Podcast Summary: Divergent Conversations

Episode 129 (Season 4) — Breaking Down Language and Labels in Autism Advocacy

Hosts: Dr. Megan Anna Neff (A) & Patrick Casale (B)
Date: October 24, 2025

Episode Overview

This episode addresses the complex and often contentious topic of "functioning labels" in autistic advocacy—terms like "high-functioning" and "low-functioning" autism. Dr. Megan Anna Neff and Patrick Casale, both AuDHD (Autistic-ADHD) therapists, candidly explore the harm these labels can cause, their roots in ableism and capitalism, the importance of nuance, support needs language, and the evolving nature of self-advocacy. Throughout the discussion, they infuse personal stories, acknowledge their own learning arcs, and highlight the ongoing evolution in the neurodivergent space.

Key Discussion Points & Insights

1. The "Autistic Starter Pack" & Early Advocacy Language

• Nuances of Self-Discovery:

  • Patrick notes the common pattern where late-identified autistic individuals initially embrace certain “do’s and don’ts” as they enter advocacy spaces.
  • Megan references Tiff Hammond’s concept of the "autistic starter pack"—a checklist mentality about being a “good” autistic advocate, which includes rejecting functioning labels and using identity-first language ([03:00]).

• Quote:

  • “To be a good autistic advocate. To be a good autistic person in this space. Here are the things I say, here are the things I believe, here are the things that I adhere to.” —Patrick ([03:45])

• Learning & Unlearning:

  • Both acknowledge past mistakes and the process of holding themselves accountable as their understanding grows.
  • Megan reflects that early posts often mirrored starter-pack advice (“Don’t use the puzzle pieces and don't use functioning labels”), emphasizing that this is a common, not negative, phase ([04:25]).

2. Shame, Learning Arc & Community Tensions

• The Fear of Missteps:

  • Megan describes feeling shame in early Facebook groups for using medical language like “ASD,” highlighting anxiety about community norms and the importance of compassion for different stages of learning ([06:15]).

• Quote:

  • “We have to be able to have compassion for wherever we are in the learning arc, and compassion for one another of where other people are at.” —Megan ([07:13])

3. Why Functioning Labels Are Problematic

• Social Awkwardness & Social Value:

  • The hosts underscore that asking someone “How functional are you?” would never happen with allistic (non-autistic) people—functioning labels are uniquely imposed upon autistics, often as a shorthand for perceived societal value ([08:23]).

• Ties to Capitalism & Worth:

  • Patrick links functioning labels to capitalism, noting that “productivity” is wrongfully used as a measure of worth.
  • Megan elaborates: "Human worth is so much bigger than how our society tends to look at it. And I think you just see it crystallized so clearly in this functioning label." ([15:24])

• Stigmatization & Lost Nuance:

  • Labeling someone “high-functioning” or “low-functioning” flattens the complexity of support needs and ignores personal and contextual variation.
  • These labels foster hierarchy, minimize support needs for “high functioning” folks, and diminish the inner lives of “low functioning” folks, especially non-speaking autistics ([13:08], [14:30]).

• Notable Quote:

  • “Our functioning ebbs and flows so much... And on the flip side, those deemed low functioning are often minimized... Their functioning is often minimized.” —Megan ([13:08])

4. Evolution of Language: Support Needs and DSM Levels

• Toward Nuanced Language:

  • The community now considers “support needs” (low, medium, high) and DSM-5 levels (1, 2, 3) as more descriptive and affirming, although not perfect.
  • The transition away from Asperger’s and the merging of the spectrum has caused tension, particularly for families of high-support-needs autistics ([18:34]).

• Limits of Self-Determination:

  • While self-determination is valued, Megan flags that “words need to mean something” to retain effective communication and ensure services are appropriately targeted ([20:59]).

• Quote:

  • “If autism becomes this buzzword or everyone’s autistic, it’s going to lose the meaning and then like access to services that we desperately need... what's going to happen there?” —Megan ([21:51])

5. The Risks of Diluting “Autism” and Impacts on Services

• Mental Health Needs & Invisible Disability:

  • Lower-support-needs autistics often face pronounced mental health challenges due to masking and invalidation, risking the loss of legitimacy if language and definitions become too broad ([23:29]).

• Internalized Ableism:

  • Both discuss personally (and collectively) pushing past their own limits due to societal dismissal of “invisible” needs, noting how functioning labels exacerbate the struggle for recognition and accommodation ([25:37]).

6. Intersectional Tensions within the Community

• The “Breadcrumb” Effect:

  • Megan references Sojourner Truth in explaining intracommunity tension—when resources are scarce, marginalized people may argue with each other rather than address systemic barriers ([27:39]).
  • Affirmation that all types of autistic needs and lived experiences matter.

• Quote:

  • "We all deserve to be here. We all deserve to have our experiences matter." —Megan ([28:24])

7. Evolving Attitudes Toward Parents & Caregivers

• Megan shares a personal shift, moving from an “us vs. them” stance with parents/caregivers of high support needs autistics to a more inclusive, listening approach. She acknowledges that there is value in learning from caregiver perspectives—and that some starter-pack attitudes may oversimplify complex histories ([30:35]).

8. Synthesis & Affirming Language

• Summary Conclusion:

  • Both hosts agree that functioning labels are unhelpful and affirming language around support needs and the diversity of autistic experience is critical.
  • A call for language that honors both the shared and unique needs across the spectrum.

• Quote:

  • “Functioning labels not helpful. I think there's much more affirming language out there that's accessible. And when we critique functioning labels, remembering that the spectrum is not all the same and it's important to retain language that helps to honor the different experiences.” —Megan ([33:05])

Notable Quotes & Moments (with Timestamps)

• “To be a good autistic advocate… here are the things I adhere to.” —Patrick ([03:45])
• “We have to be able to have compassion for wherever we are in the learning arc...” —Megan ([07:13])
• “How weird would it be… if I was just like, 'Hey, how functional are you?' That's just a weird ass question.” —Megan ([09:02])
• “When we start to examine it through a capitalistic lens, right, we are basically… placing inherent value on productivity. How much productivity do you offer society? And that feels really shitty.” —Patrick ([09:54])
• “You see it crystallized so clearly in this functioning label… you see all these values our culture has placed on them.” —Megan ([15:24])
• “If autism becomes this buzzword… it’s going to lose the meaning and then like access to services that we desperately need.” —Megan ([21:51])
• “We all deserve to be here. We all deserve to, like, have our experiences matter.” —Megan ([28:24])
• “Functioning labels not helpful... it’s important to retain language that helps to honor the different experiences.” —Megan ([33:05])

Timestamps for Key Segments

• Autistic Starter Pack — [02:32]–[06:15]
• Experiences of shame & learning in advocacy spaces — [06:15]–[08:23]
• Problematic nature of functioning labels, ties to capitalism — [09:02]–[15:59]
• Shift to support needs language & DSM levels — [18:34]–[21:51]
• Dilution risks & mental health impact — [23:29]–[26:07]
• Internal community tensions (“breadcrumb” effect) — [27:39]–[28:48]
• Listening to caregivers & inclusive advocacy — [30:35]–[32:10]
• Synthesis & conclusion — [33:05]–[33:34]

Tone & Style

The episode is conversational, honest, and self-reflective, with both hosts modeling vulnerability and openness about their own growth and changing perspectives. The tone is supportive, sometimes playful, but also willing to challenge mainstream advocacy norms and acknowledge discomfort, privilege, and ongoing uncertainty.

For Further Reflection

• The hosts call listeners to embrace evolving language, allow room for mistakes and shifts in understanding, and center compassion for people’s positions on the “learning arc.”
• They underline the need for both specificity and inclusivity in how we talk about autism, ensuring all voices—particularly those of higher support needs and caregivers—are respected and included.

This well-rounded exploration provides valuable context and insight for anyone interested in the lived realities and ongoing debates within autistic advocacy—particularly around the pitfalls of functioning labels and the importance of nuanced, affirming language.