April is many things. It’s the month of Easter, most of the time. For students, it’s the month of spring break. It’s the month George Washington became the first president and the month Chernobyl exploded.
Fifty-one years ago in April of 1970, the Autism Society decided to hold the first autism awareness month. That was seven years after the puzzle piece symbol was first designed, a symbol that many autistic people have grown to detest over the almost 60 years since its creation. Today, Autism Speaks is the primary autism organization in the United States, and it has ensured that the month continues.
Despite repeated efforts by autistic people to change the narrative around autism awareness month, including efforts to rebrand it to autism acceptance month, efforts to push back against the typical blue color and puzzle piece of Autism Speaks and more have generally failed to influence the masses.
Autism Speaks was founded in 2005 by Bob and Suzanne Wright after one of their grandchildren was diagnosed as being autistic. That effectively set up the intent of the organization for the next 16 years; it has only ever been an organization by, and for, the parents and grandparents of autistic people and never for the autistic people themselves.
The organization has faced many controversies over the years, from the fact that there is not one autistic person on their board, to their commercials which display autistic children as monsters who drive apart marriages, to the fact that in 2010 they still wouldn’t say that vaccines didn’t cause autism and to the fact that, until 2016, their mission statement still included a desire to cure autism; something which has been heavily denounced by autistic people.
However, perhaps none of those things have been more substantial than where the money that goes into the organization ends up. April has always been an important fundraising month for Autism Speaks, what with it being a month meant to support the individuals that their organization is meant to be supporting.
Charity Navigator notes that the organization made $56 million in “Contributions, gifts, and grants” in 2018, with another 3 million coming in from Fundraising Events. The amount of money going into programs has trended downward in recent years; in 2014, it was 42 out of 57 million, or 73.7% of the organization’s funds. In 2018, it was 30 million out of just under 60 million, just 50%.
Even in 2016 and 2017, when revenue dipped to 47 and then 50 million, the amount of money for programs was higher than in 2018 when revenue shot up almost 10 million dollars. Despite the fact that Autism Speaks is meant to be a charity supporting autistic people and their families, that often doesn’t feel like what they’re actually doing.
Many of the things the organization has continued to support, such as Applied Behavior Analysis or ABA therapy, are actively harmful to autistic people. Despite the fact they have made some changes for the better, including their removal of the word “cure” from their mission statement, the organization has still promoted incredibly harmful ideas.
The fact that ABA remains legal and is now required to be covered by many insurances, for instance, is largely a result of lobbying by Autism Speaks. Despite the fact that the organization has been told over, and over and over about the harm of this “therapy” they continue to vocally push for it and support it.
Why? Because Autism Speaks has never been an autism organization. It’s never been an organization for autistic people which is why so few autistic people have been in positions of any power within the organization. It is, as it was founded by, an organization for the relatives of autistic people. And for far too many of those people, the idea of a child behaving in a more neurotypical way is worth subjecting them to therapy that is virtually universally opposed as cruel and harmful by the autistic community.