The Push for a Profound Autism Diagnosis: Understanding the Debate Over Care and Support
Why a New Category is Being Proposed
The landscape of autism diagnosis has undergone significant transformation over recent decades, and with these changes has come an important conversation about how we categorize and support individuals across the autism spectrum. At the heart of this discussion is a growing movement to establish a distinct diagnosis called “profound autism” for individuals who require constant, lifelong care and support. Advocates argue this isn’t about creating divisions within the autism community, but rather about ensuring that those with the most intensive needs receive appropriate services, treatments, and trained providers who can meet their unique challenges.
Judith Ursitti, who serves as president of the Profound Autism Alliance and is the mother of an adult son with what would be classified as profound autism, has become a leading voice in this effort. She points to a troubling gap in the current system: people who need round-the-clock care are not receiving adequate support, and worse, they’re largely excluded from clinical research that could lead to better treatments and interventions. Without dedicated research focusing on this population, Ursitti warns, there’s little hope for developing the specialized services and supports these individuals desperately need. The key distinction, she emphasizes, is that while many people across the autism spectrum may have high support needs that come and go, those with profound autism require constant, unwavering assistance throughout their entire lives.
How We Got Here: The Broadening of Autism Diagnosis
To understand why advocates are calling for a separate profound autism category, it’s important to look at how autism diagnosis has evolved. For decades, autism rates have been steadily climbing, but this increase doesn’t necessarily mean more people are becoming autistic. Instead, two major factors have contributed to the rising numbers in ways that have inadvertently shifted focus away from those with the most intensive needs. First, the definition of autism spectrum disorder has expanded considerably, now encompassing many individuals with relatively low support needs who might not have been diagnosed in previous generations. Second, increased awareness and better screening tools have led to many more children being identified as autistic, with the majority of these newer diagnoses representing milder presentations of autism.
This broadening has created an unusual situation where the very progress we’ve made in recognizing and diagnosing autism has, paradoxically, made it harder to address the needs of those who require the most help. Today, an estimated 1 in 31 children in the United States has autism spectrum disorder—a number that would have been unthinkable just a few decades ago. Among this large and diverse group, researchers estimate that approximately a quarter fall into what experts are calling “profound autism.” This term, formally introduced in 2021 by the Lancet Commission—a group of leading autism researchers and clinicians—describes individuals who need constant lifelong care, have significant intellectual disabilities, and are either nonverbal or have very limited verbal abilities.
Understanding the Changes in Diagnosis
The story of how we arrived at this point involves a significant shift in how the medical community classifies autism. In the past, people who would today be considered for a profound autism diagnosis might have been classified under “autistic disorder,” which was one of five distinct subtypes within a larger diagnostic category called pervasive developmental disorders. Other subtypes included Asperger’s syndrome, which described individuals with autism-like traits but without language delays or intellectual disability. However, in 2013, the American Psychiatric Association made a sweeping change to how autism is diagnosed. They eliminated the old system of subtypes and created a single, unified diagnosis: autism spectrum disorder. The intention was to recognize that autism exists on a continuum, with tremendous variation in how it presents and affects individuals.
While this change had many benefits, including reducing confusion about different labels and acknowledging the spectrum nature of autism, it also created new challenges. By grouping everyone under one broad umbrella, it became harder to ensure that those with the most significant needs received appropriate attention, resources, and specialized care. This is where the proposal for a profound autism diagnosis enters the picture—not as a return to the old system, but as a recognition that within the spectrum, there exists a subset of individuals whose needs are so constant and intensive that they require a distinct approach to research, treatment, and support services.
Concerns Within the Autism Community
Not everyone in the autism community supports the creation of a profound autism diagnosis, and these concerns deserve serious consideration. Some worry that establishing a separate category would inadvertently reduce attention and resources for the broader autism spectrum, potentially leaving many individuals without the support they need. There’s also concern about the individual needs of each autistic person being overlooked when we create rigid diagnostic categories. Dena Gassner, who is both an autistic person herself and a senior research scientist at Drexel University, as well as the mother of an autistic adult with moderate support needs, has expressed ambivalence about the proposed label. She worries about the potential for stigmatization that could come with being designated as having “profound” autism.
Gassner makes an important point that resonates throughout the disability rights movement: the problem isn’t autism itself or the people who are autistic—the problem is the “massive lack of supports and services” in our society. From this perspective, creating new diagnostic categories might be treating the symptom rather than the disease. Instead of dividing the autism community into subcategories, she and others argue, advocates should come together with a “unified voice” to demand better services for everyone across the entire spectrum. This view emphasizes that all autistic people deserve appropriate support, regardless of where they fall on the spectrum, and that fracturing the community might actually weaken advocacy efforts rather than strengthening them.
Finding Common Ground in the Debate
Despite these differing perspectives, there appears to be significant common ground among stakeholders in the autism community. Andy Shih, who serves as chief science officer for Autism Speaks, one of the largest autism advocacy organizations, acknowledges the debate but emphasizes a point of universal agreement: regardless of where people stand on the question of creating a profound autism diagnosis, there’s “absolutely no doubt that we need to elevate awareness about the needs of this group.” This statement captures the essence of what many see as the real issue—not whether we create a new label, but whether we adequately recognize and respond to the intensive, lifelong needs of individuals who require constant support.
The path forward likely requires balancing these perspectives carefully. On one hand, there’s a legitimate need to ensure that research, treatment development, and service provision adequately address the needs of individuals with the most intensive support requirements. These individuals and their families face unique challenges that may not be fully captured in research that includes a broad spectrum of autism presentations. On the other hand, the autism community has worked hard to build understanding and acceptance, and there’s valid concern about any approach that might stigmatize certain individuals or fragment advocacy efforts. Perhaps the solution lies not in creating divisions, but in developing more nuanced ways to describe and respond to support needs across the spectrum while maintaining solidarity within the autism community. What’s clear is that this conversation reflects a broader challenge in healthcare and disability services: how do we recognize and respond to diversity within diagnostic categories while ensuring that everyone receives the individualized support they need to live full, meaningful lives?
