We know that nonprofits often are the center of controversy because of questionable, unethical or even criminal conduct. For awhile, in the autism community, a raging controversy has existed. Parents of autistic children and autistic adults (self-diagnosed or officially diagnosed) have frequently been at odds with each other. The nonprofit in question is one widely trusted and supported by many families with autistic children, who have been born anytime during the past two decades and who were diagnosed in childhood. The split is based largely on how autism is seen, whether it is viewed as a disease that was caused by vaccines, or is viewed as a neurologically diverse condition. The controversial nonprofit is the best-known and largest autism nonprofit that I'm aware of.
What Is Behind the Autism Speaks Controversy?
Autism is a complex disorder that is still little misunderstood. The official diagnosis of ASDs have been around for about two decades. That is, before that, autism was only diagnosed in people who manifested severe autistic traits, called "classic autism." (Though classic autism exists in degrees just the "mild" Asperger's Syndrome exists in degrees). Many of us adults have self-identified ourselves as being possible ASD and more are being diagnosed in adulthood. Autism Speaks garners support mainly from parents of autistic children, as Autism Speaks has lots of resources and public relations to advance their agenda of promoting autism research "in search of the cure for the autism epidemic." In other words, the past two decades of diagnosed autistic children are seen as "suffering from an epidemic" and autistic adults who grew up before the "age of the autism epidemic" are hardly recognized. What does that premise add up to? It screams the message to autistic adults: You do not matter, or worse, You are imposters. Hence the hostility by so many.
My Experience With Autism Speaks
When our daughter was first diagnosed autism Pervasive Development Disorder-Not Otherwise Specified (PDD-NOS), my family and I were uninformed about ASDs. Until she was diagnosed at almost three years old, our main knowledge of ASDs was thin. As a child, I was exposed to children with classic autism and later, I went to school with peers whom I wonder would have been diagnosed with ASDs had the diagnosis been around. Because of this, we supported Autism Speaks. When they came to St. Louis, MISSOURI, to sponsor a walk one year, my spouse, daughter and I took part. However, when I self-identified myself with an ASD, set about to access an official ASD screening, and created an online Change.org autism petition for services, I came to withdraw my support of this nonprofit. My family still support it, as they still insist on viewing ASDs as a "deviance" that needs a "cure" or can be "outgrown." Our daughter, praise God! is doing very well, being mainstreamed, well-behaved, loved by her teachers, and makes good grades in middle school. Because of these happy facts, family members say that she "has outgrown her autism." I contend that her autistic traits are being modified and controlled and she is operating from her strengths. I had contacted the nonprofit about my autism petition, but though I got a response saying they would consider it, they did not follow up. I was aghast that, later, they created their own version with the focus calling for more research funds! My version calls for research funding, but focuses much more on services. But enough on me.
In the past weeks, there have been anti-Autism Speaks boycotts on the Internet, Facebook and Twitter. The hostility toward Autism Speaks has become a movement among factions in the autism community. It has garnered much more passion, sadly, than positive efforts, like mine and that of others, to get funding for autism services for all those who desire them. While I sympathize with autistic individuals who have been hurt by or are mad at Autism Speaks, I believe that our time and energy would be most effectively spent in positive action banding together and exerting pressure on the US government to fund autism services, especially for neglected autistic adults. That is what my autism petition has been meant to do. However, while many in the autism community have supported it, more seem much more passionate about ranting about the evils of Autism Speaks. I find this unfortunate, though I so understand!
To my friends in the autism community I ask: Isn't it better to champion what we are for than to rail at what we are against? What are you for?
Autism Speaks
Boycott Autism Speaks
John Elder Robison's statement about resigning from Autism Speaks
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