I wrote a response to that email, which appears to have been taken into serious consideration, and I am hopeful that Holy Cross will decide to put its time and effort into more worthwhile and constructive efforts to support the autism and Autistic communities. This is my response to the email I received. After reading this, please consider writing polite and diplomatic letters to the College of the Holy Cross urging them to develop and participate in more positive and constructive initiatives supporting the Autistic community. If you write a letter, focus on the positives -- the response that I've received was positive, so more positive prodding may prove to be beneficial, whereas angry letters may hurt the potential to produce something constructive.
TASH New England hosts its annual conference at Holy Cross as well, so please urge them to support organizations like TASH or the Autistic Self Advocacy Network or the Autism National Committee or Autism Network International.
Dear Father Boroughs,
Thank you for writing. I appreciate your commitment to supporting the cause of advocating for Autistic people and the issues that affect us, and I strongly support your willingness in reaching out to those of us with a vested interest in autism issues. As Dr. Lord may have told you, I am Autistic myself, and am deeply involved with the autism and Autistic communities as a self-advocate, that is, as an Autistic person who is also involved with advocacy.
I realize that it's probably too late to cancel "lighting it up blue" for Autism Speaks, but I am very disappointed to see that you have chosen to support an organization that nearly all Autistic adults do not support and cannot condone. I cannot condemn Autism Speaks strongly enough.
Autism Speaks routinely excludes Autistic people from discussions about us, and to date, has not one single Autistic person in its leadership either nationally or locally. This goes against the principles of the disability rights movement, where organizations representing people with disabilities have many people with disabilities represented in their leadership, if not running and directing the organization altogether. In response to criticism over this, Autism Speaks appointed one Autistic adult to one of their advisory boards two years ago, but this is one Autistic person on a board with twenty-nine other people, none of whom are Autistic. There remain no Autistic people involved in the actual administration and direction of the organization.
Autism Speaks has repeatedly used inaccurate and offensive material as marketing and fundraising tactics, including their public service announcements. One of their earlier PSAs, "Autism Every Day," featured their former Vice President Allison Tepper Singer on camera saying that she considered driving off a bridge with her three year old Autistic daughter and that the only reason she did not do so was because she had a non-Autistic child as well waiting for her at home. Her Autistic daughter was in the room when this was said, and this was aired as a PSA. In a more recent PSA, "I Am Autism," images of Autistic children and their families are set to a voiceover claiming to "be Autism," and saying things like, "I will destroy your marriage. Your child will never have friends."
Autism Speaks's ultimate goal is to cure autism and create a world where Autistic people like myself no longer exist. Most Autistic adults and youth strongly oppose the idea of "curing" ourselves because we do not believe that we are defective, broken, diseased, or in need of being fixed. Having a disability does not mean that there is something wrong with us. Yet because Autism Speaks does not represent Autistic people or speak for us, they can put their efforts into looking for something that most of us do not want. This includes Autistic people who are visibly disabled, severely disabled, and non-speaking, as well as Autistic people who do not present as very disabled.
Autism Speaks claims to provide family and community services, but in fiscal year 2010, they provided about $50,000 in grants for family and community services, while giving over $16,000,000 in grants for research, nearly all of which was to find a cure for autism. There are critics of Autism Speaks even among those who do want a cure for autism -- whether or not one wants a cure for autism, there is not a cure now, and much of that money could be going to much better activities, such as research on pragmatic topics and issues that affect Autistic people now, or providing services and supports for Autistic children, youth, and adults.
Additionally, Autism Speaks implicitly and tacitly allows dangerous misinformation about the science of autism to spread, such as the repeatedly debunked claim that vaccines cause autism. People in the anti-vaccine movement have caused numerous outbreaks of preventable and nearly-extinct diseases in the United Kingdom and the United States for fear that vaccines will cause their children to be Autistic. Children have died because of this. Former Vice President Allison Tepper Singer, who appeared in the "Autism Every Day" public service announcement, actually resigned from Autism Speaks because they refused to publicly and unequivocally take a stance against such false and dangerous scientific misinformation. (That does not, however, excuse the fact that she has to this date refused to apologize for the statements she made in that video.)
The majority of people do not know that there is such controversy with Autism Speaks because most people assume that any organization dealing with autism must be doing good things for the community. Bob and Suzanne Wright are very wealthy people with many connections, which is certainly one of the reasons that Autism Speaks has grown to be so influential and powerful in the community. Most people who support Autism Speaks are unaware of how offensive and demeaning their practices and language are to actual Autistic people. At the same time, organizations run primarily by Autistic people or that meaningfully include Autistic people, tend to be much less well known and have much less public attention.
As I said before, I am deeply appreciative of your interest and commitment in engaging the autism and Autistic communities and supporting efforts to raise awareness of the issues that affect us, but I cannot and never will be able to condone the support of any campaign launched by Autism Speaks.
"Light it up blue" does nothing to help Autistic people or bring attention to the most important issues facing our community. The color blue in relation to autism can only be seen in Autism Speaks's logo -- a blue puzzle piece -- and has nothing to do with us. We prefer to be thought of as people, not puzzles. This campaign is offensive and alienating to us rather than supportive of us. I strongly encourage you to consider alternative means of supporting the autism and Autistic communities, such as hosting roundtable discussions with Autistic self-advocates and our allies, sponsoring talks by leaders in the autism rights movement, showing documentaries such as Loving Lampposts: Living Autisticor Wretches and Jabberers, or adding material about autism rights and neurodiversity into any disability studies coursework on campus.
Thank you again for writing and reaching out to me, and please don't hesitate to contact me if you have any further questions or concerns. I hope to hear back from you.
Blessings and peace,