’s feeling.  The other day he came home with the email addresses of three friends and “HAD TO” send an email to one before going to the dentist.

Say what you want about email…to us, this is a clear way that technology is having a positive impact on our son.  He’s connecting with people, sharing information and emotion — and growing those relationships on/offline.  With many Aspies, interests can sometimes escalate into obsessions.  As long as we establish clear boundaries and internet safety, email communication removes all the vague “tone and irony” stuff from his interpersonal conversations. Win!

Hello Caller!

Although he’s been known to have longwinded, often one-directional phone conversations with family, it is just recently that my son has been making/receiving phone calls with friends from school.  To hear him have a 20 minute conversation with a friend (and let the other person talk!) brings a smile to my face.  This might not seem like a big deal, but, the phone, like email, is helping him socialize and that will pay dividends offline as well.

Ok, so no major tech breakthroughs here today folks.  Sometimes it’s the simple things that make a difference.

What do you think?  Should I spring for the iPad2 (check out this video from the iPad2 lauch re: autism education) or ride the email fad for a bit?

Read More

The holidays are over… the wrapping paper has been cleaned up, the decorations put away, and it’s been a couple of weeks since some new gadgets have found their way into my son’s hands. Although he was really hoping for an iPhone, we weren’t about to go there yet!  Among the gifts he did receive were two that we thought he’d really gravitate towards.

One was the uDraw for Wii. A very cool tablet that lets you draw/create “on screen”. You can then save, print, etc. Neat technology that my kids have compared to the smart boards used in their schools. On the downside, I think the pen/stylus is a bit clunky and I think my son would like it much more if the tablet were operational by touch.

Another gift he received this year was a Flip cam. This he absolutely LOVES. He has shot countless hours of clips in the last few weeks and has quickly mastered uploading the files from the camera and creating mini movies – complete with cleaver titles, music, etc. This was, by far, the big hit gift of the season. And while it’s fun for him, there may be a practical value here as well — I’ve mentioned before that it can be a challenge for my son to take pen to paper and write a creative story/paragraph for school. In the last few days, I’ve been thinking he might be able use his camera to create a story (thus helping him through his homework). An area to explore…

So the Flip was a hit, but, in retrospect, I wish we had considered an iPad as there are some terrific apps out there for people on the spectrum (for some great info on this, check out this post by Shannon Des Roches Rosa). On the plus side, as we heard out of CES this week, there are a bunch of new tablets coming out this year and that will surely lead to the development of even more apps targeted to those on the spectrum…. so a tablet may not be is not too far off for us.

Beyond the iPad/tablet love in the air, what other new technologies are you aware of/would you like to see explored to help people on the spectrum?

Read More

First off, it’s been a while since I’ve posted, so sorry for that.

Lately I’ve been thinking… should I write a snarky post about 2010 social media predictions that haven’t come through?  Maybe a post about the potential impact of mid-term elections on the likelihood of FDA guidance on social media anytime soon?  Whatever happened to Augmented Reality?

I pushed that noise aside and realized that what I really wanted to write about was the utilization and integration of technology for those on the Autism Spectrum – including those with Asperger’s Syndrome.

You may have seen that I wrote about this last February (well, at least I hope you did) as I started to connect the dots between my work and life.  As noted then, my son was diagnosed in 2009 with Asperger’s Syndrome.  What I’ve come to appreciate more and more since then: I think he gravitates towards technology.   He loves to use and explore computers and mobile devices and adapts quickly.  He now has his own Nano and Shuffle.  Given my own interest in technology, I see this as a great way to connect with him.

Recently, I think we came across a real breakthrough.  After struggling through a writing assignment (the physical act of writing may be challenging for someone on the spectrum) and later discussing this with my son’s teacher, we learned that the school has Fusion portable word processors that he’d be able to use for some assignments.  My son took to this quickly and wrote (typed) a wonderful story about owls last week.  His reaction and willingness to complete the assignment was completely different.  How cool is that?  Granted, he’s not in “hands on home keys” mode, but I noticed the other day that his typing was faster than a week ago.

Ok, so enough about me and mine.  The point is I strongly believe that technology has an important role in helping kids on the spectrum.  Heck, when I wrote about this in February, the iPad had just been announced — now there are even more great apps out there to help these kids. 

I had previously mentioned a free Model Me Kids app, but this time wanted to point out this video.  There are some great visuals in here – and it’s so cool to see this little guy exploring the iPad.  The video (made by his mom) shows a few of the apps they recommend and they’ve got other reviews here.  

As I said before, I often see how “normal” social interactions can be a challenge for my son.  But I also see how technology/ online social tools allow people to connect in a way that maybe less threatening.   

What are your thoughts?  What technologies do you think are untapped for those on the spectrum?  Or, how are you/would you use social media to help people with Asperger’s (and their caregivers)?

Read More

Marketer extraordinaire Seth Godin pushed out a visionary post on his blog this week, predicting that politics in the United States would increasingly be tilted away from the candidates with money (who therefore have the resources to make massive ad buys) and toward the candidates with personality: the outliers, the angry, the rebels.

The logic is simple. People don’t passively consume media anymore. We are a national seekers, and the stuff we seek is interesting. The winning candidate of the future will hold our attention better than his or her opponent, and holding our attention has precious little to do with TV spots:

When attention is scarce and there are many choices, media costs something other than money. It costs interesting. If you are angry or remarkable or an outlier, you’re interesting, and your idea can spread. … Thus, as media moves from TV-driven to attention-driven, we’re going to see more outliers, more renegades and more angry people driving agendas and getting elected.

Seth’s point, though, can be extrapolated beyond politics, and that’s where I get nervous. In the arena of health, well-vetted ideas face heavy competition from engaging but unproven theories. Autism is the classic example: it is far interesting and far more compelling to listen to Jenny McCarthy tell her personal narrative than to chronicle the frustrating search for answers going on in windowless labs around the world. But it goes beyond autism. It’s the anecdotal water-cooler talk about how a co-worker got influenza right after a flu shot. Or it’s the rush to suggest that our increasing understanding of the connection between XMRV  and chronic fatigue means that patients should jump at the chance to take powerful HIV medications in advance of any human testing.

But in those cases — and thousands more — paying attention to the more “interesting” narratives around health risks missing out on the drier, more mundane — but hugely more important — realities. Most people might prefer to read about Suzanne Somers than Archie Cochrane, but if you wheel me into the hospital, I want to be damn sure that my doctor has JAMA on his desk, not US Weekly.

This is the reason that copywriting about health is so important. Those of us who communicate have an absolute obligation to be clear and accurate. But, increasingly, there is also a need to provide color and personality (within those bounds of clarity and accuracy); overly corporate healthspeak or overly clincial healthspeak is too easy to ignore in a world of a million different media options. To beat back the Jenny McCarthys of the world, we need a few more aspiring Lewis Thomases or Atul Gawandes: writers who can be both true to the facts and — to echo Seth — interesting.

Read More

Last August two important changes happened in my life and work.  Professionally, after many years in “traditional” healthcare communications, both at PR agencies and working at Bayer HealthCare, I had taken on a new focus in social media.  Coincidentally, that same month, my son was diagnosed with Asperger’s Syndrome.  So here I was, discussing with clients how to better listen and participate with stakeholders through social media and, at the same time, coping with/trying to support a child for whom social skills can be such a challenge.

The convergence link wasn’t obvious.  Sure, I’ve been following #aspergers and #autism on twitter, have been reading emotional, inspiring posts such as those on Life With Aspergers , Wrong Planet , and Cutest Kid Ever — but not until recently had I started to connect the dots.

Then, last week, a parent of an Aspie mentioned that The Sims helped her child better understand/read personal expressions.  That got me thinking…

Social media is widely used by Aspies and, in many cases, their caregivers.  So how can we better leverage these technologies to help people with Asperger’s socialize?  Here’s a few starters:

Dr. Gary B. wrote an interesting post on Wellsphere about some of his patients using Facebook – that’s awesome!

My son loves to play with computers and with my iPhone.  Model Me Kids (which also runs a social network) recently introduced a new app to help kids navigate challenging everyday situations.  It’s free and complements their video-based programming.  There’s also the iPrompts app, which uses visual prompting tools to help transition from activity to activity.   Both great ideas and I hope to see more of the same.

iPods – yet another example from the Fraser Child & Family Center (Minneapolis), who are using iPods to help kids by providing an “inner voice” on what’s appropriate behavior.

And wouldn’t it be cool to see an augmented reality app that could help kids better read facial expressions or social cues?

Every day I see how “normal” social interactions can be a challenge for my son.  But I also see every day how online social tools allow people to connect in a way that is (maybe) less threatening.  I’m hopeful that these technologies can help my son and others, and I look forward to exploring them further.

What are your opinions on this?  How would you use social media to help people with Asperger’s (and their caregivers)?  Please share your thoughts, along with any similar experiences, in the comments box.

Read More