Why are people concerned about the real-world data platform (aka the “autism registry”)? 

Even amidst the flood of information in the news, you’ve likely come across discussions about the real-world data platform – often referred to as the “autism registry.” If you’ve been avoiding the news for some peace of mind, you’re not alone. But this topic deserves attention. The National Institutes of Health (NIH) has proposed this initiative, which has sparked intense debate within the autism community. For context, a recent CDC report noted that, as of 2022, autism diagnoses reached 1 in 31 children. This rise has led to important discussions about the potential benefits of data collection, but now, also raises concerns about potential harms. 

What is the real-world data platform?  

Proposed by the NIH in April 2025, the “real-world data platform” is an initiative that  gathers and organizes large amounts of health information from various sources across the United States. These sources include electronic health records (EHRs), insurance claims, pharmacy data, clinical data, and even information from personal devices like smartwatches. 

A key point that has fueled concern is that this initiative appears to involve compiling data from these existing records without requiring individuals to explicitly opt-in or provide consent. Instead, they’re relying on existing regulations that permit the use of “de-identified” data, meaning that certain personal information, such as names and addresses, will be removed to protect privacy.  

The NIH’s rationale is that bringing together these currently fragmented datasets can lead to significant breakthroughs in autism research. By analyzing this comprehensive data, researchers hope to gain deeper insights into the causes of Autism Spectrum Disorder (ASD), identify patterns, develop more effective treatments, and improve early intervention strategies. 

However, this effort, as currently explained, is not without controversy. While the NIH has emphasized its commitment to using “de-identified data,” skepticism about privacy protections lingers. Additionally, the platform was introduced using outdated and concerning language, contributing to widespread unease. 

What are the concerns? 

Despite the stated research goals, the proposed data platform has ignited significant concerns among the autism community, advocates, researchers, and the broader public. These worries center around several key areas: 

1. Privacy and the potential misuse of data 

Although the NIH insists data will be de-identified, there are valid fears about re-identification risks, especially when large datasets are cross-referenced. Many individuals worry their sensitive medical information could fall into the wrong hands or be used in ways they did not consent to. This looming possibility could discourage families and individuals from seeking diagnoses or services, particularly if they fear being associated with a list that might stigmatize them. 

The Autistic Self Advocacy Network (ASAN) has been outspoken on this issue. Noting the potential for harm, ASAN has called for greater transparency and stringent safeguards to ensure data security. These demands reflect the community’s broader desire to prioritize the dignity and agency of individuals over research convenience. 

2. Harmful framing and stigma 

Adding a layer of complexity is the involvement of HHS Secretary Robert F. Kennedy Jr., who has faced significant public criticism for promoting scientifically debunked theories linking vaccines to autism. With his public support of discredited ideas, many fear that collected data could be manipulated to push harmful narratives. 

Language used in some initial discussions about the initiative, such as referring to autism as an “epidemic” or framing the initiative in ways that evoke fear or alarm, has also drawn sharp criticism. Such language contradicts years of progress toward promoting acceptance and understanding of autism as a natural form of neurodiversity. 

Autism advocate, Amy Gavino, captured the community sentiment well, saying, “We forget that behind every data point is a human being; behind every statistic is a family, is a life, is someone trying to exist in this world that isn’t built for people who are like us, people who are autistic, who are different.” 

These words make it clear that while data can serve as a powerful tool, it must be framed in a way that respects humanity rather than reducing individuals to statistics. 

3. The risk of exclusion 

Critics also point to a broader problem in autism research. Historically, studies have focused on a narrow subset of the autism spectrum, frequently underrepresenting women, people of color, nonbinary individuals, and other marginalized groups. If this database doesn’t make an effort to include everyone, it risks continuing these same mistakes and leaving large groups without the support or attention they need.  

4. HIPAA concerns 

And, of course, it’s no surprise that many are asking, does this violate HIPAA?  

The NIH states that the data collected for this platform will be de-identified, meaning that names, specific locations, and other personal identifiers will be stripped from the records before they are included. Under HIPAA guidelines, de-identified data can indeed be used for research purposes without obtaining individual consent. However, technology has advanced to the point that re-identification of data—even when anonymized—is a real possibility, especially when datasets are cross-referenced with other available information. This gray area leaves many asking whether these safeguards are truly enough to protect privacy. 

Additionally, parents, therapists, and advocates question transparency in how the data will be handled. If families are not given clear information about the platform or an easy way to opt-out, some argue this could erode the trust HIPAA aims to uphold between healthcare providers and patients. 

What this could mean for ABA and the autism community 

The real-world data platform represents both possibilities and pitfalls for ABA therapy professionals and the wider autism community. But it’s hard to separate opportunity from risk. 

Potential opportunities (with ethical safeguards): 

• Data-driven insights: If the data platform is developed with robust ethical oversight, transparency, and a focus on varying data privacy measures, it could potentially provide valuable insights into the diverse needs and outcomes of autistic individuals across the lifespan and in various settings. This could inform best practices in ABA and other interventions, helping to personalize support. 

• Understanding co-occurring conditions: Linking various health data sources could offer a better understanding of common co-occurring medical and mental health conditions in autistic individuals, potentially leading to improved integrated care approaches, which is highly relevant to comprehensive ABA practice. 

Significant challenges and risks: 

• Erosion of trust: The controversy surrounding the proposal and the concerns about privacy and data misuse can damage trust between autistic individuals, families, healthcare providers (including ABA therapists), and research institutions. Building and maintaining trust is essential for effective therapeutic relationships and community engagement. 

• Impact on service seeking: Concerns related to this initiative could, as mentioned, discourage families from seeking timely diagnoses or engaging in services like ABA, ultimately delaying access to crucial support. Additionally, this situation can be manipulated to suggest “progress,” as it may appear that autism diagnosis rates are declining. However, if this decline is simply due to fewer people seeking support, it is misleading and based on false pretenses. 

• Potential for misinformation: If data is misinterpreted or used to support harmful narratives, it could negatively impact public perception of autism and influence policy decisions in ways that are harmful to the autistic community. 

Recommendations for ABA therapists 

While the implications of this initiative raise significant questions, ABA therapists still play a crucial role in protecting and promoting the well-being of their clients. Here are some ways to respond:  

1. Stay informed: Keep yourself updated on the developments regarding this federal data initiative and broader data privacy discussions. Understanding the facts allows you to address client questions and concerns accurately. (See resources below). 
2. Prioritize client privacy: Reiterate your commitment to protecting client confidentiality and adhering to all privacy regulations (like HIPAA). Be transparent with clients about how their data is collected, stored, and used within your practice. 
3. Focus on person-centered care: Remain grounded in providing individualized, person-centered care that respects the unique strengths, needs, and goals of each client. Your commitment to whole-person care will be reassuring to those you serve. 

Stay updated 

• National Institutes of Health (NIH): Review their official press releases and resources about the real-world data platform on their website. 

• The Autism Science Foundation (ASF): Offers clear, research-backed insights and updates on major autism-related initiatives, including the NIH registry. 

• Autistic Self Advocacy Network (ASAN): A community-led organization that promotes the rights and dignity of autistic individuals. Stay tuned to their statements and advocacy updates. 

Takeaway 

The concerns surrounding this proposed data platform highlights a critical need to ensure that advancements in research and technology are pursued in a way that truly benefits and respects the autistic community. As a society, we can strive for a future that is not only informed by data but also guided by empathy, ethics, and the voices of those most impacted.