The recent national conversation surrounding HHS Secretary Kennedy's April 16, 2025 comments about severe autism has brought to light the urgent public health and social services crisis that NCSA has long worked to address. With autism rates now affecting 1 in 31 children—a nearly 500% increase since 2000—we must acknowledge this as the epidemic it is while maintaining scientific rigor in our search for answers.
NCSA recognizes that while Secretary Kennedy's commitment to identifying autism's causes reflects appropriate urgency, we strongly encourage HHS to align its research priorities with the expert framework outlined in the Autism Science Foundation's Strategic Research Plan—a comprehensive roadmap designed to address our community's most pressing needs. As our CDC surveillance data shows, every subtype of autism has increased, including cases with intellectual disability, which now comprise approximately 40% of diagnoses. This trend cannot be explained away by greater awareness or broader diagnostic criteria alone.
When we acknowledge that some individuals require intensive, lifelong care, we aren't making a value judgment—we are recognizing an urgent need for pragmatic policy reform. Approximately 27% of those diagnosed with autism face profound challenges that require continuous, lifelong support and supervision. These individuals are often nonverbal or have limited use of language, face intellectual impairments, and may exhibit challenging behaviors that impact safety and well-being.
NCSA maintains that:
Severe autism requires special attention and services distinct from other forms of autism
We face an urgent need for innovation in treatment and support across the lifespan
Research into environmental contributors and other potential causes must be pursued through rigorous scientific channels
Policy reforms must address the complex realities of continuous care requirements
Families and caregivers need expanded access to housing, healthcare, and support services
As we confront this epidemic, our focus must remain dual-tracked: supporting essential research into causation while simultaneously developing comprehensive support systems for those most severely affected. We cannot allow unproven theories to divert resources from more plausible research directions, nor can we let debates about causation overshadow the immediate needs of individuals and families managing severe autism today.
Our support for causation research stems not only from the potential to identify exogenous risk factors but also from its potential to foster targeted treatments to improve quality of life and reduce suffering for those impacted by severe forms of autism. We categorically reject the rhetoric that such research is rooted in eugenic ideologies.
Our mission has always been to improve the long-term welfare of individuals, families, and caregivers affected by severe forms of autism. This requires honest dialogue about both current support needs and the environmental factors potentially driving increasing prevalence rates. We remain committed to giving voice to those most profoundly affected by autism, ensuring their needs are not overlooked in our national conversation about autism policy, research, and support.