Monday, March 25, 2019
Come On Cousins
The task of Autistics Speaking Day has always been to amplify autistic narratives that might not otherwise be told, in order to dispel the stigma and stereotypes surrounding autism, and to fight back against awareness campaigns that speak empty words. Given the overlap in our communities, we feel it is important to support our ADHD and other cousins. Therefore, ASDay supports this statement made to the Center for ADHD Awareness, Canada.
March 25, 2019
To the Center for ADHD Awareness, Canada (CADDAC), Heidi Bernhardt, Patrick McKenna, Tazz Norris, Rick Green, Simon Rakoff and Zoe Kessler:
It was so exciting to hear Heidi Bernhardt on CBC, talking about CADDAC’s long-term awareness campaign “to get people talking and break the silence about ADHD,” and to know that so many more neurodivergent people and their allies will be able to hear and see first-person stories that will dispel the myths and stereotypes about ADHD.
We applaud CADDAC for prioritizing the voices of ADHDers and give a standing ovation to those who have shared their stories with each other and the world!
As ADHDers and autistics, we go way back! Since 1993, the term “cousins” has been adopted to refer to people whose neurodivergent similarities unite them, regardless of diagnoses. Many in our communities see ADHD and autism as cousins; many belong to (at least) both communities and learn from each other’s unique ideas since we often overlap in our need for support around executive functions, experience of social stigma, and out-of-the-box creativity.
We also often have a shared struggle to accept ourselves on our own terms, often in the face of misunderstanding and shame. That’s why we wanted to reach out and let you know that it is disheartening to hear that “#ADHDSpeaks” is your campaign’s hashtag.
Many non-Autistic people are shocked to hear that Autism Speaks, the largest autism nonprofit in the world, is overwhelmingly condemned by autistics ourselves. We have organized for years to challenge its offensive language and support of eugenics, calling for boycotts of its sponsors, protesting its events and speaking out. We came together as autistic people, self-advocacy and allied organizations to ask you to stand with us in solidarity by changing your hashtag to #ADHDSpeaking and by doing so, making an even more powerful statement of acceptance and neurodiversity.
Here are our reasons:
Violations of the disability rights movement principle “Nothing about us without us”
Unlike other non-profit organizations (such as the Canadian Hearing Society or ARCH Disability Law Centre) which represent people with a specific disability, Autism Speaks (AS) and Autism Speaks Canada (ASC) do not allow autistic people to hold a balance of power in their governing and oversight roles. There are only two out of twenty six individuals that are autistic on their Board of Directors. We contacted ASC to inquire about autistic representation; they have (as of yet) not responded.
In his open letter of resignation from, autistic author John Elder Robison noted that “Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target” (2013). He stated “we [autistic people] do not like hearing that we are defective or diseased. We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated. We are people” (Robison, 2013). Finding that his “words and efforts have had no real impact on the beliefs of the actual leadership of the organization,” he resigned in 2013.
Misleading use of funds towards eugenicist goals
AS’ fundraising efforts are targeted towards finding a “cure” and creating a world in which autistic people no longer exist: in the US, their 2010 fiscal budget provided over $16 million in research grants to “cure” autism, while only $50,000 went toward family and community supports. (Ne’eman, 2009; Brown, 2012.)
As AS’ own 990 Non-Profit Tax Exemption Form (2016) shows, as little as 3-4% of AS’ funding is allocated to services that directly support Autistic people” According to Charity Intelligence Canada, ASC reported that it granted $1.3m in research funding, 56% of its total program costs (2017). According to ASC’s 2017 financial statements, only 4.4% of its restricted funds were spent on “family services” and 51% of ASC’s budget is consumed by overhead costs, which is outside Charity Intelligence’s “reasonable range for overhead spending” (2018).
ASC also gave $1.1m to MSSNG, the world’s largest whole genome autism study. As the International Bioethics Commission (UNESCO) reported in 2015, this raises serious ethical questions. Since prenatal testing of Downs Syndrome became available, 90% of babies with Downs Syndrome are now aborted (www.dontscreenusout.org). If the research that ASC funds is successful, we won’t even be born.
Indifference to the serious issues that affect autistic people
Despite the wealth their fundraising generates, AS and ASC’s priorities do not address the serious issues we face, both systemic: “segregated education, restraint and seclusion, aversive punishments, inequity or inaccessibility in healthcare, sheltered workshops and institutionalization” (Brown, 2012) and the attitudes and stigma which normalize abuse and violence against us, publicly and in our personal lives.
AS’ “Light it up Blue” campaign promotes an inaccurate and harmful stereotype that ‘more boys than girls’ are autistic, making it harder for autistic girls and women to identify with and be diagnosed as autistic. This outdated notion also creates barriers for the many autistic peoples who are transgender, non-binary and gender non-conforming. To counter this, autistic and neurodivergent communities initiated #RedInstead, #ToneItDownTaupe and “Autism Acceptance” campaigns during the month of April to speak out against AS’ misinformation, and affirm that we are deserving of acceptance.
Dehumanizing language and condoning of violence against autistic peoples
AS routinely uses language which describes autism as an “epidemic”, “tragedy” and a “national health crisis”. The organization’s fundraising campaigns have drawn horrified criticism from autistic people, allies and self-advocacy organizations.
AS’ “I Am Autism” campaign says (in part) “I am autism … I will make sure that your marriage fails … I will bankrupt you for my own self-gain … I have no interest in right or wrong … I derive great pleasure out of your loneliness … I will fight to take away your hope … I will make sure that every day you wake up you will cry … you [parents of autistic children] are scared and you should be” (Autism Speaks, 2009)
We do not support this portrayal of something which is integral to our lives and selves and which fuels violence and stigma against us. Autistics, particularly autistics of colour, face systemic violence, hatred, police brutality, abuse and increased rates of filicide (murder by a parent). This rhetoric has been shown to lead to violence against autistic people. An organization that supports us would not use such hostile language to describe us.
In 2013, Autism Speaks promoted the Judge Rotenberg Center (JRC) as a featured service provider at their Washington, DC “Walk Now for Autism”. The JRC has been condemned by two UN Special Rapporteurs On Torture, for being the only facility in the United States to use electric shock as punishment on disabled people. At least six students with disabled have died while at the JRC (Brown, 2013)
In 2017, ASC was found to have accepted the support of a neo-Nazi group, the “Soldiers of Odin”, a white supremacist hate group who organized an officially registered Autism Speaks Walk in southwestern Ontario. It was only after five days of social media pressure from the autistic community that ASC finally took down their page. No public response, apology or denouncement ever came from ASC regarding this, nor did they ever clarify their position on partnering with white supremacist groups.
The #AutisticsSpeaking hashtag came into use when two autistic people, Corina Becker and Kathryn Bjornstad, created Autistics Speaking Day. Many autistic people use it (like the hashtag #ActuallyAutistic) to highlight when we are speaking for ourselves, about our own experiences.
We want to ask you to celebrate acceptance over awareness this April and make an informed, collaborative choice to change CADDAC’s hashtag to #ADHDSpeaking. It’s a small change, with big possibilities that go beyond optics or simply picking sides.
Let’s use this as an opportunity to start an inter-disability dialogue in the spirit of collaborative advocacy. Autistics and ADHDers, particularly adults, both face down shame and stigma, we often find diagnoses confirming and even life-changing, we are incredibly misunderstood, even by those who love and support us, and we need far more (and diverse) support across our lifespans than we are currently receiving.
We have much to learn from each others’ local, territorial and national movements. Autistic people have been speaking, organizing and publicly daring to be proud of who we are, for decades, across borders, across communities, with almost no financial resources, and facing a charity juggernaut backed up by some of the world’s wealthiest corporations. We are building intersectional, grassroots voices that are amplifying the real experiences of a uniquely diverse group of people whose presumed ‘silence’ has been used by those who, claiming to speak for us, speak against us.
Let’s do this, cousins! Let’s start speaking, together.
Autistics for Autistics (A4A) Ontario
Autistics United Canada
London Autistics Standing Together (LAST)
If you’d like to sign onto the petition inviting CADDAC to change its campaign name to #ADHDSpeaking, click here:http://chng.it/Fj5Pvst5kv
Autism Speaks Canada. [Financial Statements 2017] Retrieved from
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Autistics 4 Autistics Ontario. (2018, June 19). Counter-Leafletting Autism Speaks Canada: Experience and Lessons from the Field. Retrieved from https://a4aontario.com/2018/06/19/counter-protesting-autism-peaks- canada-experience-and-lessons-from-the-field/
Autistic Self Advocacy Network. (March 2018). Before you donate to Autism Speaks, consider the facts. Retrieved from https://autisticadvocacy.org/wp- content/uploads/2018/03/AutismSpeaksFlyer_color_2018.pdf
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Muzikar, Debra. (2015, December 9). Stephen Shore Talks About His Appointment To The Autism Speaks Board Of Directors. Retrieved from https://the-art-of- autism.com/stephen-shore-talks-about-his-appointment-to-the-autism- speaks-board-of-directors/
Robison, John Elder. (2013, November 13). I Resign My Roles at Autism Speaks. Retrieved fromhttp://jerobison.blogspot.com/2013/11/i-resign-my-roles-at- autism-speaks.html
Schultz, Kirsten. (2017, March 9). A Roundup of Posts Against Autism Speaks. Retrieved from: https://medium.com/@KirstenSchultz/a-roundup-of-posts- against-autism-speaks-5dbf7f8cfcc6
United Nations Educational, Scientific and Cultural Organization. International Bioethics Committee. Report of the IBC on Updating Its Reflection on the Human Genome and Human Rights, SHS/YES/IBC-22/15/2 REV.2 (2 October 2015), available from the UNESCO Digital Library https://unesdoc.unesco.org/ark:/48223/pf0000233258.