Why Your Autism Awareness Efforts May Be Excluding Autistic People

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As leaders in organizations see embracing diversity as enriching the talent pool, they become increasingly interested in welcoming neurodivergent and, specifically, autistic talent. But well-meaning company leaders may find that their intentions don't match their impact, because the messaging of traditional "autism awareness" efforts can actually alienate autistic people and strengthen the fear they may feel about "coming out."

People outside of the autism community often receive contradictory information about which "awareness" efforts are 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 primarily dominated the awareness conversation in the mainstream and the neurodiversity perspective. Leaders need to understand the origins of these mixed and changing messages, then take steps to celebrate and include the autistic community meaningfully.

The traditional medical model views psychological characteristics associated with autism, ADHD, dyslexia and other developmental differences as deficits, or pathologies situated 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 of the norm that's beneficial on the societal level (think biodiversity), yet might be stigmatized on the individual level. Soon, the neurodiversity perspective included other developmental differences. The neurodiversity perspective is primarily aligned with the social model of disability, where disablement results largely from the mismatch between individuals' needs and their environments.

Many autistic adults take the neurodiversity perspective; they seek acceptance and inclusion rather than a cure and prefer the symbolism of diversity and completeness (the infinity sign). Some have a very intense emotional reaction to traditional autism awareness symbolism; it reminds them of feeling like "a missing piece," a "tragedy" that "destroyed" their parents' dreams. They also prefer identity-first language (autistic person) rather than person-first language (person with autism), similar to other marginalized communities that wish to reclaim their identity. On the individual level, however, it's always polite to ask each person about their language preferences.

In the past few years, some organizations aiming to represent autism in the mainstream media switched from the "autism is the enemy" rhetoric to the language of diversity. Still, the deficit perspective remains an underlying assumption that biases much of the influential discourse, and autistic adults feel largely excluded by it. When well-meaning company leaders make plans to mark Autism Awareness Day each year, for example, that sometimes takes the form of messaging based on potentially harmful stereotypes or outdated messaging, 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 in girls, who are underdiagnosed) and puzzle pieces (which to many connote incompleteness), along with walks for a cure and "autism" events that center on non-autistic speakers. While likely unintended, that cure and deficit messaging can make many autistic employees feel othered, invisible and like they can never belong.

Forward-looking organizations can do much better than having an outdated, performative Autism Awareness Day. Celebrating autism acceptance and inclusion rather than simply awareness can not only improve the well-being of your autistic employees, but it can also:

• Help shift societal views on autism toward positivity
• Amplify the strength and vibrance of autistic culture
• Support much-needed autism inclusion in the workplace, as autistic adults with college degrees remain the most underemployed group

Here are some tips for updating the symbolism of your autism acceptance efforts and for supporting autistic people in practical and impactful ways.

Use language and symbolism of autism inclusion.

While individual preferences may vary, as a group, neurodivergent adults developed shared meanings, symbolisms and traditions that differ from those suggested by organizations without autistic leadership. Your efforts might 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 help amplify the voice of the community:

• Use identity-first language preferred by most autistic adults.
• Use neurodiversity-inclusive imagery. A golden or multicolored infinity symbol are the most prominent and the least contested. Some prefer a butterfly (also used for ADHD and neurodiversity in general). Feature the colors red, tan or gold instead of blue.
• Replace "cure" language with support language. Refer to autism acceptance or, better yet, inclusion, instead of awareness, in your efforts.

Center the experience of autistic people.

For a long time, others have claimed to speak and decide for autistic people, and much of the public discourse centered on non-autistic autism professionals or family members. But the neurodiversity movement encouraged many autistic people to advocate for themselves and adopt "nothing about us without us" as a motto. Here are ways leaders and allies can help others see from the autistic perspective:

• Include your autistic employees in planning any 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.
• Offer virtual sensory sensitivities experiences that simulate sensory overload in everyday situations (e.g., by amplifying common sounds to simulate auditory sensitivity, or amplifying lights and vibrations) to help allistic (non-autistic) employees understand the role of the environment in "disabling" individuals and develop empathy toward neurodivergent colleagues. 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.
• Include parents of autistic children, grandparents, siblings and friends. Events and focus groups supportive of their experience are important; perhaps one of your permanent ERGs could also serve their needs. However, do not center their experience over the experience of autistic people. Allyship amplifies; it does not speak over.

Amplifying autistic culture and centering autistic experience is the mark of true allyship. However, the best form of allyship is full inclusion, and the best way organizations can support autistic people is by creating inclusive workplaces. Celebrating and normalizing differences without othering helps create a foundation for cultures where different people can thrive and belong.

Ludmila N. Praslova, Ph.D., SHRM-SCP, uses her extensive experience with global, cultural, demographic and ability diversity to help create inclusive and equitable workplaces. She is a Professor and Director of Graduate Programs in Industrial-Organizational Psychology at Vanguard University of Southern California.

This article is adapted from Harvard Business Review with permission. ©2022. All rights reserved.