November 17, 2013

• The Way We Advocate - At What Cost?

  I've been in the Marketing world for over a decade, from the online world to Direct Mail, I've seen some of the best ways to go about things - and much of the worst.  Suffice it to say, not much surprises me anymore - but no matter what, I still learn a lot.

  I mention this only due to the simple fact that as part of running Autisable - I've come in contact with some incredible people that work towards making the world a much better place for those who have Autism.

  Some of the people that I work with are a part of the largest and most well known Autism organizations around the world.

  As fantastic as that sounds, it also provides a unique challenge.

  You see, many people are very aware of the two most prominent Autism Organizations in the United States:  Autism Speaks, and Autism Society.

  I'm blessed to know people at both organizations.  I'm also aware of their strengths and weaknesses.   After all, most organizations have various things that they are much better at then others.

  Recently the folks at Autism Speaks went to Washington DC to speak with State representatives to discuss a National Autism plan.   Right now, for example, Insurance for those families with Autism are still left up to the states - even after the Affordable Care Act.  Having a consistent National plan of action would benefit so many - and it's something that I seriously support.

  I commend this team of folks for putting forth the energy and effort to get a national plan in place.   Insurance coverage for Autism therapies and treatments are still lacking for many families.  It's sad that many people would have a prescription from their doctor to get therapies and treatments done - only to find out that insurance wouldn't cover it... but I digress....

  But, not all people with Autism require these treatments.  In fact, many people with Autism/Asperger's have shared with me that even ABA therapy has significant drawbacks.   My perspective regarding Autism has changed significantly over the past decade.   I've learned more about Autism from those who are diagnosed with it.

  Of course, I'm still no expert - but the reality is there is so much more to learn and understand about this topic.

  Now, there's always two sides to every story - and this one is no different.

  Autism Speaks has some great people associated with it.  It is a serious PR powerhouse in raising Autism Awareness and has worked hard at researching the subject.  I've met and talked with many people associated with the organization - and have talked to people who have benefited from it.   They've provided millions in grants that have helped thousands of businesses and families that benefit those with Autism.

  But for all it does for Autism Awareness, I think it's greatest challenge is itself.

  I've shared with a few folks I'm connected to at Autism Speaks that their biggest challenge is getting support from within the Autism community.   The biggest hurdle is in actually having people with Autism/Asperger's being a part of their Board.

  So many Autism Promotional campaigns that tend to cast a negative light has actually caused more harm then good.   I know of a few dozen families that have contacted me personally to see if I can let their leadership know that a campaign has gone sour.

  The intentions are good, but lack something rather important - being in touch with the community at large.

  This past week is an example of a greater challenge in advocacy - the need to get a point across on how important that the legislative branch of our government gets on board.

  Now I submit an op-ed piece by Suzanne Wright, co-founder of Autism Speaks:

  http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action

  In this writing she's trying to emphasize the need that those in washington need to take action.  She does this by citing some facts and figures to help get her point further across.

  However, and to put it bluntly, it's rather poorly written - and shows a lack of global understanding of what Autism truly is.

  I get WHAT she was doing, and actually do understand why she went about it this way - but it was unnecessary.
  From a Marketing perspective, someone in her position has an opportunity to express an opinion to incite people to take action.

  But, at what cost?

  With Autism Speaks being the PR powerhouse that it is for Autism Awareness and fundraising - it's a bit ironic that it has a significant challenge of handling the PR for it's own founders.   It's also evident that the Autism community is taking more notice and is beginning to trust this large organization even less.

  As a result of Autism Speaks Founder's Op-Ed piece, one of their very few leaders who has Asperger's resigned his position at Autism Speaks:   http://www.jerobison.blogspot.com/2013/11/i-resign-my-roles-at-autism-speaks.html

  There have been several Parents who have stated their perspective as well - in that they don't like what Suzanne said -and that the phrase 'Autism doesn't Speak' for me has become rather a trending topic in some circles - and those circles are growing.

  This effort provided by those at Autism Speaks has therefore become a two-edged sword.  On one side their efforts can be commended, but these efforts are being over shadowed by a lost connection to the very community that this organization is trying to represent.

  One can only hope that my friends at Autism Speaks will be able to overcome this hurdle, and that the Founder's will grow in understanding as to how they can be more influential in their advocacy efforts by uniting the community, rather than dividing it.

   

  • 4:41 pm
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