April Newsletter: Autism Acceptance Month

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By Sarah Fowler

The Shift from “Awareness” to “Acceptance”

You may know April as Autism Awareness Month, but this year, there’s been a shift in the terminology. April is now deemed “Autism Acceptance Month.” This year’s campaign, “Celebrate Differences” is designed to build better awareness of the signs, symptoms, and realities of autism. The focus is to provide information and resources for communities to be more aware of autism, promote acceptance, and be more inclusive in everyday life [1].

Why the shift?

The Autism community has been calling on the media to move from using “awareness” to “acceptance” as a means to foster change and inclusivity of the autism community for the last 10 years. The Autism Society of America, along with other disability organizations, have finally announced a formal shift from “Autism Awareness Month” to “Autism Acceptance Month.” The idea is that in doing so, we are shifting our mindset from being aware of the presence of autism to accepting the autism community as they are. Christopher Banks, the president and CEO of the Autism Society in America, notes that although the change in verbiage seems small, words are powerful as we strive for individuals in the autism community to live full and meaningful lives.

Many autistic people have spoken out against autism awareness month, especially given its ties to the Autism Speaks organization. The Autism Speaks organization has a history of disrespecting autistic people and has kept the focus on awareness of autism rather than an actionable shift in how to treat people in the autistic community. Out of 28 total individuals on its Board of Directors, Autism Speaks only has 2 autistic board members. In addition, very little of the donations to Autism Speaks actually go towards helping autistic people and families. Fundraising strategies promote fear, stigma, and prejudice against autistic people. And lastly, Autism Speaks has not prioritized services with a practical impact for families/individuals in its budget; however, its executive pay rates are upwards of $395,000 a year [4].

The community chose the word acceptance to convey a shift in thinking/action that goes beyond just awareness that people with autism exist but instead focuses on equal rights and justice for the autistic community, treating those with autism with autonomy and respecting while adopting a “nothing about us without us” mindset that autistic people should be at the center of conversations about autism [5]. Unfortunately, Autism awareness rarely goes beyond basic education and is often full of stereotypes and misinformation about autistic people. All individuals are different thus autistic acceptance and inclusion must be treated with multifaceted solutions [5].

The autistic community needs acceptance because their voices are not being heard. Autistic people are at a higher risk of homelessness, substance abuse, unemployment, incarceration, domestic violence, and other systemic issues. The education system isn’t built for autistic children, who are still being punished for being themselves (e.g., receiving time-outs for stimming while working) [5].

Just as words/phrases can become outdated, so can symbols. Many may know the symbol that represents autism as the puzzle piece. The origin of the puzzle piece symbol goes all the way back to 1963. At the time, the board believed autistic people suffered from a “puzzling” condition and adopted the puzzle piece with an image of a weeping child as a reminder that autistic people suffer from their condition. The question at hand is how does the autistic community feel about the puzzle piece? Some autistic individuals think the puzzle piece implies that autism is a mystery that needs to be solved [6] or a disease that must be cured. Many autistic individuals find the puzzle piece as another reminder of Autism Speaks, an organization that spent years framing autism as a tragic disease. Nowadays, autistic people tend to use a rainbow infinity symbol, seen in the image above, as connected to neurodiversity [7].

Why now?

The Autistic Self Advocacy Network (ASAN) is celebrating it’s 10-year anniversary of referring to April as Autism Acceptance Month which was created by and for the autistic community. ASAN stated that “Acceptance of autism as a natural condition in the human experience is necessary for real dialogue to occur. The idea is to shift away from stigmatizing ‘autism awareness” language that presents autism as a threat.” [2] We need to address the underlying issue that advocacy organizations run by non-autistic people want to eradicate autism, whereas autistic people want to be accepted for who they are. Acceptance emphasizes that autistic people belong and deserve welcoming communities, inclusive schools and workplaces, and equal opportunities [3].

The ASAN also emphasizes that acceptance is an action that goes beyond language. In order to achieve autism acceptance, organizations must also change how they think about and represent people with autism [3].

Acceptance means:

  • Listening to autistic people. If an autistic person tells you that they need something or are unable to do something, believe them and offer any support you can. Ask autistic individuals what they need as individuals and create space for radical access in social spaces, workplaces, schools, events, and more. Brainstorm ways that your spaces could be more accessible to autistic people. It’s important to make it clear that the burden isn’t on autistic people to ask what they need, but rather forming an open line of communication [5].
  • Including autistic people in meaningful leadership positions of organizations [3]. We have to prioritize and center autistic voice, not only in April but anytime there is a conversation about the autistic community [5].
  • Advocating for things autistic people describe as harmful. For example, the practice of Applied Behavioral Analysis (ABA) is still a leading therapy for autistic children despite how many autistic advocates have talked about how cruel the practice can be. [3].
  • Standing up for the autistic community. Speak out against those who promote anti-vaccine rhetoric, attack self-advocates, or work to expand segregated settings [3].
  • Respecting the rights and humanity of all autistic people [3]. Listen to the stories of how the autistic community is discriminated against and deprived of basic human rights, then do something about it!
  • Centering needs of ALL autistic people. This means autistic people with intellectual disabilities, nonverbal autistic people, and autistic people with the highest support needs by listening and looking to them as leaders [3].
  • Recognizing the ways ableism and racism interact in the autism community. Follow the leadership of autistic people of color. Especially while police violence threatens the lives of black autistic people.
  • Aligning research and advocacy with the priorities of the autistic community [3]. Instead of donating to Autism Speaks, consider donating to organizations that help autistic people [4]:
    • Autistic Self-Advocacy Network (ASAN) provides support, community, and public policy advocacy, by and for people on the autism spectrum [4].”
      autisticadvocacy.org
    • Autism Women’s Network (AWN) seeks to share information that works to build acceptance and understanding of disability while dispelling stereotypes and misinformation which perpetuate unnecessary fears surrounding an autism diagnosis [4].
      autismwomensnetwork.org
    • Self Advocates Becoming Empowered (SABE) works to ensure that people with disabilities are treated as equals and are given the same decisions, choices, rights, responsibilities, and a chance to speak up to empower themselves as everyone else [4].” sabeusa.org

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References

  1. The Shift from Autism Awareness Month to Autism Acceptance Month
  2. Media Urges to Recognize Shift from Autism Awareness Month to Autism Acceptance Month This April
  3. Autism Self-Advocacy Network: Acceptance is an Action
  4. Autism Speaks Pitfalls Flyer
  5. Autistic People are Taking Back Autism Awareness: It’s About Autism Acceptance
  6. The Autism Puzzle Piece: A Symbol That’s Going To Stay Or Go
  7. Autism: No puzzle, nothing is wrong with us