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“Autistics Speak, It’s Time to Listen”

April is Autism Awareness (Acceptance) Month, 4/2 being World Autism Day. With April fast approaching, Autistic people are speaking out and urging others to not support Autism Speaks. When children are first diagnosed with autism, often times the first organization families see is  Autism Speaks, and is not a very good organization for helping and supporting autistic people. Only 4% of the money they raise goes to helping autistic people and their families. The rest goes to catering, paychecks and their “awareness” campaign. The awareness campaign itself, particularly the fact that Autism Speaks uses it to spread fear and stigma, is a huge problem Autistic people have with the organization

Autism Speaks is responsible for the video “Autism Every Day,” a monstrous “informative” video, where they record children having meltdowns. A mother even said, in front of her daughter no less, that she had contemplated murder/suicide of herself and her autistic daughter. The only reason she didn’t was because she couldn’t leave her “normal” daughter without a mother.

They also made the “I Am Autism” video, where autism is compared to aids, childhood cancers, and blamed for divorce, bankruptcy, and stealing your children. It is narrated by a creepy deep voice and only serves to further stigmatize and spread fear of autism.

Their awareness campaigns serve only to spread fear and misinformation about autism. Autism Speaks says that autism is a children’s disorder, even when autistic children grow up they “aren’t really grown up, but have the mind of a 5 year old.” People are made to fear autism because it can “steal your child” and leave behind a different kid, or trap your child in “the prison of autism.” They portray autism as something that steals and harms your children, even though if you’re autistic, you have always been autistic. While they have redacted finding a cure from their mission, I still feel like it needs to be talked about. For the last decade, finding a cure for autism was a big part of their research. Most Autistic people don’t want a cure, as autism is an integral part of who they are. Getting rid of our autism will essentially get rid of us, of who we are right now and always have been, leaving behind an entirely different person. The only “cure” would be eugenics. A DNA test like they have for Down’s Syndrome, which resulted in the abortion of many babies that tested positive, is something on the table right now for autism research. A good number of autistic babies will never be born, simply because they are autistic. They have now changed their mission statement to “understanding the causes of autism.” On the surface this sounds good, but I am worried, as I’m sure other people are, that “understanding the causes” wil turn into “avoiding the causes.”

“Autism Speaks Does Not Speak For Me”

Autism Speaks is notorious within the autistic community for speaking over actually autistic people. They ignore and belittle us. If you can’t speak  verbally, then they ignore your communication methods in favor of ‘oh this poor child with autism can’t even speak.’ If you can speak, regardless of the rest of your abilities, you get shot down with something like, ‘Well, you can’t speak for those children with autism.’ When we voice our opinions about our own brain workings and life, they shush us in favor of their own fear mongering rhetoric. When a charity is supposed to support a certain group of people, it is important to ask that group of people how they feel about the group. I personally have not met any autistic adults that support the organization, and most loudly protest it.

“Nothing About Us Without Us”

Autism Speaks had no autistic people in positions of power within the organization. They once hired an autistic man to the board in an attempt to appease us, but he quit shortly after because he was being ignored and disrespected. Often times we speak out only to be ignored or invalidated. Recently, the organization hired two more autistic people to the board, Dr. Stephen Shore and Dr. Valerie Paradiz. Dr. Stephen Shore is quoted as being the person responsible for “If you’ve met one person with autism, you’ve met one person with autism.” While this is a good start, adding more autistic voices, especially ones with varying opinions and voices, would be much better. They also recently added “through the lifetime” to their mission, although until they prove that they are actually going to help autistic adults, I feel like it should be taken with a grain of salt.

There are a few other organizations you can support instead that are run by and for autistic people. They support autistic people of all ages as well, not just children, and spread acceptance and real information. For any organization that is supposed to help a certain group of people, if that group of people says something, they should listen. A charity that isn’t supported by the people it is supposed to help should definitely be, at least, questioned.

“People Not Puzzles”

See my other post on just this topic here: https://swirlymind.wordpress.com/2017/03/04/im-a-person-not-a-puzzle/

Printable Informational Pamphlet:

AutismSpeaksPamphlet

Further Reading:

  1. http://autisticadvocacy.org/tag/autism-speaks/
  2. https://autismwomensnetwork.org/is-autism-speaks-a-hate-group/
  3. https://emmashopebook.com/2013/11/13/whats-wrong-with-autism-speaks/
  4. https://thecaffeinatedautistic.wordpress.com/2013/03/05/why-i-am-against-autism-speaks-and-you-should-be-too-2/
  5. https://parenting.blogs.nytimes.com/2015/06/04/speaking-out-against-autism-speaks-even-if-it-means-no-ice-cream/
  6. https://www.theodysseyonline.com/7-reasons-not-support-autism-speaks

4 thoughts on “Please Don’t Support Autism Speaks

  1. Some of the information in the column is outdated and incorrect.

    Autism Speaks now has two Autistic members on their board of directors. They are Valarie Paradiz http://www.autismselfadvocacy.com and Dr. Stephen Shore http://www.autismasperger.net. I have spoken to a number of autistic people who think very highly of Dr. Shore. Dr. Shore is believed to have coined the phrase “If you have met one person with autism, you have met one person with autism”. Dr. Shore believes “acceptance” is only one step towered the goal of “appreciation” http://www.marketwired.com/press-release/dr-shores-workshop-on-awareness-acceptance-and-appreciation-is-a-great-success-2200815.htm

    Autism Speaks has dropped the word “cure” from their mission statement and added the words “through the lifetime” which might indicate they are going past their children only policies. https://themighty.com/2016/10/autism-speaks-changes-mission-no-longer-seeks-cure/

    In addition, Bob Wright the founder of the organization resigned his position as CEO although he is still on the board. His wife and Autism Speaks co-founder Suzanne succumbed to pancreatic cancer.

    Most autistic advocates believe these changes are cosmetic and deliberate misinformation. I am not so sure. That said I do find their #MSSNG database offensive and troubling. And their history more than justifies cynicism. Apologies for those videos you mentioned are in order, paying damages would be better.

    The neurodiversity and autistic rights movement are not served well by us spreading misinformation.

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    1. I also feel alot of their changes are cosmetic. I am unwilling to change my view of them until the prove they are willing to listen to us. Too much of their past is offensive and, quite honestly, endangering. I’m sorry about the misinformation I hadn’t heard of the new people. I will edit my article to fix it. Although they have dropped the word cure, they are definitely still researching for one, and adding “through the lifetime” doesn’t mean much until they prove it. Thanks for keeping me updated!!

      Like

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