An Open Letter To The Sponsors Of The Autism Speaks Canada 2017 Walk

Dear Sponsors of the Autism Speaks Canada 2017 Walk,

We are writing to you as representatives of London Autistics Standing Together (LAST). We are a group of Autistic adults from London, Ontario who have come together to form a peer-support and advocacy organization. To start with, we would like to express appreciation of your interest in supporting Autistic people.

However, we are writing to you today to ask you to reconsider your sponsorship of Autism Speaks. A desire to support our community is admirable, but we would like to share with you some information of which most people are unaware, and which has led to Autism Speaks being held in low regard by many of us who are on the autism spectrum.

For example, you might be surprised to learn about how Autism Speaks allocates the funding it receives. Did you know that as of 2015, as little as 3-4% of Autism Speaks funding is allocated to services that directly support Autistic people? This is not readily apparent from their website, where the heading Family Services is conveniently tucked into the same category as Awareness & Advocacy which includes funding allocated to running advertising and “awareness” campaigns. Autism Speaks’ advertising campaigns like the “I am Autism” ad, are now infamous in the Autistic community for portraying Autistic children as dehumanized burdens on our families and communities. In fact, their “Autism Every Day” video featured a member of their board describing having fantasized about murdering her Autistic daughter as the child was playing in the background.

Much of Autism Speaks’ other funding goes to researching the genetic causes of autism. While they may have removed the language invoking a cure for autism, the research they are funding still raises concerns within the Autistic community, particularly with the research’s probable application to prenatal screening. Perhaps most damning of all is Autism Speaks’ support of the Judge Rotenberg Centre, a residential facility in Canton, Massachusetts, which is the last centre of its kind to use electric shock as a punishment on its students, a disproportionate number of whom are students of colour. These shocks have been administered even for “behaviours” as benign as tensing up in fear or standing up without permission.

The American Autism Speaks parent organization has a rating of only two stars on Charity Navigator, receiving only one star for its financial rating. The Canadian branch is not any better than its parent organization. Autism Speaks Canada’s funding priorities are likewise focused on preventing or treating autism without much thought to the needs and perspectives of those of us already living full and varied lives as Autistic people. According to Charity Intelligence Canada, $0.51 of every dollar donated to Autism Speaks Canada is consumed by overhead costs. This falls above what Charity Intelligence considers to be a reasonable range for overhead spending.

The issues of where Autism Speaks’ funding goes are symptoms of a larger problem within the corporate culture of Autism Speaks. Autism Speaks caters primarily to parents of Autistic children, and there is little inclusion or representation of the perspectives of Autistic adults. Including a token Autistic on their board is not adequate when it comes to listening to or respecting Autistic perspectives. For context, it is common practice for other disability organizations to draw the majority of their board members from the community which they represent.

The Autistic Self Advocacy Network (ASAN) was founded by Autistic people for Autistic people and the majority of their board members are Autistic. Their board includes people from a diversity of backgrounds and at least one member who is non-speaking. ARCH Disability Law Centre has a board of directors which is consumer-controlled, and more than 50% of positions on the board are filled by people with disabilities. The majority of the Canadian Hearing Society’s board of directors are culturally Deaf, oral deaf, deafened or hard of hearing. All of the members of the board of directors for the Canadian Council of the Blind are blind or living with vision loss. Why then is it acceptable for Autism Speaks to include actually Autistic people only in token roles?

Furthermore, Autism Speaks Canada’s website divides the Autistic community into “high functioning” and “low functioning” categories. These categories are vaguely defined and toxic to the Autistic community. This division of Autistic people into “high” and “low” functioning is demeaning. It ignores the specific impairments of those labeled “high functioning” and often leads to them being stigmatized as “lazy”, and/or “irresponsible” when they experience difficulty related to their disability. It stigmatizes those labeled “low functioning” by ignoring their abilities and potential. Additionally, as neither category is well defined, it is easy to move the goal posts of “high” functioning to exclude whomever’s voice happens to be inconvenient. “High functioning” people can be ignored because they don’t understand what it’s like to be “truly disabled” while “low functioning” people can be ignored with the claim that they “lack insight” and “can’t speak for themselves”.

The reality of being Autistic is that every one of us has strengths and weaknesses, and a different configuration of specific impairments. Most of us have traits that might stereotypically fall into the “high functioning” category, and traits that might stereotypically fall into the “low functioning” category. Autistic children do not stop developing as children. We grow up to be Autistic adults. We have insight into what it is to be Autistic. Excluding Autistic voices doesn’t just harm the Autistic community, it also cut parents and families off from the benefit of our perspectives and communities. Autistic adults have lifetimes of experience dealing with the challenges that parents of newly diagnosed children often find so overwhelming. We have developed strategies for managing sensory overload, and preventing or managing meltdowns. We share tips and tricks with each other about how to manage executive dysfunction, and we often find it easier to understand non-verbal communication with other Autistic people than we do neurotypical body language. We have knowledge and experience and insights that we can share.

The Autistic community does not need organizations who portray us an epidemic, or as burdens, or barely-human monsters. What we do need are organizations that advocate for our full inclusion in society. We need supports for adults once they age out of current systems. We need better protections for our rights to accommodation in the workplace. We need better sex education, and education about consent, and better support for people leaving abusive situations where they may be dependent on their abuser. We need better support and accommodation for those in our community who may need to navigate the court system. We need better support for the high numbers of those in our community who have experienced some form of trauma or abuse. We need to have our perspectives, our humanity, and our bodily autonomy respected.

The Autistic community does not need research into how to turn us into neurotypicals, or prevent our existence altogether. What we do need is research into long-term effects of compliance-based therapies; research that includes the perspectives of Autistic people who have been subjected to such therapies. We need research into how Autism presents differently in people who do not fit the stereotype of a white male child, to address the high prevalence of misdiagnosis and missed diagnosis in women, and minority communities. We need research into why some Autistics seem to have a higher sensitivity, or a higher prevalence of atypical reactions to certain medications and research into how our autistic traits impact our experiences of trauma. That research needs to be used to develop more effective ways of supporting Autistic people with common co-occurring conditions such as anxiety, PTSD, eating disorders, and depression. We need research into better ways of accommodating our sensory and communication needs.

Luckily there are better organizations out there, organizations that include Autistic people in decision making. ASAN is one, and they have Canadian Chapters. The Autism Women’s Network is another organization widely known in the Autistic community. The Ed Wiley Autism Acceptance Lending Library promotes understanding and acceptance of Autistic people from a Disability Rights perspective. On the local level there are grassroots organizations created by Autistic people for Autistic people. LAST is one of those organizations here in London, AutistiQueers is an Autistic LGBTQ support group in Toronto, and there are similar organizations beginning to emerge in other cities. An Ontario-wide grassroots organization, called Autistics4Autistics, is currently in the process of preparing to launch. Life*Spin and ATN Access are local organization which, while not catering specifically to Autistic people, have been supportive of our community. All of these are better alternatives to Autism Speaks, and centre Autistic and Disability Rights perspectives without contributing to stigma.

More information about the Autistic community’s perspectives on Autism Speaks can be found at:

https://medium.com/@KirstenSchultz/a-roundup-of-posts-against-autism-speaks-5dbf7f8cfcc6

https://thecaffeinatedautistic.wordpress.com/2013/03/05/why-i-am-against-autism-speaks-and-you-should-be-too-2/

http://www.care2.com/causes/autism-mother-sues-autism-speaks-for-disability-discrimination.html

http://autisticadvocacy.org/wp-content/uploads/2016/03/AutismSpeaksFlyer_color_2016.pdf

http://adventuresinautism.blogspot.ca/2007/06/i-take-back-every-nice-thing-i-have.html

We hope that you take into account the perspectives presented here when considering ways of supporting the Autistic community in the future.

Thank-you sincerely for your time.

Respectfully,

LAST Executive Council:

Screen Shot 2017-05-26 at 1.44.58 AM
A list of signatures. Beneath them are typed names of the Executive Council: Christina Devlin, Jacky Ellis, Anne Lessnerkraus, Zach Smith, Laura Vanos, Megan Wilson.
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