Overview: The episode opens with a CDC estimate that nearly 17% of 8-year-old autistic children in the U.S. meet criteria for profound autism, down from 27% in 2023. The hosts explain that the change reflects a newer, more precise definition and growth in the overall autistic population—not a simple drop in need—and note contested definitions, missing data, and proxy measures. The episode then covers special education funding, complex ADHD, OCD overlap, an ADHD sleep survey, parent-teacher conferences, and a profile of Madelynn M.
How is special education funded?
The Understood piece by Carly Berwick explains that IDEA promised federal coverage of 40% of average per-student special education costs, but federal funding has covered less than 13% since 1975. More than 7.5 million K–12 students receive special education services.
In fiscal year 2023, average special education cost per student was $17,528, according to a Bellwether analysis; only about $6,775 was covered by federal and state funds. Part B made up about 95% of the $15.4 billion Congress provided for IDEA in 2025. For fiscal 2027, Congress proposed $15.5 billion and the administration $15.99 billion—far short of 40%. A bipartisan IDEA Full Funding Act would phase in full federal funding over 10 years, but it is still under review.
The segment also notes Education Department staff cuts and that funding formulas do not change a child’s legal right to a free appropriate public education. IEPs come from IDEA; 504 plans come from Section 504 of the Rehabilitation Act and have no dedicated federal funding stream, so schools pay from general budgets. The hosts advise parents who are worried to put concerns in writing and ask about the specific service or accommodation, not the whole budget.
Treating the Hidden Complexities of ADHD
The ADDitude feature by Dr. Timothy Wilens discusses “complex ADHD”—ADHD alongside depression, anxiety, bipolar disorder, OCD, substance use, eating disorders, autism, or executive dysfunction. About three-quarters of adults with ADHD have at least one coexisting condition, and up to 80% of children have a co-occurring disorder.
Treatment often involves more than one medication and a sequence of decisions. The general principle is to treat the more severe condition first; untreated bipolar or panic disorder can undermine ADHD treatment. With mild anxiety, it can make sense to treat ADHD first and reassess, because anxiety sometimes improves. Stimulants generally do not have major drug interactions, but some non-stimulants—atomoxetine and viloxazine—can affect blood levels of other medications. In autistic patients, ADHD medications may be less effective and cause more side effects; one cited figure was a 50% response rate versus 70–80% in children with ADHD without autism. The guidance is to start slowly, monitor closely, and aim for good treatment with manageable side effects rather than the “best.”
The hosts emphasize that combination therapy is not a recipe but trial and error with a clinician. Untreated OCD can impede ADHD treatment; worsening depression can worsen ADHD response, and treating depression may improve it. Decisions about starting, stopping, or combining medications belong with a qualified prescriber.
When OCD and ADHD Coexist
The ADDitude piece by Dr. Roberto Olivardia notes that most research has looked at ADHD in people with OCD, with rates mostly around 30%. ADHD is often missed in OCD patients and vice versa. Surface behaviors can look similar, but the drivers differ.
The article describes OCD with increased activity in frontal and striatal regions and ADHD with decreased activity in similar regions—group-level research, not a brain scan diagnosis. Pure-O, obsessions without visible compulsions, is often misidentified as anxiety. Hoarding can come from ADHD impulse buying and feel ego-dystonic, while classic OCD hoarding tends to involve saving, sentimental value, and less bother by clutter. Body-focused repetitive behaviors can serve stimulation or focus in ADHD.
Treatment often means treating both conditions, with SSRIs for OCD and stimulants for ADHD. However, stimulants may worsen OCD in some people and help when OCD is triggered by inattention. Exposure and response prevention, or ERP, is first-line for OCD, with adaptations such as coaching and scheduled practice.
Never-Never-Ever Land
The ADDitude sleep survey included more than 3,000 readers—2,156 adults with ADHD and 940 caregivers of children and teens. Adults averaged 5 hours 51 minutes of continuous sleep; one in five slept less than half of the seven-to-eight hours cited as needed. Ninety-one percent reported changes in mood, concentration, memory, or energy; 68% reported an adverse event such as job loss or a car accident due at least partly to poor sleep.
Children averaged 7 hours 28 minutes; less than half of teens met the eight-hour benchmark, and 73% took 30 minutes or more to fall asleep. Reported sleep disorders included chronic insomnia in 34% of adults and 26% of children and teens; delayed sleep phase in 28% and 32%; sleep apnea in 25% and 9%; and restless legs in 21% and 13%.
The survey found no evidence that stimulants significantly help or hurt sleep overall. Children on stimulants were less likely to have delayed sleep phase—28% versus 42%. Adults on stimulants were slightly more likely to have delayed sleep phase—30% versus 26%—but less likely to have insomnia, 33% versus 37%, and restless legs, 20% versus 23%, and slept 11 minutes longer. This is survey data, not a trial, so it should not be turned into a rule; the stimulant should not always be assumed to be the culprit.
The article also found associations with exercise and screens: adults who exercised more slept more and spent two hours less daily on screens. Children with little or no exercise spent 6 hours 37 minutes daily on screens; those with the recommended amount spent half as much and slept more. Caregivers who rated bedtime routines 5 out of 5 reported 8 hours 36 minutes of sleep—15% longer than average. These associations do not prove causation.
The survey is self-selected, and causes are murky, but routines, light, activity, and arousal matter. Low reader ratings for CBT-I—1.67 for children and 2.22 for adults—are not proof it does not work; it is a standard treatment for chronic insomnia, and ratings may reflect access or whether people actually received it. The hosts suggest asking about sleep disorders rather than just blaming medication.
Make the most of parent-teacher conferences
The Understood guide says most parent-teacher conferences last 10 to 15 minutes—tighter with an IEP or 504 plan. Parents should bring a copy of the plan, choose three to five top questions, and tie them to a specific accommodation and assignment. Kate Garcia’s example: “The plan says extra time on tests. Did my child get it on last week’s math test?” Parents can ask which accommodations are used, how the teacher knows they work, and whether services are delivered as often as the plan says.
A conference is not an IEP meeting. If the concern involves accommodations, placement, or services, parents can request an IEP team meeting at any time. The segment advises asking for interpretation early—it can need up to 72 hours—and sending a short recap email listing who does what and by when.
Get to know Madelynn M.
The Autism Speaks profile features Madelynn M., a 20-year-old autistic entrepreneur, college student, and public speaker in Houston. Diagnosed at 18 months, she had speech and occupational therapy and participated in Girl Scouts. One doctor said she might never speak, read, write, or lead a “normal” life; a second opinion at Georgetown offered hope. Her first word was “ice cream.” At nine, she started a baking business; Madelynn’s Bake Sale sold out in 45 minutes. She is now at the University of St. Thomas with a 3.64 GPA and plans for an associate degree in spring 2027, then a bachelor’s and MBA. She advises employers to give people with disabilities a chance.
The hosts note that this is one person’s story, not a template. Early support and opportunities mattered, and so did her agency—she asked, “Why can’t I do it now?” Autistic people have different support needs and paths. The point is not “if she can, everyone can”; it is that early assumptions are not destiny, and inclusive workplaces can open doors.
Podcast Transcript
Aaron: Welcome to Living on the Spectrum. I'm Aaron, and I'm joined by Jamie. We're starting with a number that sounds simple and isn't: nearly 17 percent of 8-year-old autistic children in the U.S. meet the criteria for profound autism, according to a new CDC estimate. That's down from 27 percent in 2023. My first thought was, did the need go down? Jamie, what's going on?
Jamie: Not exactly. The new study applied a newer Delphi consensus definition to 2022 CDC surveillance data from 13 sites—7,084 8-year-olds. The definition is adaptive functioning far below age level plus either an IQ below 50 or minimal to no verbal abilities. The 2023 estimate used the 2021 Lancet Commission definition—even though the commission said the term wasn't meant for children under 8. That definition described people who need 24-hour care as adults and often have IQ below 50 or limited verbal ability. So the drop is tied to a more precise definition and to growth in the overall autistic population. Matthew Siegel, who wasn't involved, said the group meeting the definition is getting smaller and more precise while the denominator is getting bigger. He also called the estimate sobering because it's still a large number of children and families who need intensive support.
Aaron: So "profound" is about support needs, not a person's value. But why is the definition contested?
Jamie: Because different definitions give different rates. In the same study, the Lancet definition produced 34 percent higher prevalence than the Delphi definition; an IQ cutoff of 70 produced 71 percent higher; dropping IQ lowered it by 33 percent. Across sites it ranged from 10 percent in Utah to 35 percent in Laredo, Texas. There's also missing data: among 7,084 children, 61 percent had IQ data, 74 percent had verbal-status data, 56 percent had adaptive scores, and 54 percent had everything. The team imputed missing values. Catherine Lord, who wasn't involved, said the missing data is a huge problem and likely not random, because IQ is harder to capture in children more likely to be in the profound category. Siegel added that none of the definitions directly measure round-the-clock caregiver need; they use proxy measures.
Aaron: The everyday takeaway is not to hear "down from 27 to 17" as "fewer families need help." The measuring stick changed. Labels can open doors to services, but they shouldn't become the whole identity.
Jamie: Right. And labels are administrative and clinical tools as well as personal ones. They can shape eligibility, but they don't tell you what a particular person needs day to day.
Aaron: That leads to funding. An Understood piece by Carly Berwick explains that IDEA promised the federal government would cover 40 percent of average per-student special education costs. Since 1975, federal funding has covered less than 13 percent. More than 7.5 million K-12 students receive special education services.
Jamie: And the gap is concrete. In fiscal year 2023, average special education cost per student was $17,528, according to a Bellwether analysis; only about $6,775 was covered by federal and state funds. Part B made up about 95 percent of the $15.4 billion Congress provided for IDEA in 2025. For fiscal 2027, Congress proposed $15.5 billion and the administration $15.99 billion—far short of 40 percent. A bipartisan IDEA Full Funding Act would phase in full federal funding over 10 years, but it's still under review.
Aaron: The article also notes Education Department staff cuts and that funding formulas don't change a child's legal right to a free appropriate public education. And 504 plans have no dedicated federal funding stream; schools pay from general budgets.
Jamie: Right. An IEP comes from IDEA; a 504 comes from Section 504 of the Rehabilitation Act. The legal entitlement still exists, but practical resources vary by state and district. If parents are worried, put concerns in writing and ask about the specific service or accommodation, not the whole budget.
Aaron: Let's turn to ADHD. An ADDitude feature by Dr. Timothy Wilens on "complex ADHD"—ADHD plus depression, anxiety, bipolar, OCD, substance use, eating disorders, autism, or executive dysfunction—says about three-quarters of adults with ADHD have at least one coexisting condition, and up to 80 percent of children have a co-occurring disorder. That changes the treatment conversation.
Jamie: It does. Treatment often involves more than one medication and a sequence of decisions. The general principle is to treat the more severe condition first; untreated bipolar or panic disorder can undermine ADHD treatment. With mild anxiety, it can make sense to treat ADHD first and reassess, because anxiety sometimes improves. Stimulants generally don't have major drug interactions, but some non-stimulants—atomoxetine and viloxazine—can affect blood levels of other medications. In autistic patients, ADHD meds may be less effective and cause more side effects; one cited figure was a 50 percent response rate versus 70 to 80 percent in children with ADHD without autism. Start slowly, monitor closely, and aim for good treatment with manageable side effects rather than the "best."
Aaron: So "combination therapy" isn't a recipe; it's trial and error with a clinician.
Jamie: Exactly. And the conditions interact. Untreated OCD can impede ADHD treatment; worsening depression can worsen ADHD response, and treating depression may improve it. Decisions about starting, stopping, or combining medications belong with a qualified prescriber.
Aaron: There's also an ADDitude piece by Dr. Roberto Olivardia on OCD and ADHD. Most research has looked at ADHD in people with OCD, with rates mostly around 30 percent. ADHD is often missed in OCD patients and vice versa. Why?
Jamie: Surface behaviors look similar, but drivers differ. The article describes OCD with increased activity in frontal and striatal regions and ADHD with decreased activity in similar regions—group-level research, not a brain scan diagnosis. Pure-O, obsessions without visible compulsions, is often misidentified as anxiety. Hoarding can come from ADHD impulse buying and feel ego-dystonic, while classic OCD hoarding tends to involve saving, sentimental value, and less bother by clutter. Body-focused repetitive behaviors can serve stimulation or focus in ADHD. Treatment often means treating both, with SSRIs for OCD and stimulants for ADHD, but stimulants may worsen OCD in some people and help when OCD is triggered by inattention. Exposure and response prevention, or ERP, is first-line for OCD, with adaptations like coaching and scheduled practice.
Aaron: The ADDitude sleep survey was both relatable and concerning. It included more than 3,000 readers—2,156 adults with ADHD and 940 caregivers of children and teens. Adults averaged 5 hours 51 minutes of continuous sleep; one in five slept less than half the seven-to-eight hours needed. Ninety-one percent reported changes in mood, concentration, memory, or energy; 68 percent reported an adverse event like job loss or a car accident due at least partly to poor sleep.
Jamie: Children averaged 7 hours 28 minutes; less than half of teens met the eight-hour benchmark, and 73 percent took 30 minutes or more to fall asleep. Reported sleep disorders included chronic insomnia in 34 percent of adults and 26 percent of children and teens; delayed sleep phase in 28 and 32 percent; sleep apnea in 25 and 9 percent; and restless legs in 21 and 13 percent.
Aaron: What about stimulants?
Jamie: The survey found no evidence stimulants significantly help or hurt sleep overall. Children on stimulants were less likely to have delayed sleep phase—28 versus 42 percent. Adults on stimulants were slightly more likely to have delayed sleep phase—30 versus 26 percent—but less likely to have insomnia, 33 versus 37 percent, and restless legs, 20 versus 23 percent, and slept 11 minutes longer. This is survey data, not a trial, so don't turn it into a rule. But don't assume the stimulant is always the culprit.
Aaron: The article also found associations with exercise and screens: adults who exercised more slept more and spent two hours less daily on screens. Kids with little or no exercise spent 6 hours 37 minutes daily on screens; those with the recommended amount spent half as much and slept more. Caregivers who rated bedtime routines 5 out of 5 reported 8 hours 36 minutes of sleep—15 percent longer than average. That doesn't prove causation.
Jamie: Right. The survey is self-selected, and the causes are murky. But routines, light, activity, and arousal matter. The low reader ratings for CBT-I—1.67 for children and 2.22 for adults—aren't proof it doesn't work; it's a standard treatment for chronic insomnia, and ratings may reflect access or whether people actually received it. Ask about sleep disorders rather than just blaming medication.
Aaron: One practical school note: Understood's guide on parent-teacher conferences says most last 10 to 15 minutes—tighter with an IEP or 504 plan. Bring a copy of the plan, choose three to five top questions, and tie them to a specific accommodation and assignment. Kate Garcia's example: "The plan says extra time on tests. Did my child get it on last week's math test?" Ask which accommodations are used, how the teacher knows they work, and whether services are delivered as often as the plan says.
Jamie: A conference is not an IEP meeting. If the concern involves accommodations, placement, or services, parents can request an IEP team meeting at any time. Ask for interpretation early—it can need up to 72 hours—and send a short recap email listing who does what and by when.
Aaron: Let's end with an Autism Speaks profile of Madelynn M., a 20-year-old autistic entrepreneur, college student, and public speaker in Houston. Diagnosed at 18 months, she had speech and occupational therapy and Girl Scouts. One doctor said she might never speak, read, write, or lead a "normal" life; a second opinion at Georgetown offered hope. Her first word was "ice cream." At nine, she started a baking business; Madelynn's Bake Sale sold out in 45 minutes. Now she's at the University of St. Thomas with a 3.64 GPA and plans for an associate degree in spring 2027, then a bachelor's and MBA. She advises employers to give people with disabilities a chance.
Jamie: It's one person's story, not a template. Early support and opportunities mattered, and so did her agency—she asked, "Why can't I do it now?" But autistic people have different support needs and paths. The point isn't "if she can, everyone can"; it's that early assumptions aren't destiny, and inclusive workplaces can open doors.
Aaron: Today we covered the new profound autism estimate, the IDEA funding gap, complex ADHD and OCD overlap, the sleep survey, and conference prep. Article summaries and original links are on the episode page. Thanks for listening.
Jamie: Thanks, everyone. Take care.
References
- Crows have brains ‘in the fast lane’
- Treating the Hidden Complexities of ADHD
- Never-Never-Ever Land
- When OCD and ADHD Coexist
- Yes, ADHD Can Trigger Depression & Anxiety
- Why Do ADHD and Mood Disorders So Often Overlap?
- How does bullying affect kids with ADHD?
- How to make Halloween easier for kids with ADHD
- ADHD and eating disorders
- The three definitions of ADHD
- How is special education funded?
- Make the most of parent-teacher conferences
- Four key skills to manage ADHD emotions
- Get to know Madelynn M.