Why and How to Boycott Autism Speaks: A Comprehensive Guide
Autism Speaks, once the most recognizable name in autism advocacy, has become a highly controversial organization. For many autistics and their allies, Autism Speaks represents a harmful and outdated perspective on autism, focusing on a cure-based model rather than acceptance and support. This article will delve into the reasons behind the widespread boycott of Autism Speaks and provide a detailed guide on how you can effectively participate in the boycott, promoting autistic voices and supporting organizations that prioritize the well-being and rights of autistic individuals.
Understanding the Controversy Surrounding Autism Speaks
To understand the boycott, it’s crucial to know the history and criticisms leveled against Autism Speaks. These criticisms often stem from the organization’s:
* **Historical Focus on a “Cure” for Autism:** For many years, Autism Speaks framed autism as a disease or a tragedy, something to be eradicated. Their advertising often used fear-based tactics, portraying autism as a burden on families and society. This “cure” narrative is deeply offensive to many autistic people who view autism as an integral part of their identity, not something to be fixed.
* **Lack of Autistic Representation in Leadership:** A major criticism has been the lack of autistic individuals in leadership positions within Autism Speaks. Decisions affecting the autistic community were, for a long time, largely made by neurotypical individuals, leading to concerns that autistic voices were not being heard or respected.
* **Funding of Questionable Research:** Autism Speaks has been criticized for funding research focused on the genetics of autism with the implied goal of prevention or early detection, which some interpret as seeking to eliminate autistic people. Other research they’ve funded has focused on finding ways to “treat” or “cure” autism, rather than on improving the quality of life for autistic individuals.
* **Use of Harmful Language and Imagery:** The organization has been accused of using language and imagery that stigmatizes autistic people, portraying them as objects of pity or fear. This can contribute to negative stereotypes and discrimination.
* **Disproportionate Allocation of Funds:** Critics argue that Autism Speaks spends a disproportionate amount of its funding on awareness campaigns and administrative costs, rather than on direct support services for autistic individuals and their families.
While Autism Speaks has made some efforts to address these criticisms in recent years, such as including autistic individuals on their board and shifting their language, the organization’s history and ongoing practices continue to raise concerns within the autistic community. Many still feel the changes are performative, designed to appease critics rather than reflecting a genuine commitment to autistic acceptance and empowerment.
Why Boycott Autism Speaks?
Boycotting Autism Speaks sends a powerful message that the autistic community’s voices and concerns matter. It demonstrates support for organizations that prioritize autistic well-being, acceptance, and inclusion. Here are several key reasons to consider boycotting Autism Speaks:
* **Supporting Autistic Self-Advocacy:** By boycotting Autism Speaks, you are supporting the autistic self-advocacy movement. This movement emphasizes the importance of autistic people having control over their own lives, advocating for their rights, and shaping the narrative around autism.
* **Promoting Acceptance and Inclusion:** A boycott sends a message that autism is not a tragedy to be cured, but a neurodevelopmental condition that should be understood, accepted, and celebrated. It encourages the development of inclusive communities that value neurodiversity.
* **Redirecting Funds to More Effective Organizations:** When you boycott Autism Speaks, you can redirect your donations and support to organizations that are run by autistic people, that prioritize autistic needs, and that focus on providing direct support services.
* **Challenging Harmful Stereotypes:** A boycott challenges the harmful stereotypes and negative representations of autism that have been perpetuated by Autism Speaks and other organizations. It promotes a more accurate and nuanced understanding of autism.
* **Holding Organizations Accountable:** Boycotting Autism Speaks holds the organization accountable for its past actions and encourages it to make meaningful changes that truly benefit the autistic community.
How to Boycott Autism Speaks: A Step-by-Step Guide
Boycotting Autism Speaks is a multifaceted effort that goes beyond simply refusing to donate. Here’s a detailed guide to help you effectively participate in the boycott:
**1. Educate Yourself:**
* **Research Autism Speaks’ History and Current Practices:** Dig deeper into the organization’s history, its mission, its programs, and its financials. Understand the specific criticisms and concerns raised by the autistic community. Websites like Autistic Self Advocacy Network (ASAN), Thinking Person’s Guide to Autism, and other autistic-led organizations offer valuable insights. Search for articles and documentaries that examine Autism Speaks’ impact.
* **Listen to Autistic Voices:** The most important step is to listen to autistic people. Read their blogs, follow them on social media, watch their videos, and listen to their experiences. Pay attention to their perspectives on Autism Speaks and their recommendations for alternative organizations to support. Amplify autistic voices in your own circles.
* **Understand the Neurodiversity Paradigm:** Familiarize yourself with the neurodiversity paradigm, which recognizes that neurological differences are a natural and valuable part of human variation. This framework challenges the idea that autism is a disorder to be cured and promotes acceptance and support for autistic individuals.
**2. Stop Donating and Fundraising:**
* **Cease all financial contributions to Autism Speaks.** This includes direct donations, participation in fundraising events like walks or runs, and purchasing merchandise from their online store. If you have recurring donations set up, cancel them immediately.
* **Inform your friends, family, and colleagues about your decision and encourage them to do the same.** Share your reasons for boycotting Autism Speaks and provide them with information about alternative organizations to support.
* **If you are involved in a company or organization that partners with Autism Speaks, advocate for ending that partnership.** Explain your concerns to decision-makers and present them with information about the criticisms against Autism Speaks.
**3. Avoid Attending or Promoting Autism Speaks Events:**
* **Refuse to attend or participate in any Autism Speaks events, such as walks, conferences, or galas.** Your presence at these events lends legitimacy to the organization and its message.
* **Do not promote Autism Speaks events on social media or through other channels.** If you see others promoting these events, respectfully share your concerns and provide information about alternative organizations.
* **Be mindful of “autism awareness” campaigns that are affiliated with Autism Speaks.** Many companies and organizations run promotions in April (Autism Awareness Month) that benefit Autism Speaks. Avoid supporting these campaigns and seek out alternatives that support autistic-led organizations.
**4. Advocate for Alternatives:**
* **Support autistic-led organizations:** Direct your donations, volunteer time, and advocacy efforts to organizations that are run by autistic people and that prioritize autistic needs and perspectives. Examples include:
* **The Autistic Self Advocacy Network (ASAN):** A grassroots disability rights organization run by and for autistic people. ASAN works to empower autistic individuals across the lifespan to take control of their own lives and the future of their community. They focus on policy advocacy, community organizing, and public education.
* **Autism Women’s & Nonbinary Network (AWN):** Dedicated to providing community, support, and resources for autistic women, girls, and nonbinary individuals. AWN promotes understanding, acceptance, and empowerment within this often-overlooked segment of the autistic population.
* **Thinking Person’s Guide to Autism:** A website and resource that provides information, perspectives, and critical analysis of issues related to autism. It is known for its commitment to autistic voices and its advocacy for evidence-based practices.
* **Communication First:** An organization that advocates for the communication rights of all people with disabilities, regardless of their ability to speak. They support augmentative and alternative communication (AAC) and other forms of communication.
* **Local Autistic-Led Groups:** Search for local autism advocacy groups in your area that are run by autistic individuals. These groups often provide direct support services, community events, and advocacy opportunities.
* **Promote neurodiversity-affirming resources:** Share articles, books, websites, and other resources that promote a positive and accurate understanding of autism and neurodiversity.
* **Encourage media representation of autistic people:** Advocate for authentic and diverse representation of autistic characters in movies, television shows, and other media. Support autistic creators and storytellers.
**5. Use Your Voice:**
* **Speak out against Autism Speaks and its harmful practices.** Share your concerns on social media, write letters to the editor, contact your elected officials, and participate in protests or demonstrations.
* **Educate others about the autism community’s concerns with Autism Speaks.** Have conversations with your friends, family, colleagues, and community members about the organization’s history and the reasons for the boycott.
* **Amplify autistic voices.** Share the stories, perspectives, and advocacy efforts of autistic individuals on your social media platforms and in your conversations. Make sure that autistic people are heard and respected.
* **Challenge misinformation and stereotypes about autism.** When you see or hear harmful or inaccurate information about autism, speak up and provide accurate information. Help to correct misconceptions and promote understanding.
**6. Be Mindful of Language:**
* **Use person-first language (e.g., “person with autism”) or identity-first language (e.g., “autistic person”) based on the individual’s preference.** Some autistic people prefer identity-first language because they view autism as an integral part of their identity.
* **Avoid using stigmatizing or pathologizing language.** For example, avoid using terms like “suffering from autism” or “afflicted with autism.” Instead, use neutral or positive language that reflects acceptance and respect.
* **Be mindful of the language used by Autism Speaks and other organizations.** Challenge the use of language that perpetuates negative stereotypes or promotes a cure-based model of autism.
**7. Support Research that Benefits Autistic People:**
* **Advocate for research that focuses on improving the quality of life for autistic individuals.** This includes research on effective interventions, supports, and accommodations that can help autistic people thrive.
* **Support research that is conducted in partnership with autistic people.** Autistic researchers should be involved in all stages of the research process, from design to data collection to analysis and dissemination.
* **Oppose research that seeks to “cure” or “prevent” autism.** This type of research is often seen as harmful and disrespectful by the autistic community.
**8. Be Patient and Persistent:**
* **Changing attitudes and practices takes time and effort.** Don’t get discouraged if you don’t see immediate results. Keep educating yourself, advocating for autistic rights, and supporting organizations that prioritize autistic well-being.
* **Stay informed about the latest developments in the autism community.** Follow autistic-led organizations and advocates on social media, read their blogs, and attend their events. This will help you stay up-to-date on the issues that matter most to the autistic community.
* **Be an ally to the autistic community.** Listen to autistic voices, respect their perspectives, and stand up for their rights. Work to create a more inclusive and accepting world for autistic people.
Organizations to Support Instead of Autism Speaks
When redirecting your support, consider donating or volunteering at the following organizations:
* **The Autistic Self Advocacy Network (ASAN):** A leading self-advocacy organization run by and for autistic people.
* **Autism Women’s & Nonbinary Network (AWN):** Provides support and resources for autistic women, girls, and nonbinary individuals.
* **Thinking Person’s Guide to Autism:** Offers information and resources that prioritize autistic perspectives.
* **Communication First:** Champions the communication rights of all individuals with disabilities.
* **Local Autistic-Led Groups:** Support local advocacy and support groups in your area.
Consider also supporting disability rights organizations that work on broader issues affecting autistic individuals, such as access to education, employment, and healthcare.
Addressing Common Arguments in Favor of Autism Speaks
You may encounter people who defend Autism Speaks. Here’s how to respond to some common arguments:
* **”But they raise so much awareness!”** Awareness is important, but awareness campaigns that stigmatize autistic people or promote a cure-based model are harmful. Focus on supporting organizations that promote acceptance and understanding.
* **”They provide resources for families!”** While Autism Speaks offers some resources, many families find them to be unhelpful or even harmful. Support organizations that provide direct, practical support services that are tailored to the needs of autistic individuals and their families.
* **”They’ve changed their mission!”** While Autism Speaks has made some changes, their history and ongoing practices continue to raise concerns. It’s important to hold them accountable and to support organizations that have a proven track record of supporting autistic people.
The Importance of Ongoing Engagement
Boycotting Autism Speaks is not a one-time action. It’s an ongoing commitment to supporting the autistic community and advocating for their rights. By educating yourself, amplifying autistic voices, and supporting alternative organizations, you can help create a more inclusive and accepting world for autistic people.
By actively participating in this boycott, you’re not just withholding support from an organization; you’re actively investing in a future where autistic voices are heard, respected, and valued. You’re contributing to a world where neurodiversity is celebrated and where autistic individuals can thrive.