The Parts We Don’t Talk About

April 2nd is World Autism Awareness and Acceptance Day! And with each passing year, we are see blue lights, puzzle pieces, and social media posts about “Autism Awareness.” But most people already know Autism exists. The issue is not making people aware of Autism. What we need—what truly makes a difference—is acceptance.

In recent years, the conversation around Autism has shifted in important and necessary ways, and there is more of an emphasis on neurodiversity and accepting Autistic individuals as there are. This progress matters. It has helped challenge stigma, reduce shame, and create space for many Autistic people to be understood in ways they never were before.

The issue is that in the midst of this progress, there is an uncomfortable reality that often gets left out: Autism exists on a spectrum. And while we all know this in theory, the truth is that not all Autistic experiences look the same. And this is important to remember as we surface the conversation around acceptance, because individuals like Becca who are on the most severe end of the spectrum (ASD Level 3) are frequently minimized, misunderstood, or erased entirely from the conversation.

Level 3 Autism, as defined clinically, refers to individuals who require very substantial support in daily life. This can include being non-speaking or minimally verbal, needing assistance with basic self-care, experiencing significant sensory sensitivities, and having difficulty with changes in routine or environment. For some, communication may rely on alternative methods such as AAC devices, gestures, or facilitated systems. For others, expressing needs or discomfort may be extremely difficult, which can lead to frustration or distress.

Daily life for someone with high support needs can be complex. Tasks many people take for granted—getting dressed, using the toilet, eating, navigating public spaces—may require full assistance. Sensory experiences can be overwhelming to the point of physical pain. Sensory overload can lead to meltdowns, which can present like tantrums (but are not) and they can be intense, prolonged, and sometimes dangerous if the individual is unable to regulate safely.

Families and caregivers often play a central role, providing constant supervision and support for the duration of the individual's entire life. This can mean coordinating therapies, providing 24/7 supervision, managing medical or behavioral needs, and advocating within systems that are not always equipped to help. In many cases, it means dealing with stages of development much younger than a person's chronological age. It means navigating elopement, an inability to discern danger, self-injury, or even the desire to eat items that are not edible. For some, it means changing jobs or even leaving the workforce to be present for their Autistic loved one. It means making decisions around participating in functions and activities based on whether our Autistic loved ones can be comfortable in the environment. It can be exhausting, isolating, and emotionally complex—yet these realities are rarely lifted in broader Autism discussions.

For decades, Autism was portrayed only through a deficit-based lens—something tragic or in need of curing. The neurodiversity movement pushed back against that narrative, emphasizing strengths, identity, and acceptance. But in trying to correct one extreme, conversations can sometimes swing too far in the other direction, focusing primarily on more independent Autistic voices while unintentionally sidelining those who cannot advocate for themselves in the same ways. In trying to lift Autistic voices, we have become narrow in our definition of what counts as an "Autistic voice", so individuals who can speak and contribute to the conversation are included, but individuals like Becca who communicate using gestures, facial expressions, and AAC are not. And the perspectives of caregivers are not always given equal consideration since the caregivers oftentimes do not have Autism themselves, but their perspectives are crucial when considering the needs of an Autistic individual who is nonverbal or unable to otherwise advocate for him or herself.

Severe disability also challenges our ideas about independence, communication, and quality of life. It raises difficult questions about support and long-term needs—topics that are harder to package into simple, positive messaging. Autistic individuals who self-harm, wear diapers and helmets, can't speak, and have difficulties self-regulating do not fit the popular "Autism-is-a-superpower" narrative.

True acceptance cannot exist if it only includes the most visible, articulate, or independent individuals.

Including people with Level 3 Autism in acceptance conversations means acknowledging the full spectrum of experiences. It means recognizing that some Autistic individuals will need lifelong, around-the-clock support—and this reality does not make their lives less valuable. It means supporting caregivers without framing Autistic people themselves as burdens. It means investing in services, communication tools, education, and systems that improve quality of life for those with the highest support needs - and understanding that they are not broken and are indeed quite smart, capable of learning and growing given the right resources and accommodations.

It also means broadening how we define voice. Non-speaking individuals have perspectives, preferences, and identities, even if they are not expressed through traditional speech. Listening may require patience, creativity, and a willingness to move beyond conventional communication norms.

Most importantly, it means holding two truths at once: Autism can be a meaningful identity that deserves respect and acceptance, and Autism can also involve significant disability that requires substantial support. These truths are not in conflict. Two things can be true at the same time.

When conversations about Autism leave out those with the highest needs, they create a partial picture—one that risks invisibility for the very people who may need the most understanding and resources.

So this April, light it up blue, celebrate strengths, and help us advocate for truly inclusive spaces for people on ALL levels of the spectrum. Because if acceptance is the goal, then it must be expansive enough to include everyone.