Buzz
Autism Speaks (often referred to as AS or A$) is a highly contentious organization, operated by individuals not on the autism spectrum, which aims to eradicate autism. Its objectives and language have sparked protests, led by individuals with autism, and many of their supporters and allies. Here's how to conduct your research and advocate for autistic individuals worldwide.
This article contains some disturbing content, particularly in the section titled 'Doing Your Research.' Feel free to skip this section if necessary.
Steps
Conducting Your Research
It's crucial to thoroughly examine an issue before forming your stance. Here's how to conduct your research and locate relevant resources.
Take care of your mental well-being. Delving into the history of Autism Speaks can be distressing. If you struggle with conditions like anxiety, depression, PTSD, or other mental health issues, exploring AS's narrative may trigger negative emotions. Exercise caution if you're susceptible to this.
- Individuals on the autism spectrum dealing with self-esteem issues should be particularly cautious. Engaging with Autism Speaks' content could exacerbate feelings of inadequacy.
- Have a plan for self-care in case your mental health is affected. This might involve a relaxing bath, reading a good book, spending time with loved ones, engaging in artistic activities, or other comforting practices. Avoid researching right before bedtime.
Be critical of search engine results. Autism Speaks holds significant influence, potentially dominating search engine rankings and results. Seek out dissenting opinions by employing strategic search tactics.
- When searching for 'Autism Speaks,' include keywords like 'controversy,' 'negative,' 'eugenics,' or 'ASAN' (a group that has scrutinized Autism Speaks). Additionally, note that detractors of Autism Speaks often refer to it as 'Autism $peaks', replacing the S with a dollar sign.
Prioritize autistic perspectives. Autistic individuals have a personal investment in shaping their futures, addressing their needs, and influencing how they're perceived by society. Ensure your research encompasses voices across the spectrum, from those who are highly independent to those who require extensive support.
- Seek insights from autistic figures like John Elder Robison, Lydia Brown, Ari Ne'eman from ASAN, and others.
Consider viewpoints of parents and allies. Many individuals without autism are also troubled by the language and intentions of Autism Speaks. Their viewpoints offer valuable insights.
- Explore perspectives from individuals like Ariane Zurcher, Emily Willingham, Deanne Shoyer, Steve Silberman, Jess from Diary of a Mom, and others.
- Some, like Carol Greenburg, are autistic parents advocating for their autistic children.
Evaluate Autism Speaks' own statements and actions. Understanding AS's rhetoric provides insight into its stance on autism. Be mindful of your mental well-being.
- View the video 'I Am Autism,' or read its transcript. This portrayal personifies autism, depicting it as a force that destroys parents' lives.
- Examine the language used in the assertive Call to Action, a document that led to several resignations.
- Watch or learn about the documentary 'Autism Every Day,' featuring a scene where a distressed mother discusses contemplating harm towards her autistic daughter.
- Consider AS's responses to incidents of violence, often framing them as tragic yet understandable outcomes of insufficient support.
Be aware that Autism Speaks has recently undergone superficial changes, adopting the appearance and language of the neurodiversity movement. However, its actions remain largely unchanged, and it has neither apologized for nor acknowledged its past harms.
Evaluate the facts and scientific evidence. Autism Speaks has a history of disseminating misinformation, despite evidence refuting their assertions. Compare the statements made by Autism Speaks with factual data and research findings.
- Autism Speaks promoted and legitimized anti-vaccination beliefs for an extended period, despite clear evidence disproving any link between vaccines and autism.
- Autism Speaks propagated the notion that having an autistic child leads to divorce, often citing a purported 80% divorce rate among parents of autistic children. However, research indicates no significant difference in divorce rates among such families.
- A petition was launched to investigate Autism Speaks for fraud following allegations of inconsistencies in its financial reporting.
Exercise caution with trigger warnings in articles. Some articles delve into more intense and graphic subject matter than others, addressing topics such as severe ableism, child abuse, torture, murder, advocates of murder, eugenics, and other distressing themes. If you are sensitive to such content, take a moment to assess whether you are emotionally prepared to engage with it.
- Autism Speaks does not provide trigger warnings for its own disturbing content. Approach the organization's materials with caution.
- Topics such as the Judge Rotenberg Center, abuses in ABA therapy, and practices like restraint/seclusion may be particularly disturbing. Consider avoiding these topics if they are upsetting to you.
Opposing Autism Speaks
Shield your family's children and autistic individuals from Autism Speaks' media. If television or radio advertisements or programs featuring the organization are aired, switch them off. Avoid displaying blue puzzle pieces and refrain from sharing the most distressing aspects of your knowledge about Autism Speaks with them. This can help prevent them from internalizing harmful attitudes promoted by the organization.
- If they inquire, offer an explanation appropriate for their age. For example, you might say, 'That's a group that bullies people, so I don't want to watch that advertisement because it's misleading.'
- Teenagers or adults may express interest in getting involved. If they are autistic, consider whether they possess sufficient self-esteem. If you have concerns about them being exposed to overly distressing content, supervise their participation.
- Exercise heightened caution during April, when Autism Speaks is most active. This period can be challenging for autistic individuals.
Avoid supporting events affiliated with Autism Speaks. This encompasses activities like 'light it up blue,' numerous autism walks, and various 'autism awareness' initiatives. Prior to participation, conduct research on the event to ensure it aligns with ethical causes.
- As a quick indicator, the presence of puzzle pieces and the color blue often signifies ties to Autism Speaks. While not foolproof, it serves as a warning sign.
Participate in protests at Autism Speaks events if feasible. It's common for autistic individuals, parents, and allies to stage protests at AS-sponsored walks. You can create signs, use chalk, and advocate for a more inclusive understanding of autism.
- Participating in these protests requires resilience, as autistic individuals are not always treated respectfully. Some supporters of AS can be confrontational, and occasionally, confrontations escalate to food throwing. Bring a support companion if necessary.
- If attending would cause excessive stress, consider preparing posters or leaving affirming messages in chalk before the event commences.
Suggestion: Some attendees at these events may genuinely seek to support autistic individuals but may be unaware of Autism Speaks' agenda. Approach them with the assumption that they may be receptive to learning the truth about AS. They could potentially become allies and friends, so consider inviting them to join your cause.
Contemplate boycotting and reaching out to companies that endorse Autism Speaks. While AS may be resistant to change, companies operate differently, and some, such as Build A Bear, have rescinded support following community backlash.
- An online list cataloging companies supporting AS is readily accessible.
Explore the official boycott movement website. A dedicated Boycott Autism Speaks website exists, alongside various social media platforms. While formal engagement isn't obligatory, it can help you stay informed about developments if desired.
Promoting Autism Acceptance
Autistic individuals still require societal support. Here's how to collaborate with organizations that genuinely advocate for them.
Identify organizations that champion autistic individuals. Look for organizations with autistic leadership and representation at all levels. Consider these criteria for assessing the effectiveness of autism organizations:
- Authentic autistic leadership (not mere tokenism)
- Focus on support, not elimination
- Comprehensive support for individuals of all ages (not solely children)
- Clear stance on human rights; opposes abusive practices and violence
- Challenges stigma; doesn't exploit fear for profit
Advice: ASAN, the Autism Women & Nonbinary Network, the Thinking Person's Guide to Autism, and GRASP exemplify organizations widely endorsed within the Autistic community.
Educate yourself about the neurodiversity and autistic advocacy movements. Autistic advocates like Jim Sinclair have long been at the forefront of these movements. Understanding their perspectives is crucial for supporting autistic individuals.
- Neurotribes by Steve Silberman provides a comprehensive history of autism.
- The social model of disability presents an inclusive, accepting approach to disability.
Recognize Autism Acceptance Month in April. This month emphasizes social support, accommodation, and respect for autistic individuals, distinct from the fear-driven campaign of Autism Speaks.
- Show your support for autism acceptance by wearing #REDinstead.
- Amplify the voices of autistic individuals online by sharing their messages.
- Use social media platforms to promote autism acceptance and neurodiversity.
Mark Disability Day of Mourning on March 1. This day honors disabled individuals, including many autistic individuals, who have lost their lives at the hands of their caregivers. It's an opportunity to challenge the narrative that justifies murder as a response to disability.
- This day underscores the importance of acceptance, support, and inclusion.
Educate others about autism in a manner respectful to autistic individuals. Disseminate accurate and compassionate information. Instead of portraying autistic individuals as flawed, emphasize their need for additional support. Rather than viewing them as burdens, highlight their unique abilities, and emphasize the value of every individual.
- Consider sharing guides on assisting with sensory overload or understanding stimming behaviors. Articles on Mytour can be valuable resources.
- Encourage autistic individuals and their families to connect with the Autistic community for support.
- Develop a list of autism resources to distribute to those in need. Websites like the Autism Acceptance Month website, the Thinking Person's Guide to Autism, Mytour, and others can be included.
Advocate for policies that empower autistic individuals. This involves promoting self-determination, opposing harmful therapies, ensuring support across all life stages, and advocating for autistic representation in autism-related committees.
- Participate in letter-writing and email campaigns.
- Create and sign petitions advocating for these policies.
- Share articles highlighting these policies to raise awareness.
- Encourage others to engage in advocacy efforts.
Advice: Anticipate resistance from Autism Speaks. For instance, it obstructed the Schakowsky amendment of the Autism CARES act, which aimed to empower autistic adults.
Engage with autistic adults and advocacy communities. Seek their guidance on relevant events and reputable organizations.
- Explore hashtags like #AskAnAutistic (for questions answered by autistic individuals) and #ActuallyAutistic (for insights from autistic individuals).
Show support for autistic individuals in your circle. Offer patience and accommodation, emphasizing their strengths and fostering their confidence. Facilitate opportunities for them to excel and adapt.
Raise awareness about Autism Speaks. Encourage participation in more constructive initiatives. Some may involve themselves with AS without fully understanding its agenda.
- Consider responses like 'That organization is problematic' or 'It's associated with harm to autistic individuals. How about joining _______ instead?'
- Commend their willingness to contribute and suggest involvement in groups that include autistic individuals.
Effective Collaboration
Presume lack of knowledge over ill intent. Individuals may support Autism Speaks unknowingly by sharing links, donating, or participating in events.
Remain courteous and empathetic. Assume the best in others and maintain a respectful demeanor, even in challenging situations. While not obligatory, displaying good manners both online and offline is commendable.
- If you find yourself too upset, take a step back. Allow someone else with more patience or energy to handle the situation, or revisit it when you're in a better frame of mind.
- Address mean-spirited individuals firmly but politely. For instance, 'Please refrain from harassing my friend,' 'Your behavior is creating an unsafe environment and needs to stop,' or 'It's unacceptable to speak to people in such a manner. Everyone deserves respect.'
- If you're unsure how to handle a difficult person, seek guidance from a trusted individual.
Recognize when to disengage. It's challenging to maintain composure and civility when dealing with someone intent on being hostile. Manipulation, intimidation, or yelling are unacceptable behaviors. If someone is causing distress, it's okay to end the conversation.
- Learn how to block individuals on social media platforms. You have the right to block someone for any reason.
- Use phrases like 'I need a break,' 'This conversation is detrimental to my well-being, so I'm ending it,' 'I prefer not to communicate further,' or 'Your comments violate the site's guidelines, and if this behavior persists, you will be banned.'
- Remember, if someone is unwilling to change their perspective, engaging further is unlikely to be productive and will only drain your energy.
Address challenging emotions. It's common to feel upset when confronted with hurtful remarks or insensitive attitudes. Validate your feelings and acknowledge their validity.
- If you become overwhelmed, take a break. Return to the issue when you're in a calmer state.
- Reach out to a trusted confidant if you're struggling to cope with negative emotions. It's important not to suppress your feelings.
Take necessary breaks. Prioritize your mental well-being and don't hesitate to step back if you feel overwhelmed or on the verge of tears. Engage in activities that bring comfort, whether it's seeking support from loved ones, spending time with pets, or enjoying a leisurely walk outdoors. Retreat to a safe environment or supportive community, such as an autism acceptance blog.
- Ignoring your emotional needs won't benefit anyone. An activist who is excessively stressed or overworked isn't effective.
Offer support to those around you, particularly autistic individuals who may require it. Collaborate on initiatives and encourage them to prioritize their mental health. If you notice an autistic person feeling down, offer words of encouragement or a thoughtful gesture. The boycott against Autism Speaks aims to support autistic individuals. Extend kindness, acceptance, and reassurance to demonstrate your care.
- Autistic advocates may struggle to recognize when they need a break due to activism-related stress. If you observe signs of overwhelm, gently suggest taking a break to engage in self-stimulating activities or enjoyable pastimes.
- Look out for autistic individuals of all ages in your life. Even young children shielded from Autism Speaks may absorb negative perceptions about autism from their surroundings. Remind them of your love and appreciation.
