Podcast Summary: The Autism Diagnosis Problem

Podcast: The Daily
Host: Rachel Abrams (New York Times), featuring reporter Azeen Qureshi and autism researcher Dr. Cathy Lord
Date: November 24, 2025

Main Theme

This episode explores the sharp rise in autism diagnoses in the U.S., critically examining the diagnosis itself, its evolving definition, and the divisive consequences this has had for individuals and families. While public figures (notably RFK Jr.) have pointed to environmental factors as the cause, The Daily unpacks how the diagnostic "tent" has broadened over decades—impacting access to resources and prompting fierce debate within the autism community itself.

Key Discussion Points & Insights

1. The “Epidemic” of Autism Diagnoses

• Timestamps: [00:31]–[02:28]
• Numbers in Focus:
  • In 2000: 1 in 150 eight-year-olds diagnosed
  • By 2025: 1 in 31 eight-year-olds diagnosed
• RFK Jr.’s Framing: He declares autism an environmental epidemic, blaming factors such as vaccines—positions widely debunked by experts.
• Expert Reality:
  • Azeen Qureshi: “The biggest reason…driving this increase actually has to do with how we define what autism is.” [02:48]
  • Expanded diagnostic criteria, not a true surge in cases, is the main driver.

2. Evolution of the Autism Diagnosis

• Timestamps: [03:16]–[12:40]
• Early Days (1970s–1980s):
  • Only children with very severe, visible disabilities were diagnosed.
  • Diagnosis equated with institutionalization, assumed “nothing can be done.”
    • Dr. Cathy Lord: “Don’t even try, just send them away and live your life because they’ll never be able to do anything, which is not true. But that is what people were telling them.” [06:11]
• Changes in the DSM:
  • 1980: Autism added with very narrow criteria—viewed as rare.
  • 1994: Criteria loosened; “Asperger’s” added for more nuanced cases.
• The Spectrum Emerges:
  • Definitions become squishy, often hinging on which clinician is consulted rather than clear scientific boundaries.
  • Dr. Lord: “The clinic in the Midwest would say somebody had autism, in a clinic in the east coast would say they had Asperger's.” [10:34]
  • This led to confusion and inconsistent support.

3. The Broad Autism “Tent” & Neurodiversity Movement

• Timestamps: [12:41]–[16:50]
• 2013 DSM Change:
  • All subtypes (including Asperger’s) merged into “Autism Spectrum Disorder.”
  • Dr. Lord’s involvement: She helped drive this decision as part of the DSM committee.
• Rise of Neurodiversity:
  • Autistic self-advocates (e.g., Temple Grandin) reframed autism as a difference, not a disease.
  • Cultural embrace: figures like Elon Musk and media featuring autistic characters—fostering acceptance and a sense of pride.
  • For some families, a diagnosis is now validating and a gateway to resources.

4. Unintended Consequences & Resource Tensions

• Timestamps: [18:05]–[25:19]
• Resource Strain in Schools:
  • Rising numbers mean more diverse needs, but support/resources haven’t kept up—especially for severely autistic children.
  • Azeen Qureshi: "They're being told their kids are too autistic to be in the classrooms that are actually designated for kids with autism." [19:55]
  • Parents report children being excluded even from specialized programs.
• Research Gaps:
  • Studies increasingly focus on higher-functioning individuals, marginalizing those with severe disabilities.
  • Qureshi: “The proportion of studies that included participants with severe autism declined from something like 95%...to just 35%.” [20:37]
• Intracommunity Divisions:
  • Self-advocates (those able to speak for themselves) and parents of profoundly autistic children can be at odds over priorities and representation.
  • Dr. Lord: “The idea...that they were representing autism as if they were experts on all forms of autism, that was certainly something that I had a hard time with, that I won’t forget.” [24:58]
  • Who gets to “speak for” the community?

5. The Case for “Profound Autism”

• Timestamps: [25:39]–[29:35]
• A New Distinction:
  • Dr. Lord and colleagues propose a “profound autism” category: those with minimal/no speech, low IQ, and needing 24-hour care—a move to target help for the most severely affected.
  • Qureshi: “Kathy is now proposing something that would chop up the spectrum once again.” [27:06]
• Hope & Uncertainty:
  • It is not (yet) a formal diagnosis; its hope is pragmatic recognition and better allocation, but no guarantees.
  • Concerns among self-advocates: could redefining categories re-stigmatize less severe cases or cut off their support?
  • Dr. Lord’s Dilemma: “I mean, I don’t know what to do, how to solve this, because I think the solution is not linear. It’s not going to be. You’re in this group, you’re in that group...I don’t think we could agree on three groups or four groups.” [29:35]

Notable Quotes & Memorable Moments

• Rachel Abrams: “So it goes from 1 in 150 to 1 in every 31 children.” [02:23]
• Dr. Cathy Lord:
  • On the past: “They should send their kids away and live your life because they’ll never be able to do anything, which is not true.” [06:11]
  • On diagnostic chaos: “It was very confusing and resulted in kids who often, over a lifetime, might get an autism diagnosis, then an Asperger's diagnosis, and then sometimes have to come back to an autism diagnosis.” [10:48]
  • On expanding criteria: “We then said, wait a minute, we need to make this broader.” [09:06]
  • On her regrets: “I do think it has backfired to some degree...we have contributed unwittingly to having diagnoses that are very complicated.” [28:46]
• Azeen Qureshi:
  • On resource scarcity: “The pool of resources is not expanding at the same rate as the number of children with autism is expanding.” [19:55]
  • On representation: “Who gets to speak for the community when there are such broad needs and the people on the most severe end of the spectrum often cannot speak for themselves." [22:53]
• Rachel Abrams, on the tragic irony: “In so doing, they now fear that that work might have harmed some of the people who needed it most.” [30:46]

Timestamped Structure of the Episode

• 00:31–02:28: Introduction of the topic; statistical rise in diagnoses; political claims vs. scientific understanding
• 03:16–12:40: History of autism’s definition, the DSM, and how the “tent” widened over time; Dr. Lord’s story and vantage
• 12:41–16:50: Rise of the neurodiversity movement; cultural shifts and implications of normalization
• 18:05–25:19: Resource bottlenecks and disconnects—school, research, and intra-community friction
• 25:39–29:35: Proposal for category of “profound autism”; debate over splitting the spectrum
• 29:36–31:58: Reflections, unresolved questions, and the lack of easy solutions

Tone & Takeaways

The episode remains rigorously journalistic and empathetic, giving voice to both self-advocates and parents struggling for support, while chronicling the messy evolution of the autism diagnosis. There’s a sense of sadness and irony—years of fighting for inclusion have, for some, made inclusion harder. The episode closes with unresolved questions about labels, identity, and how diagnosis can both help and harm.

Final Reflection

The complexities of defining autism reflect broader challenges in medicine: where to draw lines, how to balance individual needs with group identity, and how to allocate limited resources fairly. “Autism spectrum disorder” is no longer just a medical label—it’s a dynamic social identity, a resource gateway, and a flashpoint for debate.

“Where is the line between a disability and a difference? Who should be speaking for a community that is as broad as this one?...These are still unanswered.” —Azeen Qureshi [31:11]