Forward-looking organizations can do much better than hold an outdated, performative Autism Awareness Day. People outside the autism community often receive conflicting information about what “awareness” efforts are to be welcomed, with the mainstream media, parents of autistic children, and adult autistic self-advocates presenting very different perspectives. The confusion over the language and symbolism reflects the philosophical divide between the medical perspective on autism that has largely dominated the mainstream consciousness discourse and the neurodiversity perspective. Leaders need to understand the origins of these mixed and changing messages and then take steps to meaningfully celebrate and engage the autistic community.
As leaders in organizations see embracing diversity as an enrichment of the talent pool, they are becoming increasingly interested in welcoming neurodivergent and especially autistic talent. This leads to the desire to express this interest through special events and celebrations, especially on April 2, World Autism Day. But well-meaning business leaders may find that their intentions don’t match their impact, as the message of traditional “autism awareness” can alienate autistic people and amplify the fear they may feel about “coming out.”
People outside the autism community often receive conflicting information about what “awareness” efforts are to be welcomed, with the mainstream media, parents of autistic children, and adult autistic self-advocates presenting very different perspectives. The confusion over the language and symbolism reflects the philosophical divide between the medical perspective on autism that has largely dominated the mainstream consciousness discourse and the neurodiversity perspective. Leaders need to understand the origins of these mixed and changing messages and then take steps to meaningfully celebrate and engage the autistic community.
The shortage perspective and the diversity perspective
The traditional medical model views psychological characteristics associated with autism, ADHD, dyslexia, and other developmental differences as deficiencies or pathologies that reside within individuals. An alternative view is the neurodiversity perspective. In the late 1990s, Judy Singer and Harvey Blume independently defined autism as a form of diversity—a variation on the norm that is beneficial at the societal level (think biodiversity), but can be stigmatized at the individual level. Soon, the neurodiversity perspective included other developmental differences. The perspective of neurodiversity is primarily aligned with the social model of disability, where disability largely results from the mismatch between the needs of individuals and their environment.
Autism Awareness Day began in 2007 as an initiative rooted in the medical model of autism and focused on autistic children and finding a cure. It was mainly driven by parents and medical professionals. Most parents embraced autism awareness with the best of intentions. The cure and “fight” messages that presented autism as the enemy seeking to destroy families dominated the mainstream media’s conversations about autism during that decade. These messages left many autistic youths, now adults, with mixed feelings about the dominant societal portrayal of autism — and their own place in that society.
Many autistic adults take the neurodiversity perspective; they seek acceptance and inclusion rather than healing and prefer the symbolism of diversity and completeness (the infinity sign). Some have a very intense emotional response to the traditional symbolism of autism awareness; it reminds them of the feeling of ‘a missing piece’, a ‘tragedy’ that ‘destroyed’ their parents’ dreams. They also prefer identity-first language (autistic person) over person-first language (person with autism), similar to other marginalized communities seeking to reclaim their identities. However, on an individual level, it is always polite to ask everyone about their language preferences.
In recent years, some organizations seeking to represent autism in the mainstream media have moved from the “autism is the enemy” rhetoric to the language of diversity. Yet the deficit perspective remains an underlying assumption that skews much of the influential discourse, and autistic adults feel largely left out by it. When well-meaning business leaders make plans to mark Autism Awareness Day, it sometimes takes the form of messages based on potentially harmful stereotypes or outdated messages, such as “light up the blue” (blue is associated with fundraising for the cure and also perpetuates the stereotype that autism is more common in boys than girls, who are underdiagnosed) and puzzle pieces (which for many mean incompleteness), along with healing walks and “autism” events centering on non-autistic speakers. While probably unintentional, that coverage of cures and deficits can make many autistic workers feel differently. Invisible. And as if they can never belong.
How to focus on inclusion instead of awareness?
Forward-looking organizations can do much better than hold an outdated, performative Autism Awareness Day. Celebrating autism acceptance and inclusion rather than just awareness can not only improve the well-being of your autistic employees, but it can also:
Help shift societal views on autism towards positivity. Strengthen the strength and vibrancy of the autistic culture Support much-needed integration of autism in the workplace as autistic adults with university degrees remain the group with the most unemployed
Here are some tips to update the symbolism of your attempts at autism acceptance and to support autistic people in practical and impactful ways.
Use language and symbolism of autism inclusion.
While individual preferences may differ, neurodivergent adults as a group developed shared meanings, symbolisms, and traditions that differ from those suggested by organizations without autistic leadership. Your efforts may not be perfect, but centering the autistic community and experience is a good starting point. Here are ways leaders and allies can use language and symbolism to amplify the voice of the community:
Use identity-first language, preferred by most autistic adults. Use neurodiversity-inclusive images. A gold or multicolored infinity symbol is the most prominent and the least controversial. Some prefer a butterfly (also used for ADHD and neurodiversity in general). Use the colors red, brown or gold instead of blue. Replace “cured” language with supportive language. Refer to autism acceptance or, better yet, inclusion, rather than awareness, in your April events. Consider celebrating Autism Pride Day (June 18) and Neurodiversity Celebration Week (the last full week of March).
Center the experience of autistic people.
Others have long claimed to speak and decide for autistic people, and much of the public debate has focused on non-autistic autism professionals or family members. But the neurodiversity movement encouraged many autistic people to stand up for themselves and take “nothing about us without us” as their motto. Here are ways leaders and allies can help others see from an autistic perspective:
Involve your autistic employees in planning relevant events – and let them lead. Hire an autistic designer for your campaign materials. Before you find an outside speaker, invite your employees to volunteer. Provide virtual sensory sensitivities experiences that simulate sensory overload in everyday situations (e.g., by amplifying ordinary sounds to simulate auditory sensitivity, or by amplifying lights and vibrations) to help allistic (non-autistic) employees play the role of the environment. understanding when “turning off” individuals and developing empathy for neurodivergent peers. This should be accompanied by an explanation that everyone’s autism experience is different. Feature works by autistic scholars, inventors, artists, writers and other creatives. Think of parents of autistic children, grandparents, siblings and friends. Events and focus groups that support their experience are important; perhaps one of your permanent ERGs can fit their needs as well. However, don’t center their experience over the experience of autistic people. Alliance strengthened; it doesn’t talk about.
Strengthening the autistic culture and centering the autistic experience is the hallmark of true alliance. However, the best form of alliance is full inclusion, and the best way organizations can support autistic people is by creating inclusive workplaces. Celebrating and normalizing differences without doing anything else lays the foundation for cultures where different people can thrive and belong.
This post Your “Autism Awareness Day” Might Exclude Autistic People
was original published at “https://hbr.org/2022/04/your-autism-awareness-day-might-be-excluding-autistic-people”