The last five years ushered in a wave of performative urgency across the healthcare industry — a tidal surge of press releases, C-suite appointments and purpose-driven campaigns declaring a new era of commitment to diversity, equity and inclusion. For many who have spent their careers in the trenches of health disparities work, it felt like a long-awaited reckoning — a rare window to push real, systemic change.

The Reality of Health Equity Efforts

But now, with the political winds shifting and legal uncertainties clouding the DEI landscape, many of the loudest voices have gone eerily quiet. Initiatives are quietly being sunset. Equity teams are being dissolved. Former champions have disappeared from panels and podiums. What once appeared to be a movement now feels more like a marketing cycle that expired.

Was Health Equity Just a Fad?

It’s fair to ask: was health equity just the latest healthcare “hustle”? Another badge for visibility? A convenient way to be on trend? Many of the early warning signs were there: initiatives announced without infrastructure, funding that never materialized and leadership roles created without authority or resources. DEI professionals were invited into rooms — but too often not given a voice. They were handed lofty titles, yet asked to color inside predetermined lines. Meanwhile, their organizations basked in applause for appearances, not results.

What Happened to Health Equity?

What happened? The generous interpretation is that legal and political pressures forced a change in strategy. But even that framing lets too many leaders off the hook. Because you can alter rhetoric without abandoning values. You can evolve your messaging without walking away from your mission. The truth is more uncomfortable: some organizations weren’t ever serious about this work to begin with. They were renting values, not owning them.

The Impact on Health Equity Leaders

Let’s not sugarcoat this moment. Many health equity leaders feel betrayed. They feel used. And they’re right to feel that way. Because what’s at stake isn’t just credibility — it’s people’s lives. Vulnerable communities that experience the harshest disparities in health outcomes don’t have the luxury of waiting for politics to stabilize or organizational priorities to realign. So, where do we go from here?

Moving Forward

1. Stay the Course—Even If the Spotlight Is Gone

Now is not the time to back down. In fact, real leaders will show themselves in what they do now, when the noise has died down and the easy accolades are gone. Organizations that meant what they said should continue to drive toward health equity goals however they are described — if necessary, under new language or frameworks. Call it quality. Call it population health. Call it patient-centeredness. But don’t stop doing the work just because the branding changed. Leadership is not about doing what’s popular — it’s about doing what’s right, even when it’s uncomfortable.

2. Demand Accountability—for Past Commitments and Present Silence

We cannot normalize the kind of strategic amnesia now unfolding across healthcare. When organizations made bold pronouncements in 2020, they weren’t just symbolic gestures — they were public commitments. And commitments matter. It’s time to ask the uncomfortable questions: What happened to your health equity agenda? Why are your equity leaders gone? Where did the funding go?

3. Integrate Equity into the Broader Healthcare Fix

The biggest opportunity we’ve missed is also our most urgent one: integrating the health equity conversation into broader healthcare reform. The same systemic issues — misaligned incentives, fragmented care, access barriers, clinician burnout — that fail everyone fail the most vulnerable people first and worst. Equity isn’t a separate issue. It’s the canary in the coal mine. Fixing equity and fixing healthcare are not competing goals — they are convergent ones. If we design a system that works for the most complex, marginalized patients, we design a system that is better for everyone.

Conclusion

So, yes, some of what we saw over the past few years was performative. Some of it was opportunistic. Some of it was a hustle. But it wasn’t for everyone, and we can’t afford to let our cynicism dictate the future. Because while some leaders may be done with health equity, health equity isn’t done with us. The disparities are still there. The patients are still suffering. The trust is still broken. And our obligation remains — especially if we want to call ourselves a just and compassionate healthcare system. Real leadership in this moment isn’t loud. It’s consistent. It’s not in the spotlight. It’s in the follow-through. And it doesn’t waver when the applause and recognition stops.

FAQs

• Q: What is health equity?
  • A: Health equity refers to the principle of ensuring that all individuals have an equal opportunity to achieve optimal health, regardless of their background, socioeconomic status, or demographic characteristics.
• Q: Why did health equity initiatives seem to fade away?
  • A: Health equity initiatives appeared to fade away due to a combination of factors, including shifting political winds, legal uncertainties, and a lack of genuine commitment from some organizations.
• Q: How can we move forward with health equity efforts?
  • A: Moving forward requires staying committed to health equity goals, demanding accountability from organizations, and integrating equity into broader healthcare reform efforts.
• Q: Why is integrating equity into healthcare reform important?
  • A: Integrating equity into healthcare reform is crucial because it addresses the systemic issues that disproportionately affect vulnerable communities, ultimately leading to a better healthcare system for everyone.

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.