By: Cristina Gaudio, NCSA Legal & Policy Fellow
I am all for the empowerment of marginalized groups. I am pursuing a legal career because I wish to serve as a voice for those who do not have one. But like a good lawyer, I recognize that words must hold steady under scrutiny so that justice may bind. And recently, I have encountered an unacceptable paradox.
Disability language, which was built for empowerment, in practice often reflects the needs and values of the most verbal and independent autistic adults. For people with severe, nonverbal, or self-injurious autism, these same words can mean something radically different. Understanding this gap is the foundation of justice itself: the discipline of ensuring that words, when tested, still protect those they were written to serve.
In order to provide a much-needed course correction, I am untangling this predicament. Here are ten common terms in the disability space, explicitly defined for severe and profound autism.
1. “Nothing About Us Without Us”
This disability-rights slogan was created to ensure that people with disabilities have a voice in policy-making. However, it can only include those who are able enough to sit at the table and represent their own interests. People with severe autism by definition are unable to do this. They require 24-hour supervision and assistance just to stay alive, and under no circumstances is independent participation in public life possible without representation through someone else. If they are to represent themselves, they are paradoxically left without any representation at all.
Yet these individuals are still part of the disability community. In fact, their needs are the most urgent, extreme, and enduring, the ones for whom the system of protections was first imagined to support. Thus, for people with severe autism, all forms of inclusion will need to occur through representation by parents, caregivers, and legal guardians. Until the disability movement understands that this is inclusion, not exclusion, oppression, or silencing, they will continue making policies about them, without them, or even worse, about mild to moderate disability, without the most severe disability.
2. Least Restrictive Environment (LRE)
A key tenet of the Individuals with Disabilities in Education Act, LRE posits that students should be educated in the environment that least restricts their ability to participate in the general educational setting. This concept is again motivated by acceptance, and for many students with disabilities, it entails inclusion, at least for part of the day, in the mainstream classroom alongside neurotypical peers.
For severely autistic students, however, least restrictive does not mean mainstream. In fact, the mainstream classroom is often the most restrictive, most disempowering setting for those who simply cannot safely exist among other students, and, more importantly, for those whose learning needs do not overlap in any way with the teachings of the regular classroom. A structured, one-on-one, specialized setting, which includes therapeutic learning, occupational assistance, and biopsychosocial methodology, is often the least restrictive environment for severely autistic students. It allows for calmness, safety, and learning of basic skills (e.g., toilet-training) that will maximize the likelihood of safe existence in society.
3. Free Appropriate Public Education (FAPE)
First defined in the Education for All Handicapped Children Act (EHA), FAPE mandates the provision of a free education, appropriate to the needs of every child with disabilities. While this idea is correct in theory, it is problematic in practice, as many severely autistic students are offered an education that is appropriate in name only. Token inclusion, minimal therapy hours, and cookie-cutter placements may appear on paper to comply with FAPE, while leaving the individual completely educationally neglected.
Education for severe autism looks very different from education for less severe autism and other disabilities. It does not simply mean hearing aids, assistive technology or an iPad here and there. Instead, it may be therapeutic before it is academic. It focuses on building the most fundamental human capacities, like tolerating sensory input, communicating basic needs, managing aggression or self-injury, and learning to dress, eat, and use the bathroom independently.
“School” may consist of Applied Behavior Analysis (ABA) sessions, occupational therapy, and speech therapy integrated throughout the day, each targeting tiny steps toward self-care and communication rather than traditional academics. For students whose autism is too severe to reside safely at home, education can occur in residential or group-home programs, where trained staff provide 24-hour care and instruction focused on behavior regulation, safety, and daily living skills. These are the required building blocks of autonomy and human dignity for students who may never read or write but who can still gain quality of life through structured, specialized teaching.
4. “Neurodiversity”
“There is a fine line between valuable reminders that brain differences exist, and slogans that erase the depth and reality of severe disability.”
“Neurodiversity” erases the urgent need for care, treatment, and protection that comes with profound autism. The “just different, not disordered” framing glosses over the unimaginably difficult challenges that the severe autism community and their families face. Neurodiversity sounds correct, clean, and politically polished, but in reality is limiting and misleading to those families in dire need of resources. Many of these families would frankly prefer “neuroreality.”
5. “Acceptance, Not Awareness”
While this term was meant to move the public beyond the stigma of disability, for severe autism, “acceptance” without support means families are told to accept the suffering of daily aggression, sleeplessness, and lack of communication as if these were mere quirks rather than true emergencies. Severe families do not need blanket acceptance that turns a blind eye to reality. What they need is acceptance of truth, awareness of the depth of impairment — the constancy of care, and the magnitude of need — followed by a complete restructuring of our disability support system to provide lifelong, specialized support for severe autism. Until society can commit to providing such supports, acceptance slogans will ring hollow.
6. “Nothing to Cure”
The neurodiversity movement has often claimed that searching for autism’s causes and cures denies the validity of autistic people’s existence, and that science should instead focus on providing supports and services. But for families of profoundly autistic individuals, the provision of support is simply impossible without medical treatment. In order for severely autistic people to exist safely in society, medicalized approaches and interventions must understand where autism originates, and how its worst symptoms may be alleviated. Shutting down these research efforts silences those who are in the most need of comprehensive biomedical, behavioral, and supportive interventions.
7. “Transition Services”
Embedded within the Individualized Education Plan are procedures that help older students prepare for life after high school. For many students with disabilities, this includes transition services into work, college, or independent living programs. For severely autistic people, however, such pathways are out of reach. Meaningful adult services must consist of lifelong, caregiving-centered programs designed for 24/7 supervision, medical oversight, and behavioral support. These should not be mistaken for the institutions of past times; they are specialized, supportive residences where individuals can receive the protection and continuity they need throughout their lives. Humane, staffed homes built for safety, dignity, and continuity currently do not exist at scale, however, and until they do and are covered by Medicaid, severely autistic adults will not be able to transition into our world.
8. “High Support Needs”
This newer term is sometimes used in place of severe autism. Though well meaning, it functions as a euphemism that masks the reality of autism’s worst symptoms— the 24/7 caregiving, physical risk, and lifelong dependency that severely autistic individuals and their families face. Severe autism means more than high support needs: it means an extraordinary level of care, beyond what can be provided by the system of services that currently exists. While the term “extraordinary care” is used in Home and Community-Based Services (HCBS) waiver programs, other language, like “high support needs,” softens public perception of what extraordinary care entails, making meaningful support harder to argue for.
9. Due Process
Due process is one of the legal mechanisms for resolving special education disputes. However, the magnitude of support and supervision required by individuals means that one parent (sometimes the only parent still in the picture) is unable to work a full-time job. Due process is therefore inaccessible to overwhelmed families who lack the funds for lawyers or experts. The idea that every parent can “advocate” equally ignores the structural barriers that silence the most burdened and vulnerable: those caring for severely autistic children.
10. “Community Inclusion”
A guiding ideal of disability services policy, community inclusion is meant to ensure that people with disabilities are able to participate in society. For adults with severe autism who have aged out of school-based services, however, “community inclusion” simply means the ability to stay alive. The reality of severe autism is such that existence is not possible without 24-hour supervision, behavioral supports, medical intervention, and specialized housing. Yet funding for adult disability programs is often contingent on independent living being the end goal. Due to this disconnect around what community inclusion actually means for severe autism, programs appropriate for this population remain chronically under-funded. The slogan sounds progressive, but actually puts practical inclusion out of reach for severely autistic people.
Author’s Note:
Cristina Gaudio is the 2025–2026 Legal Policy and Advocacy Fellow at the National Council on Severe Autism. A JD/MPP candidate at Vanderbilt University and a proud autism sibling, Cristina is dedicated to advancing evidence-based policies that support individuals with severe and profound autism. Her work focuses on Medicaid reform, housing access, and meaningful services for profoundly affected individuals. She also serves as a U.S. Air Force Reserve Officer.