Friday, November 29, 2013

Autism Speaks - Please don't speak for me...



I've never been much of a fan of Autism Speaks, one of the most recognizable charities that purports to help people with Autism. Recent statements by co-founder Suzanne Wright pretty much cemented what I've always felt about the organization -- they certainly don't speak for me. I think the idea of a national organization designed to champion the rights of people with Autism and their families is a wonderful idea....but I don't believe that Autism Speaks represents that organization. Sadly, they are the most widely recognized and I would suspect that the average person, who has little involvement in the world of Autism, may think that donating to them would be a good thing. Sadly, apparently only 4% of their fundraising goes to programs that may benefit Autistic individuals -- the vast majority of fundraising goes to research. Not that I'm against research, please, research away, it would be interesting to me to know what causes Autism (I suspect there are SEVERAL things that cause it, not just one) but mostly I like to support organizations that offer real support and assistance to families and individuals living with Autism. Research can mean all sorts of things.  It's sort of the same way I feel about organizations that raise money for "autism awareness".  I've never quite figured out what that means.  Where does the money really go?

This particular statement doesn't appear that bad on the surface.  I agree that the government needs to do more to help these children.  And I guess the only way to get the government to dole out funds, is to paint an unimaginable picture -- which is what she has done.  I mostly take exception to the part that says that the families of autistic people aren't living.....just existing.  Life is lived in despair --- what a sad picture to paint to the world.  This goes against everything I feel about how I would ever want autism to be represented to the world - as if it is a horrible burden that we are saddled with, and that must be eradicated.

A recent blog post by John Elder Robison sums up this recent controversy regarding Suzanne Wright's statement  much better than I can, he is an individual on the Autism spectrum, and had a personal relationship with the organization.   He recently decided to severe his association with the organization.  I also highly recommend his books "Be Different" and "Look me in the Eye" two books I've read on my journey as an "autism Mom". 

I've been involved in this world of Autism for about 10 years now, since Limefreckle Jr. was diagnosed at age 2.  I've met, many, MANY different types of people along the way, some that have become fast friends, some that I wish I had never met.  One thing that I have learned above all else -- Autism is a VERY. WIDE.SPECTRUM.  No two children are alike - similar yes, but rarely the same.  This of course makes it very difficult to find the right treatments etc. to satisfy everyone. I've also learned that family members of people with autism (of which the founders of Autism Speaks are - their grandson has autism) can be very passionate about their journey with autism.  Some people handle this whole journey with grace, dignity, and humour.  Some rage against it, and hope for "recovery" for their child.  Some paint a dismal, horrible picture of living with autism.  Some prefer to focus on the humour and lighter side of life.  Like the spectrum of Autism, everyone's response to living with it is different.  I've seen families deck their children out in t-shirts proclaiming their autism, stickers covering their cars, in an "I HAVE AUTISM AND I AM PROUD" kind of way.  Personally I've always been a bit uncomfortable with that.  I didn't want to drive around with a multi coloured ribbon on my car (until Limefreckle Jr. announced that he wanted one, and then I said "who am I to argue?" and we slapped one on the car till it fell off in the car wash).  I have made Autism Awareness Bracelets because jewelry is my preferred way of expressing myself.  One family we know has a "handicapped child" sign outside their front yard, I'll never forget the day Limefreckle Jr. and I pulled up in front of the house, and Jr. said to me, "WHAT?  Matthew D. is handicapped???"  I've laughed and laughed about that ever since.  It was an awkward conversation to have with him, because he knows he has autism, and he knows that Matthew D. has autism, but never in his wildest dreams did he consider that to mean that he is handicapped in any way.  I just told him that some people consider autism to be a handicap, and he seemed to accept that and not mention it again. 

I wish there was a national organization as widely recognized that really represented the interests of ALL people with Autism, and that really worked to help the individuals living with autism and their families.  I would much prefer to hear words of encouragement, hope, and real support, rather than words of doom, gloom and fear.  I find that is a much better way to live my life.

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