I write quite a few letters to organizations, companies, and individuals in the hope to bring an autistic’s perspective to issues surrounding autism. In general, the responses I get fit into three categories: dismissive, angry, or (most often) silence. What follows is a copy/paste from an email I sent to a company that had product placement at this years AutismOne conference. I did not write expecting them to be able to pull out of the conference on two days notice, but wanted to change their perspective in the future. What unfolded was the most open email exchange I’ve encountered so far. Therefore, I have redacted the companies name so as to not put them in the line of fire on an issue that has so many emotionally charged supporters on both sides. Please read through to my thank you notes at the end. I could not do this without the brilliant work of these writers.
I am Bridget Allen. I am an autistic woman living in north Texas where I spend much of my time being a mother and grandmother. I am a huge fan of your products. A quick inventory of my refrigerator yesterday showed fully one third of the products inside bore a (your) label. As a vegan in Cowtown, y’all are a lifesaver. Last night, I received a direct message on Twitter asking me to outline my concerns with your support of the upcoming Autism One conference. My issues with Generation Rescue and the Autism One conference are threefold.
First, many speakers at the conference espouse an anti vaccine agenda that has been widely debunked by objective scientific research. (see American Academy of Pediatrics http://pediatrics.aappublications.org/content/123/1/e164.full ) This endangers all children, not only those not vaccinated who risk contracting potentially lethal illnesses, but also those compromised by a weakening of herd immunity.
Second, this conference is full of proponents of risky and excessively expensive “treatments” that prey on the fears concocted by images of autistics as ‘stolen children’ who are damaged and broken. (http://blogs.plos.org/thepanicvirus/2012/05/15/more-media-stupidity-chicago-sun-times-runs-propaganda-piece-for-jenny-mccarthys-anti-vaccine-conference/) Speakers include the likes of Mark and David Geier, two men drummed out of the medical community for autism treatments that consisted of chemically castrating young autistic boys. (http://leftbrainrightbrain.co.uk/2011/05/maryland-board-of-phyicians-mark-geier-endangers-autistic-children-and-exploits-their-parents/) Children’s health and futures are put at risk by these treatments while their parents are bankrupted paying for them. In addition, Autism One does not have a history of welcoming discourse or even open coverage of their event. Here is a synopsis of some of their reactions to those who do not completely agree with them (http://lizditz.typepad.com/i_speak_of_dreams/2011/05/autismone-again-expells-peaceful-non-disruptive-registered-attendees.html)
I have a twelve year old autistic son myself. While he has been given speech, occupational, and physical therapy to compensate for some aspects of this developmental disability, we have never emptied out our savings and little of his services took place outside of school hours. He has simply been a boy learning how to be the best version of himself he can be. The result has been an advanced studies honor student who has friends, creates art, and takes preAP courses to further his goal of becoming an entomologist. I firmly believe if I had treated autism like a tragedy, he wouldn’t be thriving today.
Finally, organizations like Generation Rescue and events like Autism One thrive on a false narrative that autism is a tragic illness affecting children; robbing them of the ability to love, connect, and function. In reality, autism is a developmental disability. It does not go away. It cannot be cured. Autism in adults looks different than it does in children because as we grow up we learn just like anyone else. We mature, we develop coping strategies, and we adapt. Is it often difficult? Certainly, but that doesn’t mean we are any less valid as humans. We have real contributions to make to society. Disability rights are human rights.
This narrative is a prime contributor to the denial of basic rights. It dehumanizes the very people it purports to want to help. It may be hard to imagine, but frequently autistics and other developmentally disabled people are killed by parents and other caretakers. When this happens the sympathy is reserved for the person who committed the violence rather than the victim. I recently lead a local vigil of honor and remembrance for those our community has lost. (http://www.prweb.com/releases/2012/3/prweb9329098.htm)
I truly appreciate your time, and thank you for the opportunity to express my concerns.
Many thanks to:
Seth Mnookin – Before he wrote great stuff about autism and vaccines, I already had my fangirl hat on because of Feeding the Monster.
Sullivan from LBRB – who manages to be both rational and engaging. That’s harder than it looks.
Liz Ditz – who says things I want to say, but better and with a lot more guts.
Dr. Paul Offit and Charlotte A. Moser
Danielle A. from ProfMomEsq – who was a link providing machine at a time when I had 10,000 things on my plate. Granted, she had 10,015 things on her plate, but she is a better plate spinner than me.
Ari Ne’eman – who responded to my link request within minutes of asking. Great motivation.
Additional thanks to the Thinking Person’s Guide to Autism. In the course of my email exchange, I was asked for some sources for evidence based information and services for parents new to autism. I was thrilled to be able to have one source that provided everything I was asked about. What you have created is invaluable.