I am Laura Nadine, entrepreneur, single mother of two children, and I am autistic. Autism has made it into the news quite a bit over the past decade, and most recently under the hashtag #BoycottAutismSpeaks. Despite the seemingly sudden growth of Boycott Autism Speaks, this fight is not new.
Back in May of 2013, I composed a blog post entitled The Autism Industry and the Glare of the Blue Light, warning about the poor business practices of organizations like Autism Speaks, and the ever growing multimillion dollar autism industry allowing organizations to pocket over-inflated salaries by using scare tactics and propaganda. But I thought I was alone in my stance, often ridiculed by parents of autistic children, and at times even told to keep my opinion of Autism Speaks to myself when speaking in public.
What led me to post against Autism Speaks? It started in September of 2009, when Autism Speaks released their I Am Autism video, painting a picture of despair and suffering in the lives of autistic people. This video used the scare tactics common in the Autism Industry, and caused such a backlash that Autism Speaks eventually pulled the video.
Following the video’s release, I spent time researching Autism Speaks and how they spent their money. I spoke with local organizations to see from whom they received their funds, and what services they lacked due to poor funding.
Finally, by 2013, I decided to make my position official by writing about it on my blog. This move cost me making 2013 my poorest year to date, and nearly forcing me to close down my business.
I looked to others in my local autism community to speak up, But the conversation had grown silent. People were afraid to speak against the autism industry. They were afraid of losing what little funding they did receive.
You see, back in 2009 when Autism Speaks released their I Am Autism video, organizations comprised of Autistic individuals such as Autistic Self Advocacy Network (ASAN) were in their infancy. Non-speaking people with autism were often kept in restrictive programs with little or no access to supports that presumed competence in the person with autism. Instead, many members of the autistic world were kept silent, assumed incompetent, and often medicated to the point of lethargy.
But, because of organizations like ASAN, and the continually increasing network of autistic people, our voices are growing louder. Methods like RPM (rapid prompting method), a method that teaches non-speaking autistic people to communicate with a letter board, and increased access to assistive devices such as tablets and smartphones, previously excluded autistic people are now joining the movement.
What movement is that? Empowering people with autism.
Despite the growing movement, Boycotting Autism Speaks is simply not enough. So what can you do?
In my article on the Autism Industry, I gave a few suggestions. But it all essentially boils down to redirecting your funds to organizations that include autistic people in their decision making. Organizations such as ASAN can always use funds to help improve the quality of lives of people with autism. In my hometown of Atlanta, organizations such as Shenanigans, The Hirsch Academy, and Spectrum are hands on organizations that use their funds to develop strong, autistic voices.
But I want to see even more.
A few years ago I sought out a way to give to and recognize autistic people without the red tape often associated with government programs. I outlined a way to give to autistic people directly, calling it the gift of the White Phoenix.
Shortly after, I created the White Phoenix Award, an award given to special needs students who have shown tremendous effort in school, but still could not get the high grades necessary to be recognized with academic awards.
Now, I want to grow this idea into the White Phoenix Initiative.
The White Phoenix Initiative is a call to action for colleges, universities, and community programs to sever their ties with the Autism Industry, and lean away from the cure model, embracing instead the achievement model.
Universities, such as Georgia Tech, CALTech, Yale, and the hundreds of other institutions of higher learning across the globe could unite with ASAN and autistic individuals to help make college more accessible.
Organizations such as the Bill and Melinda Gates Foundation, Google, Amazon, and Apple Computers could funnel donation dollars into college scholarship programs for people with disabilities who often cannot qualify for most existing merit based scholarships.
People with autism, and achievement model based organizations, united together under the symbol of the White Phoenix, could help Autistic people regulate organizations meant to help us. Much like the USDA stamp on food, the White Phoenix could be used as a way to symbolize the trust of autistic people. An autistic seal of approval, if you will.
To help this grow, we have to unite the voices of autistic people with large scale organizations that have the finances to grow programs quickly, and the desire to see us succeed.
Therefore, I encourage any of the organizations I have so far mentioned, to contact me to organize a meeting to take place on google hangouts. Our purpose would be to initiate the use of the White Phoenix stamp of approval to help people donate to trusted autistic organizations instead of Autism Speaks.
Like the Phoenix, we can rise from the ashes. Our united voices are white hot, and burning a lasting movement of change into the global consciousness.
So let’s rise, let’s unite.