Boycotting Autism Speaks is not enough.

WPIniI 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.

The Autism Industry and the Glare of the Blue Light

The Background, and My Own Struggle

I read an article in USA Today last May that touched me very deeply.  AP Medical Writer Lindsey Tanner reported that 1 in 3 Autistic young adults “…have no paid job experience, college or technical school nearly seven years after high school graduation.” [1]  I wish I could say I was shocked, but as a person with autism, I knew this statistic to be true, and was certainly echoed in my own life.

At 36 years of age, I have an education history that includes dropping out of high school as a Sophomore, and dropping out of college – twice.  I am not skilled at anything domestic, which was pushed on young women in my region.  I was also unable to obtain basic work skills often needed for wage work, or obtain the necessary social skills to “sell myself,” a skill that could make my small business much more profitable.  On paper, I am unable to compete with  my NT (neurotypical) peers, though I certainly have tried.

Off the paper trail, I am rather accomplished; I can play 7 instruments, 3 on a professional/competitive level, I have self-published two books doing everything from layout, to editing, to cover design.  I have composed dozens of songs, listed a single on iTunes, performed on national television, spoken to thousands of people about autism, and taught hundreds of children to play the violin and viola.  In my filmmaking endeavors, I have created numerous films, doing literally everything myself. And I am only talking about the last 2 years.

My yearly salary for 2013 – $10,000.  Even in the years of a “good economy” I have never earned over $15,000 in one year.  I do not have a savings, 401K, insurance, or an incorporated business that holds cash.  My parents pay my mortgage, and I do not receive disability pay, as I live in that wedge between government definitions of abled and disabled.  I am also a single mother, with my children residing with me full time.

Autism Industry

There are so many non-profits out there raising money for autism, that I cannot begin to list them all.  Many of these organizations have humble roots, beginning with a single family who wanted to do something good for autism.  As these non-profits grew, they went from a family or mission like structure, where a few people take on multiple responsibilities, to a corporate structure with multiple layers of middle management, and a high paid CEO.  They adapt the idea that in order to bring in money from high dollar individuals, they must have their own high paid CEO playing the “prestigious wealthy” guy.

All of this structure costs an organization money, scraping from the top as the funds pass down through the corporation, and leaving a fractional amount to the intended beneficiary – the person with autism.

Don’t agree?  At the risk of ridicule, let’s consider this.  An Autism non-profit collects money, often in the millions of dollars.  They pay their own employees, who work to send the money to other foundations.  Each one of those foundations have their own staff to pay, and overhead costs to cover.  What is left is sent to pay for the services or research those foundations support.  As the money is handed to hospitals, labs, or services for an autistic individuals, the remaining money pays the salaries of the people who provide those services.

Rarely, is money handed to an autistic individual to cover food, clothing, housing, a college education, or start a business.  In fact, I do not personally know an autistic person who receives money from foundations for the things I have just listed.  I am not referring to subsidized group housing or canned goods either.  I am talking about housing and food that NT people would find for themselves.

Let me be more specific (and ultimately get myself in more trouble.)  Autism Speaks reported earning $60 million from fundraising in 2011. [2]  Researchers believe that the autism prevalence rates can be anywhere from 1 in 88, to 1 in 50.  This means, at the least, there are 3.5 million people in the United States with autism.  If I were to take the donations to Autism Speaks, and put it directly in the hands of every autistic person, every autistic person in America would be a millionaire.  That is taking money from one single organization, raised in one single year, in a bad economic climate.

What about the good they do?  What about a cure?

I am not going to stand on a precipice, and call out judgment.  My goal here today is simply to point out that many, many, many people are making a very comfortable living off of autism, while most of the adults with autism live well below the poverty line.

People and families with autism are motivated on their own, to act in their own self-interest.  Some seek a cure, some seek treatment, but many of us just need a good education, a supportive community, and an opportunity to work.  Most of us are far more capable of being well paid, productive citizens, and a huge portion of us have incredible, native talents.

Yet many of us are paid low wages to file papers and clean floors.  Most of us work unpaid for our expertise on autism when invited by these mega-million non-profits to speak, teach, or answer parents questions about autism, while the NT experts are paid hundreds to present research at these same events.

There is an imbalance here that must be addressed.

Many autism organizations make money off of a very specific set of limitations perceived in autistic people, many which are illusionary.  We group traits into medically acceptable terms: milestones and talents into “special interests,”  exceptional work ethic and job focus into “lack of interest in peers,” and the verbal communication we muster out as “inappropriate comments or monologuing.”  How many of these mega-million non-profits for autism employee autistic individuals in salaried positions?  How many mega-million non-profits for autism have an autistic CEO?  To say that none of us are qualified to hold the position of CEO is a myth, just as it is a myth when people say there are no qualified women or people of color to be CEOs.

What Can I Do About It?

Simple.  Here are a few ideas:

1) Give to small organizations in your local community that are doing hands on work for autism.  Such organizations in my area are Shenanigans [3], Spectrum [4], and Georgia Autism Conferences [5] (who have been tremendously generous to me and are a huge part of my growth).

2) Get involved with organizations that are OPERATED by people with autism, or serve to empower independent lives in people with autism.  Autism Self-Advocacy Network [6] is such a place, and even provides a list of projects that you can help.

3) Be patrons of businesses that have autistic employees.  Being involved in local advocacy groups will often connect you with places that employee autistic people.  Also, don’t be afraid to ask.

4) Help build Autistic owned businesses.  I am autistic, and I own and operate my own business.  However, my poor executive functioning and lack of business social skills make it difficult for me to do secretarial work, apply for grants, or network socially.  Help people like me by funding projects, offering free or low-cost services to get us started, or offer grants to us to start on the right foot.  Such donations will be far more rewarding and satisfying because you get to see your efforts grow first hand.

5) Develop full college scholarships for people with autism.  Often times, we do not qualify for merit based scholarships, especially if we are coming from a school system that was unable to properly support us in grade school.  A college education ensures that we will be working in an area where we excel.  My only reason for dropping out of college is lack of funds.  I am still being harassed by collection companies for my federal student loans which I cannot afford to repay, since I divorced and never finished my degree.  I paid for all my college costs, I received no scholarships, and now my credit is ruined.

6) Parents, don’t hide your child’s autism under a bushel.  Let it Shine!  Believing in your autistic child and being proud of us, helps us build the necessary self-esteem to deal with the bullies of life.  For me, saying to people, “my son is autistic” is just like saying he is a boy, or he has red hair.  If you’re not embarrassed,  the child grows stronger, and the world learns acceptance.

There are plenty more things you can do, you just have to look past the glare of the blue light to see those of us in the shadows.  Get local, touch autism in person, and you will see an unparalleled beauty of gratitude.

References

[1] http://usatoday30.usatoday.com/news/health/story/2012-05-14/autistic-young-adults-jobs/54954292/1

[2] http://www.autismspeaks.org/sites/default/files/documents/as_annual_report_2011_web_12-13-12_final_03.pdf

[3] http://www.shenanigansimprov.com/

[4] http://www.atl-spectrum.com/

[5] http://www.georgiaautismconferences.com/2012/

[6] http://autisticadvocacy.org/projects/