Autism Advocacy: Who Gets to Tell the Story?

Written by Bethanie Milford, LCSW

Edited by Christina Thompson

Stepping Into Public Advocacy

When I started my Facebook page “The Autism Roundtable: Diagnostic Evaluation & Therapeutic Practice” on July 21, 2026, I thought it would be an amazing bridge into the next stage of my career: public advocacy beyond advocating for my own daughter. I was somewhat daunted but hopeful, and I knew there would be pushback around some of the topics I wanted to discuss. What I did not fully appreciate was how significant the divide can be between parts of the Level 1 and Level 3 autistic communities. I am still trying to understand where Level 2 autistic people and their experiences fit within many of these conversations.

I approached this journey much like I approached starting my private practice: with a mental template of what I wanted to create, while allowing the platform to evolve as I learned, listened, and received feedback. I knew it would be a major undertaking, but I underestimated just how different it would be from building a solo private practice.

Wearing More Than One Hat

I was moving from primarily being a provider to running an independent platform where I am simultaneously the moderator and a participant. I bring several perspectives into that space: I am neurodivergent, I am the parent of an autistic adult daughter with full-support needs, and I am a clinician who primarily works with Level 1 autistic clients and caregivers of autistic loved ones. Those perspectives sometimes overlap, sometimes conflict, and often challenge me to look at autism from more than one vantage point.

Questioning the Structures We Create

I also recognize that I tend to question and challenge social structures. After all, social structures are human-made. Who decided what is right, what is wrong, whose perspective carries authority, and which experiences become the accepted narrative?

Social structures serve a purpose. They create relatively stable patterns that allow large groups of people to function together. But that does not mean they are inherently fair, intentionally designed, or beyond questioning. Many develop gradually through history, culture, institutions, and shared norms, and they can persist even when they no longer serve everyone equally or when they disadvantage particular groups.

Perhaps part of this journey for me is not simply learning how to participate within existing structures, but becoming more curious about why those structures exist, whose experiences they elevate, whose experiences they leave out, and what happens when someone begins questioning them.

The Divide I Did Not Fully Anticipate

I digress. With all of this said, one of the biggest things I am learning is just how significant the divide can be between how I and many other caregivers understand Level 3 autism and how some Level 1 autistic people understand the experiences of Level 3 autistic people.

I have had some incredibly in-depth conversations about the complexity of Level 3 autism. We are not always talking about autism in isolation. We may be talking about an autistic person who also has intellectual disability, mental health conditions, significant medical needs, and minimal or no spoken language, including some individuals who have limited or no ability to reliably communicate through AAC (Augmentative and Alternative Communication).

Who Gets to Speak for Whom?

This is where some of the disagreement becomes complicated. “Nothing about us without us” is an important principle within the autism community. At the same time, I have encountered Level 1 autistic people who believe their autistic lived experience allows them to speak to the experiences and needs of Level 3 autistic people, despite having little or no direct experience with people who require this level of support. Meanwhile, caregivers may be told that they cannot speak about the realities they witness or advocate on behalf of a loved one who cannot independently communicate those experiences.

The conversation becomes even more complicated when the caregiver is also autistic. Disclosing that identity does not necessarily resolve the disagreement. Instead, the response may shift to accusations of internalized ableism, outdated thinking, or harming the autism community by openly discussing the fear, exhaustion, disability, and sometimes dangerous situations experienced by both the Level 3 autistic person and their family.

When Awareness and Privacy Collide

Even sharing the physical consequences of severe dysregulation can become controversial. A caregiver who shares an image of an injury may be viewed as seeking sympathy or validation. The caregiver, however, may see that same image as an attempt to create awareness of what severe dysregulation can actually look like when an autistic person becomes physically aggressive toward themselves or someone they love. Of course, there are also legitimate questions about the autistic person’s dignity, privacy, and consent that deserve consideration.

It can become a constant tug of war over who is permitted to speak, whose lived experience counts, and which realities of autism are acceptable to discuss publicly. Meanwhile, some Level 3 autistic people and their caregivers remain caught in profound isolation, fear, exhaustion, and helplessness while trying to navigate systems that often do not understand their needs.

Amplifying Level 3 Does Not Diminish Levels 1 or 2

I do not believe amplifying the experiences of Level 3 autistic people requires diminishing anyone else. I can openly support the rights, dignity, autonomy, inclusion, and self-determination of Level 1, Level 2, and Level 3 autistic people while also intentionally amplifying the experiences of people with the highest support needs.

From my perspective, Level 3 autism and the realities surrounding profound support needs have increasingly fallen into the shadows within parts of the broader neurodiversity movement. Bringing those experiences back into the conversation is not about taking a voice away from anyone else. It is about making sure the autism conversation is broad enough to hold the entire spectrum.

Can Different Perspectives Coexist?

And that leaves me with the question I keep returning to:

Is it possible for us to hold genuinely different views of autism, acknowledge that autistic experiences can be profoundly different from one another, and still work together toward meaningful progress?