Introduction to Autism Speaks

When Autism Speaks was founded in 2005, the autism landscape looked drastically different. Public understanding was limited. Screening options were scarce. Insurance rarely covered behavioral therapies. And families who received a diagnosis were often handed a pamphlet and sent on their way, forced to become experts overnight.

That experience was personal for Keith Wargo, the current President and CEO of Autism Speaks, whose own son was diagnosed more than two decades ago. “When he was diagnosed, we were given a diagnosis and little else. No roadmap. No coordinated support system,” Wargo explained. Like many families at the time, his support came from informal parent networks rather than institutional guidance. “Our shared journey, grounded in the experiences of our children and as parents, is what originally drew me to this work—and is what continues to keep the voices of the autism community at the center of all we do at Autism Speaks.” That hasn’t always been the case.

The Criticism of Autism Speaks And The Lessons Learned

Over the years, Autism Speaks has faced significant criticism—most notably from self-advocates—regarding its early focus on curing autism, portraying autistic individuals through a lens of fear, and failing to include autistic voices in leadership and decision-making.

But Wargo says that the feedback wasn’t ignored—it was transformative. “This is not a PR effort—it’s fundamental to how we operate and make decisions. If we’re serious about impact, we need to build solutions with, not just for, the people we’re working to support.”

This perspective has catalyzed a shift in the organization’s core mission—from one focused on early diagnosis and awareness to one that addresses support across the entire lifespan. As Wargo notes, “Autism is a lifelong condition, yet the support available to autistic adults is lacking.”

The data backs him up. According to the CDC, autistic individuals face a life expectancy of just 54 years, and only one in five people with disabilities—including autism—is employed. Autistic people are twice as likely to experience homelessness, and one in four families raising a child with autism faces food or housing insecurity.

Focusing On The Core Areas Where Autistic People Face Disparities

Autism Speaks is now focusing on three core areas where these disparities are most acute: healthcare, employment, and housing. And within each of those domains, the organization is elevating the voices of autistic individuals to help drive its agenda forward.

Dr. Andy Shih, Chief Science Officer at Autism Speaks, believes that meaningful progress for autistic adults will require long-term scientific investment. “We urgently need longitudinal studies that follow autistic people across their lifetimes,” he said, noting the absence of research on how autism intersects with chronic health conditions like cardiovascular disease, diabetes, and dementia. As the autistic population ages, Shih says, there’s a growing need to understand better how these conditions impact quality of life and life expectancy.

Despite recent advancements in early screening and evidence-based interventions, research on adulthood and aging in autism lags significantly behind. According to the 2021 National Autism Indicators Report, autistic adults frequently encounter healthcare systems that are ill-equipped to meet their needs, especially when it comes to coordinating care for co-occurring conditions. “We need to ensure that these studies are inclusive,” Dr. Shih adds, “especially of those with intellectual disabilities and individuals from underrepresented communities so that the results can drive equitable outcomes for everyone.”

True Equity And Representation of Autistic People

That emphasis on equity and representation is echoed by Eileen Lamb, Director of Social Media and Influencer Marketing at Autism Speaks—and an autistic self-advocate herself. Lamb is also the mother of two autistic children, including her eldest son, Charlie, who is nonverbal and has profound autism. “To me, true acceptance means including everybody—it doesn’t stop at level 1 autism or when it’s hard,” she said. For Lamb, meaningful inclusion means building systems that support both the gifted and the differently abled.

“Charlie has no sense of danger, which manifests in different ways like running in front of cars and eating non-edible items,” she shared. “He requires extensive support and will continue to as he gets older, but his life still has great value.” Through her dual lens as a parent and self-advocate, Lamb is helping guide Autism Speaks’ initiatives in expanding mental and physical healthcare resources, educating employers on inclusive hiring practices, and advocating for technologies that foster communication and independence.

Lamb also recognizes the importance of caregiver voices, particularly when those being served are nonverbal. “We need to invest in services and supports that allow all autistic people to be integrated into society—not just those who are able to advocate for themselves.”

Learning From The Past

Autism Speaks has not escaped its past—but its current leaders seem determined to learn from it. Its new strategic focus prioritizes autistic inclusion, not only in theory but in practice, with goals aimed at improving quality of life and extending opportunity across the spectrum. From leadership changes to investments in lifespan research and grassroots advocacy, the organization is working to rebuild trust where it once faced skepticism.

As Wargo puts it, “We can’t allow progress in early childhood to be where the story ends. Our responsibility is to make sure that every autistic person, regardless of their support needs, has the opportunity to live a full and supported life—at every age.”

That future, according to Autism Speaks, will be built not on speaking louder—but on listening better.

Conclusion

The journey of Autism Speaks reflects the broader evolution in understanding and addressing autism. From a starting point of limited understanding and scarce resources, there has been significant progress in diagnosis, awareness, and support. However, the organization’s history also highlights the importance of listening to and including the voices of autistic individuals and their families. As the focus shifts towards lifelong support and addressing disparities in healthcare, employment, and housing, the emphasis on equity, representation, and inclusion becomes paramount.

FAQs

• Q: What was the state of autism awareness and support when Autism Speaks was founded in 2005?
  A: Public understanding was limited, screening options were scarce, insurance rarely covered behavioral therapies, and families often received little guidance after a diagnosis.
• Q: What criticisms has Autism Speaks faced, and how has it responded?
  A: Autism Speaks faced criticism for its early focus on curing autism, portraying autistic individuals negatively, and lacking autistic voices in leadership. It has responded by shifting its focus towards support across the lifespan and emphasizing autistic inclusion in decision-making.
• Q: What are the core areas where Autism Speaks is now focusing its efforts?
  A: The organization is focusing on healthcare, employment, and housing, with an emphasis on elevating autistic voices to drive its agenda forward.
• Q: Why is longitudinal research important for autistic adults?
  A: Longitudinal research is crucial for understanding how autism intersects with chronic health conditions across lifetimes and for developing appropriate support systems.
• Q: What does true acceptance and inclusion mean for autistic individuals?
  A: True acceptance means including everybody, regardless of the level of autism or support needs, and building systems that support both the gifted and the differently abled.

In 2025, the landscape of Diversity, Equity, and Inclusion (DEI) is undergoing significant transformations. While some organizations are scaling back their DEI initiatives due to political and legal pressures, others are reaffirming their commitment to fostering inclusive workplaces.

Corporate Retrenchment and Rebranding

Several major corporations have reduced or rebranded their DEI efforts. For instance, Rolls-Royce has ended its formal DEI programs across global operations, replacing them with a new “employee voice network” open to all staff, reflecting a broader retreat from DEI initiatives amid political pressures . Similarly, Goldman Sachs has removed race-specific language from its diversity initiative web pages, particularly those promoting its “One Million Black Women” and “Black in Business” programs, amid increasing legal scrutiny and DEI rollbacks. 

Continued Commitment to DEI

Contrastingly, some companies are steadfast in their DEI commitments. Marriott CEO Anthony Capuano reaffirmed the company’s dedication to DEI, emphasizing that Marriott welcomes all and creates opportunities for all, values that will not change regardless of political climates. His public remarks drew widespread praise, resulting in 40,000 emails of support from Marriott employees worldwide.

Legal and Regulatory Developments

In the UK, the Business Disability Forum (BDF) faces criticism for not taking a clear stance on proposed disability pay-gap reporting reforms. The government seeks to mandate companies with 250+ employees to report pay disparities by disability and ethnicity, akin to gender pay-gap reporting. Although the BDF’s purpose is to dismantle barriers for disabled individuals, it has neither supported nor opposed the policy, citing concerns about unintended consequences.

Conclusion

The evolving DEI landscape in 2025 presents both challenges and opportunities. Organizations must navigate political, legal, and societal pressures while striving to create inclusive environments. By reaffirming commitments, adapting strategies, and engaging in transparent practices, companies can foster workplaces that value diversity and inclusion.

Remember the phrase, “If you don’t have anything nice to say, then don’t say anything at all.” This saying has been encountered by many in various life experiences. Polite, kind, pleasing, and agreeable are terms Merriam-Webster uses to define nice. Those favorable terms can go awry if over-indexed. Amira Barger, Communications Expert, DEI Executive, and Author of The Price of Nice: Why Comfort Keeps Us Stuck—And 4 Actions for Real Change, unpacks the impact of niceness and provides solutions and frameworks anyone can benefit from.

The Price of Nice: An Interview with Amira Barger

Amira Barger’s upcoming book, The Price of Nice: Why Comfort Keeps Us Stuck—And 4 Actions for Real Change, explores how the social construct of “niceness” preserves the status quo and often stifles real progress. In it, she provides a practical four-part “Think-Feel-Do-Revisit” framework for readers to shift from defaulting to “nice” to acting with “nerve”—boldness, audacity, and courage to disrupt and take necessary action.

Defining Inclusive Leadership

Inclusive leadership is defined as leadership that is clear, honest, and growth-oriented because it doesn’t avoid hard conversations or dilute necessary feedback. It prioritizes the long-term development of the people entrusted to your care over short-term harmony or comfort. It is also about growing the ability, potential, and opportunity for the entirety of the organization and the team.

Understanding the Concept of Being Entrusted to Care

Being entrusted to care means seeing, understanding, and knowing the whole person and understanding that people have lives, dreams, and desires outside of the four walls of the workplace. This includes understanding the needs of employees, such as those who need to start their workday at 9:45 instead of 9:00 am because they are caregivers to children, or an ailing parent, or a spouse.

The Impact of Niceness on Feedback Conversations

An overly “nice” approach can prevent managers from being brave and clear during feedback, thus impeding employee growth. Nice can get in the way because it keeps us from being brave. A truly inclusive and impactful leader is someone who is intent on being clear, naming the behavior and the impact, and sharing specific examples of what needs to be done differently.

Choosing Nerve over Niceness

Nerve challenges, Nerve disrupts, and Nerve holds boundaries. Even if people call you difficult, disruptive, or angry, that’s Nerve. Inclusive leaders have the opportunity to utilize the insights shared in this interview to help better navigate the workplace as a change agent.

Conclusion

In conclusion, the concept of niceness can be detrimental to inclusive leadership and effective feedback conversations. By choosing nerve over niceness, leaders can create a more inclusive workplace and foster growth and development among their employees. As a next step, reflect upon and document the scenarios and interactions where niceness played a pivotal role and essentially impacted the ability to be as inclusive as desired.

FAQs

Q: What is the definition of niceness according to Merriam-Webster?
A: Polite, kind, pleasing, and agreeable.
Q: What is the title of Amira Barger’s upcoming book?
A: The Price of Nice: Why Comfort Keeps Us Stuck—And 4 Actions for Real Change.
Q: What is the definition of inclusive leadership?
A: Leadership that is clear, honest, and growth-oriented because it doesn’t avoid hard conversations or dilute necessary feedback.
Q: What is the concept of being entrusted to care?
A: Seeing, understanding, and knowing the whole person and understanding that people have lives, dreams, and desires outside of the four walls of the workplace.
Q: What is the definition of nerve?
A: Nerve challenges, Nerve disrupts, and Nerve holds boundaries.