Autism Speaks: Will they ever learn?

The caffinated autistic updated their post from December 2015 regarding Autism Speaks to make sure the data was updated. There isn’t any improvement in their ability to actually be there for the people they claim to represent. Links to the information are found on The caffinated autistic’s blog. Autism Speaks do not cease disappointing.

Update 4/4/17 – as of December 2015, Autism Speaks now has two autistic board members, Dr. Stephen Shore and Dr. Valarie Paradiz.   In addition, their mission statement no longer includes the word “cure” .  You can read more specifics here. 

When a person thinks of the term “Autism Awareness” in the United States, it’s usually one organization that comes to mind – Autism Speaks.  It is heralded by celebrities, politicians, nonprofit and for profit organizations alike. Many parents of autistic children enthusiastically applaud their “efforts”, even partaking in fundraising, despite not knowing much about what those efforts entail.

Ask an autistic person, however, and you might get quite a different picture of Autism Speaks.

The number one tenet of any activism among disability groups is “Nothing About Us Without Us”, yet Autism Speaks can’t even manage to meet this one basic qualification.  They have never had an autistic member on their board.  Their current board consists of parents, including one who founded SafeMinds, which has contributed to the anti vaccination movement, as well as another board member who used be a board member for Cure Autism Now. To view the full list, click here. To view a list of other leadership in their organization, click here.

The only autistic person high enough up in their leadership to be worth mentioning was John Elder Robison, author of Look Me in the Eye: My Life with Asperger’s Syndrome and part of their science advisory board.  He resigned his position in November 2013, a decision he spoke about on his blog.

Autism Speaks spends just 3% of the money they raise back into helping families and autistic people.  This comes in various forms, and not all of it is aimed at actually helping autistic people.  Some of it is aimed at communication devices for autistic children and teenagers, and this is of course a very good thing.  Much of it is also aimed at providing ABA therapy for autistic people, which is a behavioral intervention that much of the autism community opposes, particularly autistic people who are now adults who were subjected to it as children.  Some accounts of this are here, here, here and here……………..

The rest of the article is on The caffinated autistic

I’m Autistic, And Believe Me, It’s A Lot Better Than Measles

Vaccines don’t cause autism. But even if they did, is being like me really a fate worse than death?

The autistic brain is not particularly good at understanding irony, and yet most people I’ve met on the autism spectrum have, over time, developed a pretty strong grasp of the concept. Many of us have even managed to teach ourselves how to wield it. I’ve begun to suspect that this is due to our constant hands-on experience.

Having an autism spectrum disorder in an ableist world means that you’re constantly exposed to cruel irony. Most frequently, this comes in the form of neurotypical (i.e. non-autistic) people who tell you, incorrectly, that you can’t or don’t feel empathy like them, and then stubbornly refuse to care about your feelings when they claim that you’re lost, that you’re a burden, and that your life is a constant source of misery for you and everyone who loves you. There’s also my current favorite: parents who are willing to put the lives of countless human beings at risk because they’re so afraid that the mercury fairy will gives their kids a tragic case of autism if they vaccinate. Gotta protect the kids from not being able to feel empathy — who cares whether other children live or die?

No matter what other lofty ideas of toxins and vaccine-related injury anti-vaxxers try to float around in their defense, that’s really what all of this is about: we’re facing a massive public health crisis because a disturbing number of people believe that autism is worse than illness or death. My neurology is the boogeyman behind a completely preventable plague in the making.

The rest of the article can be found on https://medium.com/the-archipelago/im-autistic-and-believe-me-its-a-lot-better-than-measles-78cb039f4bea