Tuesday, December 31, 2013

Why I boycott Autism speaks and you should too

There is a hash tag on twitter now called #boycottautismspeaks . Those behind it have organized twitter marches against autism speaks and bombarded thier corporate sponsors requesting they stop supporting Autism Speaks. They have the support of those on the spectrum and thier family and friends. They have my support and this is why.

I have a dream for my 2 sons with Autism. That dream is a pretty common one for most parents. I want them to live independent lives with fulfilling jobs that they can support themselves with. I want them to have friends and be happy. Every dollar that is donated to Autism Speaks to further their goals infinitely hurts them. Every penny makes it that much harder for them to achieve that pretty reasonable goal of being happy and self supporting.

This is why.

Recently the Co-Founder of Autism Speaks wrote and published this op-ed :

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

In it she states :

"Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house.  That is - if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes?  Climb the furniture? Raid the refrigerator?  Sometimes – the silence is worse.
These families are not living.
They are existing. Breathing – yes.  Eating – yes. Sleeping- maybe.  Working- most definitely - 24/7.
This is autism.
Life is lived moment-to-moment.  In anticipation of the child’s next move.  In despair.  In fear of the future.  
This is autism.

In 2009 her foundation put a spot on TV entitled "I am autism" that stated this :

"I am autism. I’m visible in your children. But if I can help it, I am invisible to you until it’s too late. I know where you live. And guess what? I live there too. I hover around all of you. I know no color barrier, no religion, no morality, no currency. I speak your language fluently, and with every voice I take away, I acquire yet another language. I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined. And if you are happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain. I don’t sleep, so I make sure you don’t either. I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park without a struggle, without embarrassment, without pain. You have no cure for me. Your scientists don’t have the resources and I relish their desperation. Your neighbors are happier to pretend that I don’t exist, of course, until it’s their child. I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up, you will cry, wondering, “Who will take care of my child after I die?” And the truth is, I’m still winning. And you’re scared. And you should be. I am autism. You ignored me. That was a mistake." 

If you listen to Autism Speaks you think anyone with an autism spectrum disorder (ASD) is a home wrecking, bankrupting, physically dangerous individual.

Now do you want to be friends with a monster who wrecks marriages, bankrupts families and might hurt themselves or others without warning? Do you want to hire or work with someone like this? Rent an apartment to one? Live next door to one? Have your children play with one? Let you son or daughter marry one?

Chances are if you are honest with yourself the answer is no.

How is an organization that puports to advocate for those with ASD and actually met with washington leaders to formulate a plan for the adults with ASD helping with any of that if they constantly paint the very people they claim to help as monsters?

How can they advocate for acceptance  and inclusion when all they do is encourage isolation by making the public fear those with ASD?

The honest truth is they cant. The honest truth is Suzanne Wright wants to eliminate all with ASD. She has stated she wants the term autism to be a historical term only. That is the goal of autism speaks. To eliminate the Albert Einsteins, Daryl Hannah, Dan Ackroyds, Susan Boyles, Temple Grandins and Steve Jobs of the world. I dont know about you but that's not a place I want to live in.

Autism speaks only spends $$ on themselves, fear mongering and research to eliminate autism. They dont help people already affected by ASD. They do not help fund supports in local communities. They do not help people with ASD at all.


This is why I #boycottAutismSpeaks and you should too. But if you need more reasons read why these people also do not support Autism Speaks. One is a former advisor to them and the other a well known advocate who actually met Suzanne and details in this link how Suzanne doesn't even understand those with autism even though she claims to have a grandchild affected by it.

John Elder Robinson :
http://jerobison.blogspot.com/2013/11/i-resign-my-roles-at-autism-speaks.html

Diary of a Mom :
http://adiaryofamom.wordpress.com/2013/11/12/no-more-a-letter-to-suzanne-wright/

Autism is a spectrum like the rainbow. The only correct course of action is to support those with ASD and make a place for ALL of them at the table of life. Life is more colorful and amazing when you do. There are far more colors on the autism spectrum than just blue.

If you are looking for an organization that truly does support those with ASD and is working towards providing supports and acceptance of those with autism I would recommend :

The Autism Self advocacy Network
http://autisticadvocacy.org/

The National Autism Society
http://www.autism-society.org/