Living on the Spectrum — Show Notes

Overview: This episode discusses a new CDC estimate of profound autism prevalence and how a changed definition affects the headline; an explainer on maternal infection and autism likelihood that emphasizes uncertainty; an exploratory comparative genomics study linking birdsong-related DNA sequences to autism-linked genes; and four ADDitude pieces on ADHD self-compassion, conversation skills, choosing a therapist, and a parent’s first-person account of perimenopause and puberty. The conversation highlights measurement limits, non-causal findings, and reflective rather than prescriptive advice.

Prevalence of profound autism declines with new definition

Source: The Transmitter

The Transmitter’s Brianna Abbott reported on a study by Joshua Anbar and colleagues in the Journal of the American Academy of Child & Adolescent Psychiatry. The study applied a 2026 Delphi consensus definition to 2022 surveillance data from 13 sites in the CDC’s Autism and Developmental Disabilities Monitoring Network. Under that definition, nearly 17% of 8-year-old autistic children in the United States met criteria for profound autism, down from 27% in a 2023 CDC estimate.

The Delphi definition combines adaptive functioning far below age level with either an IQ below 50 or minimal to no verbal abilities. Adaptive functioning refers to everyday skills such as self-care, communication, and daily routines. The earlier 2023 estimate used the 2021 Lancet Commission definition, which described profound autism as requiring 24-hour care as an adult and, in most cases, IQ below 50 or limited verbal abilities. The Lancet group also said the term is not appropriate for children under 8. The hosts noted this is not a simple before-and-after comparison of the same measure.

Matthew Siegel, who was not involved in the new study but was in the Delphi group, said the updated definition includes adaptive scores and makes the group more precise. He also said the overall autistic population has grown, so children with profound autism make up a smaller proportion. He described the group as getting “a little smaller, more precise,” while “the denominator is getting bigger.” Siegel still called the estimate sobering: “That’s a big group of children and families who need intensive support and services.”

The study found wide variation across sites—10% in Utah to 35% in Laredo, Texas. Joshua Anbar said evaluation and diagnostic practices vary across communities, which may contribute to that range. In the same data, the 2021 Lancet definition produced a prevalence 34% higher than the updated Delphi definition. Raising the IQ cutoff to 70 produced a prevalence 71% higher than Delphi. Using only verbal status and adaptive scores, without IQ, lowered prevalence by 33% compared with Delphi.

The data were incomplete. Among 7,084 autistic children in the dataset, 61% had recorded IQ information, 74% had verbal-status data, 56% had adaptive-score data, and 54% had all the information the team needed. The researchers used a statistical method to predict missing values. Catherine Lord, who was not involved, told The Transmitter that “the missing data is a huge problem” and likely is not random—IQ scores are harder to capture in children more likely to fall into the profound autism category.

Siegel also noted that none of the definitions directly measure the core issue of whether someone needs round-the-clock access to an adult caregiver. He called that “a key gap in the field that’s begging to be filled.” The study uses proxy measures. A CDC spokesperson quoted in the article said the work contributes to an important issue by describing evaluation practices and the impact of different definitions, and that practices and definitions can evolve to better understand and meet needs. The hosts framed this as a measurement story with real-world weight, not evidence that profound autism is disappearing.

Slight increase in autism likelihood observed with maternal infection

Source: The Transmitter

The Transmitter explainer by Charles Q. Choi, from 2022, reviews two decades of studies. Multiple studies link severe infection during pregnancy to a slight increase in the likelihood of having an autistic child. But most pregnant people who become ill do not have an autistic child. The article says it is not yet clear whether maternal infection actually contributes to autism or is simply more likely among mothers of autistic children.

A large 2014 study found that being hospitalized with an infection during pregnancy may raise the chances by 37%, but the article says the overall increase is still small: from 1% to 1.3%. A 2016 meta-analysis of 15 studies found that illness during the second or third trimester may boost the likelihood by 13 to 14 percent, while first-trimester infection did not appear to have a significant effect.

A 2022 Swedish study focused on prenatal infections severe enough to require specialized health care. Brian Lee, an investigator on that study, said it does not disprove a link, but it shows familial genetics is somehow involved. Charis Eng said the findings suggest the link may be more modest than previously thought. The researchers did not rule out milder infections or rare contagions, and women or children with a genetic predisposition may respond differently.

Animal studies support biological plausibility, with caveats. Christopher Coe told The Transmitter that lab animal studies tend to use more severe infections or experimental manipulations that create large inflammatory reactions, so they are more likely to produce bigger and more persistent effects than typical human infections. Melissa Bauman said the vast majority of pregnancies appear to resist these disruptions, but a subset of women may be vulnerable, and it is not yet known which pregnancies are most vulnerable.

The hosts emphasized that the takeaway is not blame or panic: infection is one factor among many, with a lot of uncertainty. Brian Lee framed infection as modifiable, which is why it is worth studying. The article also discusses COVID-19: severe COVID-19 is associated with pregnancy complications like preterm birth, which are linked with a greater chance of autism, but that is not the same as proving COVID causes autism. Coe advised people planning a child to take available safe vaccines, and the article notes that studies cited indicate the Moderna and Pfizer vaccines are safe during pregnancy. Personal medical questions belong with a clinician.

Birdsong-related DNA sequences tied to autism-linked genes

Source: The Transmitter

The Transmitter’s Laura Dattaro reported on a comparative genomics study. Researchers led by Erich Jarvis at Rockefeller University compared genomes from 33 bird species. They identified accelerated regions—sequences that changed more in vocal-learning birds than in birds without vocal learning—in songbirds, parrots, and hummingbirds. In songbirds and parrots, those regions were concentrated in noncoding portions that control speech and language genes, including FOXP2 and MEF2C, both linked to autism. Another 64 regions are accelerated in both vocal-learning birds and people; many lie near FOXP2, MEF2C, or NR2F1, another autism-associated gene. Jarvis said an unpublished analysis linked the regions to genes mutated in minimally verbal autistic children.

The causal link is not proven. Jarvis called the correlation “pretty striking” but not proof. Independent researchers cautioned that bird and human language biology may differ; Emily Casanova noted birds’ cortical structure is different and they last shared a common ancestor with humans a very long time ago. The hosts described the work as exploratory and interesting, not a diagnostic tool.

You Are Not the Sum of Your ADHD Challenges

Source: Additude

The self-compassion piece is by Michelle Frank and Sari Solden, adapted from their book A Radical Guide for Women with ADHD and a 2019 ADDitude webinar. It is clinical commentary and self-help, not a research study. The authors argue that all-or-nothing thinking can drive low self-esteem in women with ADHD—“I’m smart or dumb,” “motivated or lazy.” They offer a five-step framework: stop trying to “fix” yourself, use a “yes, and” mindset, understand your strengths and challenges, follow your values as an internal compass, and write a personal mission statement. The idea is to hold strengths and struggles in one picture.

The authors acknowledge that people may struggle with the no-fix message and wish ADHD would go away. The article focuses on women and girls and does not claim to apply to everyone. It also does not report evidence that these techniques improve self-esteem; it is a reflective framework. The hosts noted it may resonate for parents but does not replace practical support.

Conversational Skills: An ADHD Guide

Source: Additude

Sharon Saline’s conversation guide uses the APPLE acronym and challenges the assumption that everyone knows the unspoken rules of conversation. The author notes that some people with ADHD, learning differences, and/or autistic individuals may not understand those rules or may never have learned them, and anxiety can affect social skills. The steps are: ask to join and assess; pay attention to proximity and volume; participate by reflecting back what you heard—such as “So what you’re saying is…”—and staying curious without judging; lay off self-criticism; and enjoy connecting. It also suggests acknowledging your departure instead of just leaving.

The hosts framed the advice as optional, noting that social skills guidance can easily become “act normal” pressure. The article itself says some people may not have learned these rules, so it is not about blame. The hosts presented the steps as optional tools, not requirements for being acceptable, and not a substitute for understanding someone’s communication style.

10 Therapists to Avoid

Source: Additude

Frank South’s “10 Therapists to Avoid” is explicitly subjective—he calls the list “entirely subjective,” based on his own 40 years of on-and-off therapy and suggestions from friends and ADDitude readers. It is humorous, not clinical guidance. The useful part is the checklist: warning signs include impatience, superficial listening, quick solutions, self-importance, and undermining confidence. Signs of a good therapist include not rushing, really listening, taking concerns seriously, engaging as a human being, and building confidence. The hosts noted this is one person’s take, not a validated instrument.

When Perimenopause and Puberty Clash

Source: Additude

Kizzy Petit’s ADDitude Caregiver Blog describes a single mother and her 12-year-old AuDHD—autistic and ADHD—daughter going through what Petit calls a “double hormone storm.” Petit describes her own restless nights, brain fog, aching joints, and changing moods—and the feeling that her body no longer follows the rules it used to—while her daughter’s puberty brought big emotions, overwhelm, and anxiety. She says she learned that the menstrual cycle can affect ADHD symptoms and that perimenopause hormones can affect focus, mood, and coping, and she wondered how many hard evenings she had misread. It is a first-person essay, not research; it does not establish that hormones caused specific behaviors, and Petit explicitly says she has not “cracked the code.”

The useful part is the rituals: dinner with her phone away, long walks because talking is easier without eye contact, hot chocolate on rough days, journals or drawings for things they cannot say aloud, a dumb joke to cut tension, and letting each other start over. She says connection matters more than getting it perfect, and her message to other mothers is that they are not failing—they may just be standing in the middle of two enormous transitions at once.

Podcast Transcript

Aaron: Welcome to Living on the Spectrum. I'm Aaron, and I'm here with Jamie. We're starting with a headline that sounds like good news but is more complicated: a new CDC estimate says nearly 17% of 8-year-old autistic children in the United States meet criteria for profound autism. That's down from 27% in a 2023 CDC estimate. Jamie, what changed?

Jamie: Mostly the definition and the size of the overall autistic population. The Transmitter's Brianna Abbott reported on a study by Joshua Anbar and colleagues in the Journal of the American Academy of Child & Adolescent Psychiatry. They applied a 2026 Delphi consensus definition to 2022 surveillance data from 13 sites in the CDC's Autism and Developmental Disabilities Monitoring Network. The Delphi definition is adaptive functioning far below age level plus either an IQ below 50 or minimal to no verbal abilities.

Aaron: Adaptive functioning means everyday skills—self-care, communication, daily routines?

Jamie: Yes. The earlier 2023 estimate used the 2021 Lancet Commission definition, which described profound autism as requiring 24-hour care as an adult and, in most cases, IQ below 50 or limited verbal abilities. The Lancet group also said the term isn't appropriate for children under 8. So this isn't a simple before-and-after of the same measure. Matthew Siegel, who wasn't involved in the new study but was in the Delphi group, told The Transmitter that the updated definition includes adaptive scores and makes the group more precise. He also said the overall autistic population has grown, so children with profound autism make up a smaller proportion. He described the group as getting "a little smaller, more precise," while "the denominator is getting bigger."

Aaron: So the percentage fell, but the number of families needing intensive support could still be large.

Jamie: Siegel said he still finds the estimate sobering: "That's a big group of children and families who need intensive support and services." The study also found wide variation across sites—10% in Utah to 35% in Laredo, Texas. Joshua Anbar said evaluation and diagnostic practices vary across communities, which may contribute to that range.

Aaron: What about the definitions themselves? Did the study compare them?

Jamie: Yes. In the same data, the 2021 Lancet definition produced a prevalence 34% higher than the updated Delphi definition. Raising the IQ cutoff to 70 produced a prevalence 71% higher than Delphi. Using only verbal status and adaptive scores, without IQ, lowered prevalence by 33% compared with Delphi. So the same data can tell different stories depending on the definition.

Aaron: And the data are incomplete.

Jamie: That's a major caveat. Among 7,084 children with autism in the dataset, only 61% had recorded IQ information, 74% had verbal-status data, 56% had adaptive-score data, and 54% had all the information the team needed. They used a statistical method to predict missing values. Catherine Lord, who wasn't involved, told The Transmitter that "the missing data is a huge problem," and likely isn't random—IQ scores are harder to capture in children more likely to fall into the profound autism category.

Aaron: Siegel also pointed out that none of the definitions directly measure the core issue—whether someone needs round-the-clock access to an adult caregiver.

Jamie: Right. He called that "a key gap in the field that's begging to be filled." The study uses proxy measures. The CDC spokesperson quoted in the article said this work contributes to an important issue by describing evaluation practices and the impact of different definitions, and that practices and definitions can evolve to better understand and meet needs. I'd frame this as a measurement story with real-world weight, not evidence that profound autism is disappearing.

Aaron: Good. Let's turn to a headline that can scare parents: maternal infection during pregnancy and autism. What does the evidence actually say?

Jamie: The Transmitter explainer by Charles Q. Choi, from 2022, reviews two decades of studies. Multiple studies link severe infection during pregnancy to a slight increase in the likelihood of having an autistic child. But most pregnant people who become ill do not have an autistic child. And the article says it's not yet clear whether maternal infection actually contributes to autism or is simply more likely among mothers of autistic children.

Aaron: There's a 37% figure that gets shared.

Jamie: Yes, but context matters. A large 2014 study found that being hospitalized with an infection during pregnancy may raise the chances by 37%, but the article says the overall increase is still small: from 1% to 1.3%. A 2016 meta-analysis of 15 studies found that illness during the second or third trimester may boost the likelihood by 13 to 14 percent, while first-trimester infection did not appear to have a significant effect.

Aaron: And a newer Swedish study?

Jamie: A 2022 Swedish study focused on prenatal infections severe enough to require specialized health care. Brian Lee, an investigator on that study, said it doesn't disprove a link, but it shows familial genetics is somehow involved. Charis Eng said the findings suggest the link may be more modest than previously thought. The researchers didn't rule out milder infections or rare contagions, and women or children with a genetic predisposition may respond differently.

Aaron: What about animal studies?

Jamie: They support biological plausibility, with caveats. Christopher Coe told The Transmitter that lab animal studies tend to use more severe infections or experimental manipulations that create large inflammatory reactions, so they're more likely to produce bigger and more persistent effects than typical human infections. Melissa Bauman said the vast majority of pregnancies appear to resist these disruptions, but a subset of women may be vulnerable, and we don't yet know which pregnancies are most vulnerable.

Aaron: So the takeaway isn't blame or panic. It's one factor among many, with a lot of uncertainty.

Jamie: Yes. Brian Lee framed infection as modifiable, which is why it's worth studying. The article also discusses COVID-19: severe COVID-19 is associated with pregnancy complications like preterm birth, which are linked with a greater chance of autism, but that's not the same as proving COVID causes autism. The explainer quotes Coe advising people planning a child to take available safe vaccines, and notes studies cited indicate the Moderna and Pfizer vaccines are safe during pregnancy. Personal medical questions belong with a clinician.

Aaron: There's also a very different research story—birdsong and autism-linked genes.

Jamie: It's a comparative genomics study reported by The Transmitter's Laura Dattaro. Researchers led by Erich Jarvis at Rockefeller University compared genomes from 33 bird species. They identified accelerated regions—sequences that changed more in vocal-learning birds than in birds without vocal learning—in songbirds, parrots, and hummingbirds. In songbirds and parrots, those regions were concentrated in noncoding portions that control speech and language genes, including FOXP2 and MEF2C, both linked to autism. Another 64 regions are accelerated in both vocal-learning birds and people; many lie near FOXP2, MEF2C, or NR2F1, another autism-associated gene. Jarvis says an unpublished analysis linked the regions to genes mutated in minimally verbal autistic children.

Aaron: But the causal link isn't proven?

Jamie: Correct. Jarvis called the correlation "pretty striking" but not proof. Independent researchers cautioned that bird and human language biology may differ; Emily Casanova noted birds' cortical structure is different and they last shared a common ancestor with humans a very long time ago. This is exploratory and interesting, not a diagnostic tool.

Aaron: Let's bring it back to everyday life. There are a few ADHD pieces—self-compassion, conversation skills, and finding a therapist. What's the useful thread?

Jamie: The self-compassion piece is by Michelle Frank and Sari Solden, adapted from their book A Radical Guide for Women with ADHD and a 2019 ADDitude webinar. It's clinical commentary and self-help, not a research study. The authors argue that all-or-nothing thinking can drive low self-esteem in women with ADHD—"I'm smart or dumb," "motivated or lazy." They offer a five-step framework: stop trying to "fix" yourself, use a "yes, and" mindset, understand your strengths and challenges, follow your values as an internal compass, and write a personal mission statement. The idea is to hold strengths and struggles in one picture.

Aaron: I can see that landing for parents, too. But it doesn't replace practical support.

Jamie: Right. The authors acknowledge that people may struggle with the no-fix message and wish ADHD would go away. The article focuses on women and girls and doesn't claim to apply to everyone. It also doesn't report evidence that these techniques improve self-esteem—it's a reflective framework.

Aaron: The conversation guide by Sharon Saline uses the APPLE acronym. What's the core idea?

Jamie: It challenges the assumption that everyone knows the unspoken rules of conversation. The author notes that some people with ADHD, learning differences, and/or autistic individuals may not understand those rules or may never have learned them, and anxiety can affect social skills. The steps are: ask to join and assess; pay attention to proximity and volume; participate by reflecting back what you heard—like "So what you're saying is…"—and staying curious without judging; lay off self-criticism; and enjoy connecting. It also suggests acknowledging your departure instead of just leaving.

Aaron: I'd frame that as optional. Social skills advice can easily become "act normal" pressure.

Jamie: Agreed. The article itself says some people may not have learned these rules, so it's not about blame. I'd present them as optional tools, not requirements for being acceptable, and not a substitute for understanding someone's communication style.

Aaron: And the therapist essay?

Jamie: Frank South's "10 Therapists to Avoid" is explicitly subjective—he calls the list "entirely subjective," based on his own 40 years of on-and-off therapy and suggestions from friends and ADDitude readers. It's humorous, not clinical guidance. The useful part is the checklist: warning signs include impatience, superficial listening, quick solutions, self-importance, and undermining confidence. Signs of a good therapist include not rushing, really listening, taking concerns seriously, engaging as a human being, and building confidence. That's one person's take, not a validated instrument.

Aaron: The most human piece might be Kizzy Petit's ADDitude Caregiver Blog about perimenopause and puberty. She's a single mother, her daughter is 12 and AuDHD—autistic and ADHD—and they're going through what Petit calls a "double hormone storm."

Jamie: Yes. She describes her own restless nights, brain fog, aching joints, and changing moods—and the feeling that her body no longer follows the rules it used to—while her daughter's puberty brought big emotions, overwhelm, and anxiety. She says she learned that the menstrual cycle can affect ADHD symptoms and that perimenopause hormones can affect focus, mood, and coping, and she wondered how many hard evenings she had misread. It's a first-person essay, not research—it doesn't establish that hormones caused specific behaviors, and Petit explicitly says she hasn't "cracked the code."

Aaron: What's useful in it?

Jamie: The rituals. Dinner with her phone away, long walks because talking is easier without eye contact, hot chocolate on rough days, journals or drawings for things they can't say aloud, a dumb joke to cut tension, and letting each other start over. She says connection matters more than getting it perfect, and her message to other mothers is that they aren't failing—they might just be standing in the middle of two enormous transitions at once.

Aaron: That's a good place to land. We covered a definition change that shifts a headline, a maternal-infection explainer that's mostly about uncertainty, an exploratory birdsong study, and some ADHD and family perspectives that are more about reflection than prescription.

Jamie: For listeners who want the details, the original articles and links are on the episode page. Thanks for listening.

Aaron: Thanks for being with us. Take care.

References

• Prevalence of profound autism declines with new definition
• Slight increase in autism likelihood observed with maternal infection
• Birdsong-related DNA sequences tied to autism-linked genes
• You Are Not the Sum of Your ADHD Challenges
• 10 Therapists to Avoid
• When Perimenopause and Puberty Clash
• Conversational Skills: An ADHD Guide