Day #203 – I’m Gonna Light it Up!

It’s almost here…April.

April has been designated as Autism Awareness month and April 2 is Autism Awareness Day.  On this day, several of us will celebrate by Lighting it Up Blue.  This campaign began in 2010 by Autism Speaks.

On the night of April 1 landmarks around the world Light it Up Blue.

Which landmarks you ask?

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Great Buddha of Hyogo in Kobe, Japan.

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Sydney Opera House in Sydney, Australia

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Tianjin TV Tower in Tianjin, India

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Christ the Redeemer Statue in Rio de Janeiro, Brazil

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Niagara Falls in Niagara, New York

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Burj Al Arab in Dubai, United Arab Emirates

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Eiffel Tower in Paris, France

Those are only a few.  This year over 10,000 buildings and structures have registered to Light It Up Blue for autism awareness including Egypt’s Great Pyramids.

Here is where the problem lies.  Some folks will not participate in Light it Up Blue because it was created and promoted by Autism Speaks. From the Autism Speaks website, “Autism Speaks was founded in February 2005 by Bob and Suzanne Wright, grandparents of a child with autism. Their longtime friend Bernie Marcus donated $25 million to help financially launch the organization. Since then, Autism Speaks has grown into the world’s leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. We are proud of what we’ve been able to accomplish and look forward to continued successes in the years ahead.”  (https://www.autismspeaks.org/about-us)

Seems like a great organization, right?

As with any great organization there are detractors, wherein lies my personal struggle.

When we received our diagnosis and I googled ‘autism,’ Autism Speaks was the first choice I clicked upon.  I was presented with a great amount of information and help.

Autism Speaks is the largest advocacy organization for autism and I will address three of the largest concerns about the organization below.

Must of the money raised by Autism Speaks goes toward research that is focused on finding a way to eliminate autism.  Thus making the ‘statement’ that something is wrong with people who have autism.

How do I feel about that?  Ugh.  There is a constant push and pull in my brain about whether I would choose to ‘cure’ autism.  Autism does make Tucker who he is…and I love that.  However, when I see him struggling and frustrated?  I would like autism to go away.  As most parents – I don’t want him to hurt or struggle.

When I think about this I often think of parents who have children further on the spectrum than my own.  I can only speak for my experience.  If my child couldn’t talk?  If he couldn’t go to school?  If he couldn’t feed or dress himself?  I can’t say…I just can’t say, either way.

Autism Speaks does not have a single autistic member on their board.

True.  Upon further investigation and reading of the biographies listed here is what I found about board members and staff.

  • Curtis Arledge and his wife, Diane, have a son on the autism spectrum.
  • Sallie Bernard has two children, one of whom has autism.
  • Matthew Higgins has two children, one of whom has autism.
  • Adrian Jones is the father of a child with autism.
  • Brian Kelly and his wife, Patricia, have six children, one of whom has autism.
  • Shawn Matthews and his wife, Monica, have four children, one of whom has autism.
  • Gary Mayerson is married and has a family member who is diagnosed with autism.
  • KEvin Murray and his wife, Susan, have three children, one of whom has autism.
  • Stuart Savitz and his wife, Amy, have two children, one of whom has autism.
  • Laura Slatkin and her husband, Harry, have two children, one of whom has autism
  • David Wittels, and his wife, Cindy, and two children, one of whom has autism.
  • Bob and Suzanne Wright who started Autism Speaks and have a grandchild who has autism.

So, no – none of these people have autism directly.  Of the 30 persons listed directly on their website, 13 self-disclosed a child, grandchild, or family member who has autism.  The other members had backgrounds in finance, marketing, education, law, and medicine.

Do I think having a person with autism on the board would make sense?  Sure.  Is it a deal breaker?  Not for me.  When reconciling in my brain I consider our Cabinet – maybe this will help put it into perspective.

  • Does the Secretary of the Treasury, Jack Lew, have any previous banking experience?  Nope…he was an attorney.
  • Does the Secretary of Defense, Ashton Carter, have any previous military experience?  Nope…he studied physics.
  • Does the Secretary of the Interior, Sally Jewell, have any previous experience in conservation or park management?   Nope…she studied to be an engineer and previously worked in the oil and banking industries.  She is, however, the former President of an outdoor gear retail company.
  • Is the Secretary of Agriculture, Tom Vilsack, a former farmer?  Nope…he was an attorney.

I could go on through the entire Cabinet – but I’ll save you the boredom.  I think my point is made.  Yes, I think it would be great for a person with autism to serve on this board – but is it a necessity?  I don’t know.  I think I would be pretty qualified to serve on this board, seriously – how about a mom/teacher/blogger from the middle of Iowa (wink, wink)?  At the same time, I think if someone asked Tucker he would think it was a complete waste of his time.  He’s too busy living and just being himself.

Autism Speaks only spends 70% of their budget on services.

The Daily Beast, an independent and original reporting agency reported that, “A comparison of 2012 income tax forms found through theUrban Institute shows 70.9 percent of Autism Speaks’ revenue is devoted to program expenses, in comparison to 79.8 percent of the Autistics Self-Advocacy Network’s and 91.5 percent of the Autism Science Foundation’s. Autism Speaks declined to comment on its financial matters.

While Autism Speaks is much bigger and has a larger staff than both of those organizations, the difference in money spent on “current officers, directors, trustees, and other key employees” is striking…the Autistics Self-Advocacy Network spent just $65,000 on this class of employees. That was to cover the salary of its president, Ari Ne’eman. In comparison, the former president of Autism Speaks, Mark Roithmayr, had a salary of $436,314.” (http://www.thedailybeast.com/articles/2014/06/13/autism-speaks-but-should-everyone-listen.html)

Do I think $426,314 is ridiculous?  I sure do – I’m not sure ANYONE is worth that amount of money.  However, when considering the background of those on the Board of Directors – it most likely pales in comparison to what they could earn in the ‘for-profit’ world.  These are folks came from the likes of BNY Mellon Wealth Management, Deutsche Bank, Samsung, Merck, Estee Lauder, Miami Dolphins, New York Jets, Jet Blue, Goldman Sachs, SiriusXM, Fox Sports, Allstate, Ford, GM, BMG, Cantor Fitzgerald & Co., FX Network, and American Express to name a few.

I’m not helping to make excuses – but people like this don’t come cheap.  People like this come with lots of connections.  The type of connections that allow over 10,000 landmarks to Light it Up Blue.  The type of connections that allow for a strong internet presence.  The type of connections that helps for strong advocacy.

It seems in many areas of life there is always a trade-off…

Do I think it’s right that so much money is spent on staff salaries and benefits?  No.  Is it necessary to have the type of reach that Autism Speaks has?  Probably.

The problem, to me, seems more systematic.  It’s a larger issue than just Autism Speaks – it’s how lobbying, advocacy, legislation, research, and social movement have come to intersect.

So, I will choose to Light it Up Blue – because ANY type of advocacy, ANY type of knowledge dissemination, ANY amount of attention is good for helping others understand autism.

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6 thoughts on “Day #203 – I’m Gonna Light it Up!

  1. I really love your blog! Our 4 year old daughter is on the spectrum, and of all of the blogs out there, this is the one I identify with and enjoy reading the most. We will be lighting it up blue because support, resources, and awareness are so important – and we have benefitted from it all! I also write, so if you are ever looking for guest bloggers, I would love the opportunity! My email is larissasalvato@gmail.com.

    Like

  2. Pingback: Day #206 – Finding Roots in Controversy | 366 Days of Autism

  3. Pingback: Day #327 – Indexing | 366 Days of Autism

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