Shake any given tree in this country and a half-dozen “allies” of “persons with autism” fall out. Many of these people are well-intentioned parents, family and friends of autistic people who want nothing more than to help those they love. However, the language used to describe autism has been so inflammatory that many of their best-intentioned efforts have hurt rather than helped. Sadly, much of this language emanates from organizations that claim to care about autism. While I could not hope to cram a complete list of problematic organizations into this article, a short list can profitably summarize the famous and egregious offenders.
Autism Speaks (A.S.): Belonging firmly to the cure-seeking faction, this monolithic monstrosity has turned fear-mongering into a profitable and popular enterprise. While the group is hardly as virulent as certain fringe groups, their aura of respectability has allowed them to collect millions in donations by stigmatizing autism. A.S. presents autistic people as 6 year old pity cases to be studied and cured, and has a full-time staff member tasked mainly with keeping adult Autistics from successfully attacking the brand. The vast majority of their funding goes to “cure” research, employee salaries and “awareness” campaigns that present autism in a horrific light. A mere 4% goes to helping families with autistic children, and Autistic adults are ignored or even actively silenced. This group is so hated I once witnessed a car full of autistics roll down the windows and “flip off” an A.S. building. Further inquiry revealed this to be a popular tradition. Bottom line: don’t donate to Autism Speaks. Your money will be used to suppress autistic voices and make their lives harder, not help them.
Jenny McCarthy/Generation Rescue/Age of Autism: These three are somewhat interchangeable. All belong to the “vaccine-conspiracy” branch of the anti-autistic community. They believes autism is caused by vaccines (despite massive evidence debunking this). To these people, Autistics are neither equals nor pity cases. Autism is seen as an aberration; one so terrible, allowing their children to die from preventable diseases is preferable to vaccinations and “risking” autism. They have the markings of a religious cult or a world-class conspiracy theorist organization. Any evidence just bounces and their motto is: “the absence of evidence is not evidence of absence.” I had the displeasure of encountering a “true believer” recently and was struck by his myopic focus on “curing” Autistics at the expense of logic, reason or civility. My suggestion that perhaps a cure was unnecessary was treated with absolute incredulity. Bottom line: When faced with someone from this persuasion, make calming noises while backing away slowly. They are clearly not playing in the same universe as the rest of us. Things like “evidence,” “proof” and “reality” are all optional.
Hard-core “cure” groups in general: There are a number of organizations pushing “cures” that they claim have already been discovered. These range from the insertion of bleach through the oral or anal cavity to chelation (removal of heavy metals that can result in death). These “cures” are based on quack science, and have literally scarred and killed children. Supporters have been known to threaten the lives of autistic adults for protesting their actions. Bottom line: if you’re trying to help Autistics and people start talking cure or recovery, run. Future cures are largely unwanted, current “cures” kill.
Safe places to turn: While these groups retain a lot of power, occupying a powerful place on the political agenda of the United States and frequently receiving attention from the media, there are a growing number of autistic-friendly organizations. For example, the Autistic Self Advocacy Network (A.S.A.N.) is run by self-advocates, and every self-advocate I know has nothing but praise for their efforts to make the world a safe place for neurodiversity. Bottom Line: Before donating or supporting, look for Autistics on the board and in positions of real power. If they don’t have that, don’t get involved unless you want to help maintain the current suppressive system.