Redefining the Frame

What if we have been looking at autism all wrong?

First, a note from the middle of this journey

I’ve sat with these feelings for a long time. Turning them over. Examining the edges. Trying to find the words for something I’ve felt for YEARS but didn’t always know how to name. Yeah, you read that right. I have been working on this exact share, for years. I don’t know that it is finished. Actually, it’s not. But I know it’ll never be shared if I don’t do it now.

I see my children in this. I see myself in this. I see so many of you.

And the more I learn, the more that I grow, the more that I travel, the more stories I listen to, the more people I interact with, the more I believe that our understanding of autism has been too narrow for too long.

I know of the parents who think it’s too expansive, too wide, and holds too many bodies. Their children are being overlooked and erased. Their struggles ignored. Their grievances glossed over.

And I get it. I think you’re onto something in that you want a way to acknowledge your children’s needs and unique way of being autistic that differentiates them from those who you feel have taken over the conversation.

Confession: so do I.

I just don’t believe it comes from breaking the spectrum apart. I actually feel the answer comes from expanding our definition of what it means to be autistic.

This isn’t about theory for me. It’s personal. It’s lived. It’s breathed. It’s spelled out on letter boards. It’s fought for in IEP meetings. It’s cried over in quiet moments when the world doesn’t listen.

I don’t share this lightly. In fact, there are parts of this journey I’ve kept close because of how easily things can be taken or misunderstood. I fear I haven’t found the clearest way to say this yet. I don’t know that I have articulated these points in a way that would be understood by the people who need them the most, or for those who do have the language and platform to help carry them forward.

But I also know the power of saying it out loud. Of naming what you know to be true, even when systems haven’t caught up yet. So, this is me doing that.

For myself.

For my kids.

For your kids.

For all of us who are trying to make this world a little more honest and a lot more human.

—Tiffany

Redefining Autism?

I watched a video the other day from a mother who either just revealed their child’s autism to their audience or their child was just diagnosed. She spent a good portion of the video talking about how “autism is just a social communication disorder” and went on to list all of the ways in which this definition fit her child and why some therapies that are traditionally suggested for her child, she would not be “subjecting her child to that kind of abuse.”

None of what she shared described my child.

This isn’t the first time I have seen autism defined in this way. This is the standard way of describing autism. Autism is officially classified as a neurodevelopmental disorder, meaning it’s something a person is born with and it affects how their brain develops over time. However, despite knowing autism is in the brain, from birth, the DSM focuses almost entirely on what autistic people do rather than how they experience the world.

According to the DSM, autism is diagnosed based on:

• Differences in social interaction and communication

• Repetitive behaviors, intense interests, and sensory differences

It doesn’t explain what’s going on under the surface. Or how someone’s brain might process information differently, or how things like motor planning, sensory processing, or regulation challenges affect daily life. The focus is mostly on what can be observed and measured from the outside looking in.

So while it’s called “neurodevelopmental,” our systems still treat autism like it’s just a collection of behaviors to be managed and not a way of being that needs support, understanding, and respect.

I will now make one of the boldest statements I have ever made: We do our children with high support needs* no favors when we continue to define autism solely as a social communication disorder.

That framing may capture some aspects of the diagnosis, but I honestly feel it leaves too much out. It overlooks the embodied experience of autism. It erases those whose challenges don’t fit neatly into the diagnostic criteria. And what I find to be the worst of all, it suggests that everything else; motor delays, regulation struggles, sensory differences, apraxia, dyspraxia, brain-body disconnects…are not autism at all, but rather co-occurring conditions stacked on top. It is often suggested that the struggles my child has is not at all autism but the result of co-occurring conditions.

But what if that’s not true? What if those things are autism, at least for many autistic individuals, especially nonspeaking people with high support needs?

For those like my son.

One of the most incredible things that happen for me being this remarkable boy’s mama is that I get to experience him in every way, every single day. I get to see what these professionals do not. I get know him in ways that may be unfamiliar to parents of autistic children with fewer support needs. I get to travel alongside him in ways that are foreign to those who lived experiences differ significantly from his.

And I have not used this unique perspective to its fullest potential because I have been too busy trying to remind those who talk over us that we too have a tongue.

Yes, co-occurring conditions are real. There are many autistic individuals who live with ADHD, epilepsy, intellectual disability, anxiety, gastrointestinal disorders, and more. But we rarely talk about the way these conditions often interact with autism in complex, compounding ways. They are not neatly separable. The autism itself is more complex in some individuals. The body, the brain, and the environment are in constant communication, and when we ignore that, we ignore the full reality of autistic life.

Autism is a spectrum, but that doesn’t just mean a range of traits, it also means a range of needs, of presentations, of internal realities. For some, autism may primarily impact social communication. But for others, especially those who don’t speak reliably or who experience significant motor planning difficulties, like my son, autism is a whole-body condition.

And yet, autism continues to be diagnosed based largely on what we can observe: speech, behaviors, eye contact, response to social cues. Rarely do we ask why those things are happening. Rarely do we investigate what’s happening neurologically, sensorimotor-wise, or emotionally beneath the surface.

We see a child who doesn’t speak and assume they lack language, not considering the possibility of apraxia.

We see repetitive movements and categorize them as “stims” without asking what it is that they regulating, or what they express.

We often see challenges with behavior but fail to investigate whether the body itself is struggling to process space, sensation, or proprioception. Autism is a neurodevelopmental condition, yet there is little exploration into the underlying processes and how they affect functioning on a deeper level.

For those of us raising children with high support needs, particularly those who are nonspeaking but have found alternative ways to communicate, we already know that autism affects far more than just social communication. Through my experience with my child, and in the company of so many others like them, it becomes clear that autism impacts how the brain and body work together in ways that go unnoticed by many.

When we look at autism, we often focus on behaviors like speech, eye contact, and social interactions. But what’s missing from this view is the full, embodied experience of autism. It’s not just about what you can see on the outside; it’s about how the body feels, how the brain processes sensory input, and how motor skills are developed or challenged.

For my son and many of the nonspeaking children I've come to know, their struggles with motor planning and sensory processing are just as integral to their autism as anything related to social communication and interaction. We see children who don’t speak, and the immediate assumption is that they lack language. But what’s often overlooked is that language may be there but it's just not expressed in the way that we expect.

And then there are the motor difficulties, the struggles with coordination, the difficulty with movement and balance. These challenges are often dismissed as unrelated to autism, as if they’re just "co-occurring" conditions. But in reality, these motor issues are deeply intertwined with the autism experience. They are not separate from autism, it is part of autism.

Every day, I see how my child’s struggle with trying to get his body to do what his brain is telling it to do. I see that his brain and body are communicating in ways that go beyond language. I see it in the way he experiences the world through his senses, through movement, and through the ways he interacts with his environment. These things are foundational to his experience of autism. And there are so many families, so many voices, that echo this same truth.

Autism is not just a "social communication disorder." It is a whole-body manifestation that impacts every part of the person, from how they move through the space around them to how they interpret and respond to sensory input. I wonder if we should stop defining autism by what we can see and start understanding it for the full, complex existence that it is.

Nonspeakers and those with severe dyspraxia will inform you that motor impairments are not rare, they are pervasive. They are not just comorbid, they are foundational.

But that’s not how we’re taught to see autism. And it’s certainly not how we build supports.

When we rely only on observable traits and externalized behavior, we build interventions that focus on compliance rather than comprehension. We make people perform neurotypicality without understanding how their bodies actually function. And in doing so, we fail to honor the reality of those who can’t speak on command, who can’t control their movements, who experience the world differently than the models we base everything on.

It’s time to shift our understanding. It’s time to stop defining autism solely by what it looks like, and start considering what it feels like, functions like, moves like, regulates like. Especially for nonspeaking autistic people. And those with higher support needs. For those within bodies that tell a deeper story than words ever could that autism is not just about communication. Or how we engage socially with others.

Autism is not just about behavior.

Autism is not just in the head.

Autism is a whole-body experience.

And our definitions, and our supports, need to reflect that.

This is why the way we understand autism and what we believe it is, matters. Because when we define autism solely as a disorder of social communication, we not only exclude the internal experiences of so many autistic individuals…

we actively discredit them.

Take, for example, nonspeaking autistic people who communicate through spelling-based methods like Rapid Prompting Method (RPM) or Spelling to Communicate (S2C). These Spellers often rely on a trained communication regulation partner (CRP) to help them access and sustain the motor planning needed to point to letters on a board. Sometimes, the CRP holds the board. Sometimes, they provide co-regulation through rhythmic cues, proximity, or steady verbal support. To the outside world, this looks like prompting or influence. To the Speller, it’s scaffolding. It is a way to bypass motor and sensory barriers that make independent communication nearly impossible without it.

Critics often dismiss these methods because they don’t conform to our narrow definitions of autonomous communication. “Why aren’t they holding the board themselves?” they ask. “Why can’t they spell without help?” But those questions assume the barrier is cognitive, not motoric. They assume the problem is language, and not access.

When you understand autism as a condition that can include severe apraxia, proprioceptive challenges, disrupted motor planning, and brain-body disconnects, the need for a CRP makes perfect sense. It’s not a failure. It’s a bridge.

If we understood autism through a whole-body lens, we would approach Spellers not with suspicion, but with respect. We would design supports that honor motor differences. We would expand our definitions of valid communication. We would understand that not being able to initiate or complete a movement doesn’t mean someone lacks thought, it means they need support to translate thought into action.

And we would stop punishing autistic people for the ways their bodies need to move through the world.

To Professionals and Clinicians

You are often the first line of interpretation. You are the ones who define, assess, label, and recommend. Your words shape access to services, educational pathways, and how families come to understand their child.

So I’m asking you to dig deeper. Go beyond what is observable. Learn about apraxia, dyspraxia, proprioception, motor planning, sensory integration and not just in theory, but in how these things manifest in autistic lives.

If a child can’t speak, ask why. If a student struggles to initiate movement, don’t assume they’re unmotivated, investigate the motor disconnect. If a nonspeaking individual uses a letter board with a CRP, don’t rush to discredit it, ask what supports their regulation, coordination, and access to language.

Respect the knowledge of nonspeaking communities, they have so much to say, and they worked so hard to get to this point. Respect lived experience. And update your frameworks to reflect the truth: autism doesn’t stop at behavior. It’s rooted in the nervous system. It’s whole-body. And your practice should be too.

To Therapists

You are the ones who sit with our kids day in and day out. The ones shaping their access to tools, language, and the world. Therapists can be incredible supports, but they can also become gatekeepers, especially when the methods are rooted in models that only address what can be seen. So many therapies are still built around observable behavior, around outcomes that can be charted and tracked.

But our kids are not data points. They are not their behaviors. They are whole beings, with nervous systems and brains and bodies that process the world in layered, often misunderstood ways. We need therapy that reflects that. We need approaches driven not just by what’s visible, but by what we are finally starting to learn about the brain, about regulation, about connection and processing and presence. Our children deserve support that honors who they are, not just what they do.

To Families and Caregivers

If you’re parenting or caring for someone with high support needs, you’ve probably felt the disconnect: between what you’re told autism is, and what you actually see and experience every day.

Maybe your child can’t reliably speak, but you know they understand. Maybe they struggle with movement, with transitions, with overwhelm, with doing what they want to do. Maybe you've been told, “They’re just being difficult.” Or worse, “They’re not capable.”

I want you to know there’s more going on than meets the eye. Your child’s challenges may not be about behavior, they may be about regulation, coordination, and internal experience. You are not imagining the complexity. You’re witnessing it.

You don’t have to wait for a system to catch up before you believe your child. Explore communication supports like RPM and S2C. Learn from other nonspeaking people. Read their words, watch their work, listen to what they say they needed growing up. And most of all trust that your child’s inner world is rich, even when their outer expression is limited by body-based barriers.

To Fellow Advocates and the Broader Community

We need to do better. All of us. As advocates, educators, organizers, we shape the narrative. And sometimes, we echo the very systems we’re trying to dismantle.

When we ignore nonspeaking voices, when we mock alternative communication, when we reduce autism to “awkward social behavior,” we shrink the spectrum to something more palatable for the world but more harmful for those who are most often erased.

It’s time to stop centering visibility on those who look closest to neurotypical. It’s time to stop treating high support needs as a separate category or a failure of progress. It’s time to challenge the binary of “real” vs. “fake” communication, “high” vs. “low” functioning, “autism” vs. “everything else.”

The complexity of autism is not a threat to the movement, it is the movement. Can we widen the frame? Can we make room for the full body, the full spectrum, the full truth?

Autism is not neat. It doesn’t live in a checklist. It’s not just about how someone talks or plays or looks at your face. Autism touches movement, regulation, sensory perception, expression, and access. For some, it’s subtle. For others, it’s a storm.

But it is all autism. And when we refuse to see that defining it so narrowly that entire groups are pushed out, we fail the very people we claim to support.

This is more than semantics. How we define autism shapes who gets believed, who gets support, who gets dismissed, and who disappears.

What I am trying to get at is: Autism is a whole-body experience. And it’s time the world saw it that way.

Visibility, Language, and the Fight We Need

I know there’s a lot of conversation right now, especially among parents of children with high support needs, about visibility. About being seen. About not being erased. And I get it. I really do. I thought about writing another piece that pushed back on harmful rhetoric, but I am far too tired to continue to fight in that way. Part of prioritzing my child means that I need to choose my battles wisely.

There’s a particular kind of exhaustion that comes from watching your child struggle and still feeling like their reality is invisible. I understand why some are rallying behind public figures who speak about “profound autism” with urgency. The hunger to be heard is deep. And so many of us are drowning in silence.

But I want us to be careful.

Because language matters.
And visibility without dignity, without care, without fight is not the kind of recognition our children deserve.

When someone talks about “profound autism” only to sow fear or reinforce dangerous ideas about causation or exclusion, they are not advocating for our children.

They are using them.

And often, that usage comes at the expense of other autistic people, especially those who are nonspeaking, multiply disabled, or whose support needs don’t fit the polished version of acceptance.

I don’t want to remove my child from autism just to make him more “understandable.”

I don’t want to carve out a new category just so people will finally take us seriously. I want resources. I want support. I want to live in a world that doesn’t run from disability or try to extinguish something so profoundly human. I want a world that understands the interdependent nature of our species is that we need each other, that we should care for one another.

I want to expand what autism means. I want to stretch the definition so wide it can hold all of us.
Not just the chatty ones.
Not just the “quirky” ones.
Not just the ones who make other people comfortable.

We need an understanding of autism that includes underlying neurological and motor processes. One that doesn’t split the spectrum into “real” and “not real,” “true autism” and “not true autism” but one that makes room for complexity

…all of it.

Assigning every person with autism, no matter the supports needed or impairment into one large diagnosis didn’t do what it was supposed to do. Even with the introduction of “support levels,” it still left a large portion of this community pushed to the side in the name of inclusion. The autism umbrella was meant to unify, but it didn’t fully address the complexity of the autistic experience because it didn’t concern itself with leaving space for how our internal realities shape our world. It focused on surface traits, on what others could observe, rather than honoring the deeper neurological, sensory, and motor-based differences that impact daily life in profound ways. It failed to account for the full spectrum, not just of traits, but of needs, of ways of being, of access to communication, of body-mind relationships that are hard to see from the outside. In its effort to create one definition, it still managed to erase the very people it claimed to include.

What I Hope For Our Futures

I don’t know that I can offer hope in the way people usually ask for it.
I can’t promise change is just around the corner.
I can’t pretend this isn’t heavy, because it is.
But I do have hope.

And it lives in what I want for us.

I hope for a future where my children don’t have to be exceptional to be seen as worthy. Where no one has to prove their intelligence, their humanity, or their autonomy to be treated with respect.

I hope for a future where we don’t define autism in a way that shrinks people down to what others can observe. Where the science evolves and so does the compassion.

I hope for a future where the nonspeaking aren’t left out of conversations about communication. Where support doesn’t come with shame, and “high support needs” doesn’t mean low expectations.

I hope we build an understanding of autism that holds both the struggle and the strength. The chaos and the calm. The science and the soul.

I hope we stop fracturing ourselves to be heard.
Because none of us should have to break apart to belong.

And more than anything, I hope we stop confusing visibility with care.
Because real advocacy doesn’t just say our names it stands beside us. It fights with us. It makes room.

That’s the future I want.
For my children.
For yours.
For all of us.

In closing,

I didn't want to fight about who fit where. I’ve been in that fight before. It's old. It's tired. And it gets us nowhere. I don’t want to argue about whether Robert F. Kennedy Jr. was right or wrong anymore. There are enough voices out there willing to take up that battle they don't need mine. Instead, I want to reimagine the conversation.

What if a large part of this long-standing divide lies in how autism has been defined all along? Even in "expanding" the spectrum by dropping Asperger’s and combining it into one singular "Autism" designation with levels, we still set narrow limitations. A neurodevelopmental disorder label that doesn’t truly define the neurological workings of autism, nor does it explore how these underlying developmental processes affect the lived experience of those impaired by them.

What if we expanded our understanding to include the vast possibilities within all the experiences of this diagnosis? A true understanding of autism would open the door for everyone, for every story. We’d be able to see autism as a shared journey, one where no one feels left alone to fight for visibility and care.

*high support needs: honestly I feel I may have outgrown this terminology but until I find a suitable alternative, I will continue to use it.

Note: I place “profound autism” in quotes because it’s not a formal diagnosis and not a term I use for my child. While I know some families find it helpful to describe their child’s needs, I worry it can create unnecessary divisions in our community. My goal is to advocate for understanding that embraces the full range of autistic experiences without ranking or separation.