When Charity Taketh Away
How Autism Speaks stole income from working Autistic people
This past week I presented at a conference in San Diego called Love and Autism. The conference was put together by the amazing professionals at The Family Guidance and Therapy Center of Southern California.
I have spoken at many conferences, but this one is the most unique I have experienced so far. At this conference, the narrative is led by people with Autism.
In an attempt to shift the narrative to one of love and acceptance with Autistic people at the wheel, this conference features mostly Autistic presenters. Each one of us shared our unique ways towards independence, academic success, career success, and stories of overcoming the odds. There are no talks of cures, nor any talks presenting methods of normalization. The conference is filled with positive energy and hope for young autistic people and their families.
Beyond the perspective this conference spotlights, they are also among the very few who pay Autistic people to speak.
Autistic people are invited to present their stories for the benefit of others quite often, but are rarely paid. When you attend a conference, only the headliner speaker – the big famous person you likely attend to hear – is the only one paid a contracted rate. At most of the breakout sessions, the presenters are there on their own dime, including people with Autism. This is the industry standard.
Most conferences make up for this by providing a table in a common area where presenters can sell books and other products, giving us an opportunity to advertise our work. The book sales, for many autistic speakers, are our only source of income, particularly at a conference. Even when conferences pay, it is usually a small honorarium making the book sales the only way for us to do more than break even. It allows us to pay our own rent.
As a female on the spectrum, I am one among thousands of Autistic women who struggle much harder than Autistic males to be valued and heard. Many of us share the common story of being rejected from big house publishers under the guise that there are not enough readers interested in female Autistic narratives. Books written about normalization techniques or praising therapies such as ABA are much more likely to be considered. However the memoirs published are mostly by males.
This means Autistic females, and Autistic LGBTQ, must be more self-sufficient and industrious. Many of us have turned to the self-publishing world putting our homemade books at competition with the big house publishers. Limitations for self-published books can be too difficult for some to overcome, especially when big house publishers have teams of talented people making the book look good, sound good, and can market it in stores around the globe.
Those who self-publish, as I did, must do everything themselves. My book, I Am Snamuh, was completely homemade. My 15 year old daughter took the photos for the cover. We laid out the book ourselves, and commissioned friends and family to proofread. Each page layout, the cover bleed, cut, and all printing specifications had to be carefully considered. I spent hundreds of hours creating my book.
Listed on Amazon.com, I only profit a few dollars from each sale. Amazon does not advertise for me, and in fact prioritizes big house publishers because they pay for more exposure, something I cannot afford. My book is not on the book shelves because most booksellers do not allow self-published books in store. Except in the rare cases where self-published books become best sellers, most of us make very little on our work.
When I present at conferences my books sell very well, and often times I sell out. Conferences are my opportunity for people to get to know me, and to hear my story. Once the audience has connected with what I have to say, they are eager to buy my book. To provide books at conferences, I must buy each copy out of pocket and pay to have it shipped to me. I can only buy what I can afford up front, which is usually a small amount of money I have held back from previous book sales. Whatever I do not sell, I must take home with me. I must sell 20 out of 50 books to break even. So, you can see why it is imperative that I sell out if I wish to walk away with an income. For the 30 books, I would gain $300.
I was not the only Autistic person selling books at this conference.
Enter Autism Speaks
The Love and Autism Conference released their dates to the San Diego community over a year ago with the conference locations to be at the Liberty Station Conference Center. After the conference was announced, Autism Speaks scheduled a fundraising event 700 metres from the conference pulling sponsors and attendees from our event. (Link to Autism Speaks website showing San Diego Walk at Liberty Station)
No matter how we look at this, Autism Speaks stole income from hard working Autistic people trying to be independent. Even if the act was not deliberate, how is it that an organization that declares itself a charity to benefit autistic people not know that such an important event FEATURING Autistic people was occurring 700 metres away? In fact, the amazing people who ran the conference dipped into their own pockets to be sure every Autistic was paid.
I have tried many times in the past to invite Autism Speaks to the table to talk about how they can truly help us. I have encouraged members of the Autistic community to attend Autism related events even if Autism Speaks is present, to show them we have a voice. Time and time again I have tried to find middle ground with Autism Speaks.
Yet Autism Speaks keeps robbing the Autistic community.
Here you can view the Facebook post I made about it
How you can help
Please help the Autistic people who lost earnings at the conference by doing business with us. Hire us to speak, purchase our products, share our stories on social media, and encourage print and television media to feature our voices.
For a complete list of the speakers who lost wages, visit the Love and Autism website – https://www.loveandautism.com/speakers/
Please also consider donating to The Family Guidance and Therapy Center of Southern California for their support of Autistic people, even at their own loss.