Who Speaks for Profound Autism? The Fight Over the Future of Autism Research with Tyler Hudson & Olivia Rojo

Who gets represented when the government decides the future of autism research? In this episode of INCHSTONES, Sarah Kernion is joined by advocates Tyler Hudson and Olivia Rojo for an urgent conversation about profound autism, caregiver stories, special needs parenting, and the families asking federal autism research to better reflect people with the most significant support needs.

At the center of the conversation is the Interagency Autism Coordinating Committee (IACC) and its working draft for the next federal autism strategic plan. Sarah, Tyler, and Olivia discuss why the proposal has generated such intense debate—and why families raising children with profound autism believe this moment could help bring greater attention to a population they say has too often been missing from autism research.

But this conversation goes far beyond one government document.
What should autism research be trying to understand? Should researchers investigate causes, regression, medical complexity, communication challenges, gastrointestinal problems and other co-occurring conditions? How do we improve quality of life for autistic people today while still investigating the most disabling presentations of autism?
And perhaps most importantly: who speaks for autistic people who cannot advocate for themselves?

Tyler and Olivia discuss the tension between autism self-advocacy and parent advocacy, including their concern that conversations about autism acceptance can sometimes fail to represent families living with profound disability. They argue that acknowledging severe disability does not diminish an autistic person's dignity—and that accepting an autistic person and wanting to understand the causes of their suffering are not mutually exclusive.

Olivia also shares the reality behind her advocacy: she is moving to another state seeking better care for her daughter while leaving her older daughter behind. Her family's experience opens a larger conversation about autism sibling dynamics, caregiver stress, profound care needs, and what happens when today's siblings become tomorrow's next of kin.

Tyler shares his own family's experience trying to understand his son's recurring gastrointestinal problems and the exhaustion of parents being told, once again, that they are essentially responsible for experimenting, observing, adjusting, and trying to determine what helps their child.

The three also confront a difficult reality of nonverbal autism and special needs parenting: much of the labor and suffering involved is invisible to people who have never lived it. Families may navigate dysregulation, communication barriers, medical issues, hypervigilance, sibling impact, and uncertainty about lifelong care—while simultaneously being criticized for talking publicly about those realities. This isn't a conversation asking for pity.
It's a conversation asking for visibility, research, better systems, and the willingness to remain curious about what we still don't understand about autism.

As Sarah says near the end of the episode: Severity is not the opposite of dignity.

Families can fully love and accept an autistic person while still asking why they are suffering, what medicine may be missing, and what science still needs to understand.

In This Episode
00:00 — Why Sarah, Tyler and Olivia came together for this conversation
01:55 — What families should understand about the IACC working draft
03:25 — “Autism is not a reason to stop looking”
03:50 — Profound autism and representation in autism research
06:35 — Why visibility matters for families with significant support needs
07:05 — Olivia's decision to move states seeking better care for her daughter
08:45 — Profound autism, terminology and representation
09:50 — Who advocates for autistic people who cannot self-advocate?
14:05 — What the proposed autism research framework could change
16:40 — Biomedical research and why families want researchers to keep asking questions
18:20 — What parents and allies can do now
23:00 — Reorienting autism research instead of repeating old systems
25:25 — Medical complexity and investigating what may be affecting autistic children
26:55 — Tyler's son's gastrointestinal issues and the exhaustion of figuring it out yourself
29:10 — The physical and emotional health of autism caregivers
30:50 — What happens to siblings when parents are gone?
32:25 — Autism sibling dynamics and future caregiving responsibilities
33:30 — Why families share the realities of profound autism publicly
36:55 — What allies need to understand about special needs family life
37:40 — Tyler's call to action: systems must change to produce different outcomes
39:30 — Olivia's call to action: “Nothing changes if nothing changes”
40:35 — Why severity and dignity can coexist

Resources
Read the Interagency Autism Coordinating Committee (IACC) working draft and learn more about opportunities for public participation in federal autism research and policy.

Follow Tyler Hudson and Olivia Rojo for their perspectives on profound autism, caregiver advocacy, disability, and family life.

Subscribe to the INCHSTONES Podcast for caregiver stories, honest conversations about nonverbal autism, and the realities of special needs parenting, profound autism, disability caregiving, communication, research, family life, and raising children with significant support needs.