Podcast Summary

The Neurodivergent Experience

Episode Title: Hot Topic: The Problem Isn’t “Profound Autism” — It’s the Label Itself
Hosts: Jordan James and Simon Scott
Date: October 16, 2025

Episode Overview

In this episode, Jordan and Simon delve into the controversial discussion around the labeling of “profound autism” and “severe autism.” Prompted by a recent New York Times article and ongoing debates in both advocacy and scientific circles, they question the impact of these labels—not only on individuals within the autistic community but also on public understanding and support. Throughout, the hosts reflect on personal experiences, the diversity of the autism spectrum, and the implications of categorizing severely impaired individuals separately from the rest of the spectrum.

Key Discussion Points & Insights

1. Setting the Stage: Why This Debate Matters

• The conversation was sparked by a New York Times article asking if the autism spectrum should be "split apart" and whether families of those with "severe autism" are being sidelined as the definition of autism broadens.
• Simon and Jordan emphasize the risk of viewing autism solely through pathology and deficit, noting how inaccurate and stigmatizing the “severe” label can be.

“If you think that autism is this terrible, awful, evil thing that damages a human, that it's only bad, only a catastrophe, then you will use the word severe autism because it's severely bad.”
— Jordan (03:30)

2. Personal Reflections on Labels and the Spectrum

• Both hosts discuss how autism diagnoses have evolved. Jordan recalls being diagnosed as having Asperger's, while Simon highlights his own self-diagnosis and the catalyst it created for others in his life.
• They critique the binary of “high” vs. “low” functioning, describing how these terms fail to capture lived realities and suggest that helping everyone—no matter where they are on the spectrum—should be the priority.

"I want to help these people, even if they are a minority... Even if it was 2% of the autistic population, that is 2% of people that we will not, I will not forget about."
— Jordan (10:14)

3. Problems with “Severe” and “Profound Autism” Labels

• The hosts dissect the CDC’s statistic that 26.7% of autistic people have “severe impairments,” and question the reliability and ramifications of this figure, especially when so many adults go undiagnosed.
• They raise the issue of “profound autism” as a new proposed category, and express concern over its potential to further stigmatize—reminding listeners that language and labels matter deeply.

"I'm not actually against...having a different category for these autistic people, but...words matter. Words really matter...From the early stages of this podcast, we were saying, words matter."
— Jordan (15:04)

4. The Unpredictability of Growth and Development

• Both hosts share personal stories of behaviors from childhood—meltdowns, self-injurious habits—that echo those associated with “profound autism,” and reflect on the non-linear ways autistic people develop.
• Citing Temple Grandin and Steve Silberman’s book "NeuroTribes," they note how many individuals once considered “low functioning” or severely impaired went on to live independent, successful adult lives.
• They stress that early, rigid labels may cap expectations and discourage growth.

"If somebody had told me, this kid's not going to get a job, he's not going to have a relationship, he's never going to play sports, he's never going to do this, why would I even try any of those things if I'm told I can't do them?"
— Simon (22:08)

5. Support vs. Segregation

• Jordan and Simon argue that splitting off a group by label, especially at a very early age, risks both neglect and harmful limitation.
• They advocate for reserving any “severe” or alternative diagnostic criteria until adulthood, once the brain completes its major developmental phases, so potential isn’t stifled prematurely.

"If they want a different categorization for autistic people like Jody, don't give it to them at 3, give it to them at 25...that way you've not capped anyone's potential, but you bring more awareness to people like Jody."
— Jordan (25:01)

6. The Real Issue: Lack of Support

• Ultimately, the hosts return to the core problem: the conversation should focus less on labeling and more on ensuring access to services, support, recognition, and respect for neurodivergent individuals across the spectrum.

"Because the worst thing about all of this is it takes the focus on what is more important, and that is getting services, facilities, understanding, awareness, support. That's what's important."
— Jordan (27:13)

Notable Quotes & Memorable Moments

• “Severely autistic means super hyper-focused because that's what being autistic means to me.”
  — Jordan (07:58)
• “When Sylvia goes away, oh my God...this place is not great. Like, I am just really PDA with just ADHD and just being autistic in general...just being a big kid.”
  — Jordan on interdependence and support needs (18:37)
• “Imagine we had done that with Stephen Hawking...imagine if he'd been...‘speechless before his theory of relativity’...”
  — Simon (23:47)
• “Kids can't look after themselves was what adults are for.”
  — Jordan, highlighting developmental context (26:12)
• “My heart goes out to every single neurodivergent person out there. Except Elon Musk. He can fuck off. And yeah, plenty of love.”
  — Jordan, ending on humor and solidarity (27:49)

Important Segment Timestamps

• 03:18 — Defining “severe autism” and critique of deficit-based language
• 06:31 — Reflection on why families of the most impaired often feel sidelined
• 10:14 — Emphasis on including and supporting the most impaired autistic individuals
• 14:24 — Personal parallels to stories of severe impairment
• 15:04 — Words matter: labels can both clarify and stigmatize
• 18:37 — Interdependence and invisible support needs
• 22:08 — The dangers of capping potential with early labels
• 23:47 — Communication challenges are often not linked to intelligence
• 25:01 — Suggestion: delay severe/profound labeling to adulthood
• 27:13 — Identifying the real need: support, not new labels

Tone and Language

The discussion is conversational, candid, and warm, blending advocacy and humor ("Except Elon Musk. He can fuck off.") with heartfelt concern for all autistic people. The hosts are passionate about community, wary of medical-model labels, and encourage a strengths-based, inclusive perspective.

Conclusion

Jordan and Simon challenge the wisdom and consequences of creating a “profound autism” category, arguing that early, rigid labels risk both reducing expectations for autistic people and perpetuating stereotypes. Support, understanding, and flexible, person-centered approaches—rather than new pathologizing labels—are what truly matter. Their insights are invaluable for anyone seeking to understand the fullness and diversity of neurodivergent experience.