Variation in Autism Diagnosis of Medicaid-Enrolled Children

 In The Politics of Autism, I discuss evaluation, diagnosis, and early intervention.

A release from the Pediatric Academic Societies:

 A new study examined geographic patterns in autism diagnosis by primary care providers among Medicaid-enrolled children in 29 states. The study found that Nevada, South Carolina and Connecticut had the highest rates of autism diagnosis by primary care providers. Findings from the study will be presented at the Pediatric Academic Societies (PAS) 2026 Meeting, taking place April 24-27 in Boston. This study is part of a larger research project, Addressing Structural Disparities in Autism Spectrum Disorder through Analysis of Secondary Data (ASD3), which is funded by the National Institutes of Health.

An autism spectrum disorder (ASD) diagnosis by a medical provider is often required for disability and therapy services access. Given long wait times and limited access to specialty care providers who typically diagnose ASD, some states have expanded primary care provider ASD diagnostic training. Yet little research has examined geographic patterns in primary care providers ASD diagnosis.

"Autism is typically diagnosed by specialists, but various factors such as long wait times can delay this process,” said the ASD3 investigative team. “Primary care providers can offer an additional pathway to early diagnosis, which is important for improving access to needed autism services and supports. Our study looked at Medicaid-enrolled children ages 1-5 in 29 states between 2017-2019, and found that 29% were diagnosed by primary care providers rather than specialists. Rates of autism diagnosis by primary care providers varied significantly between counties, states and regions. We believe that local practice patterns and specialist availability may contribute to this geographic variation."

The sample included 36,263 children across 933 county-sets in 29 states. Overall, 29% of children were diagnosed with ASD by a primary care provider. Regional percentages varied from a median of 20.0% among county-sets in the Midwest to 36.4% in the West. Within-region variation was also high, with interquartile ranges (IQRs) varying from 23.8% in the Midwest to 27.5% in the West. Within-region variation was also high when grouping county-sets by state. For example, the Northeast had both the third highest state (Connecticut, 53.1%) and the third lowest state (New Hampshire, 14.3%) as measured by their median county-set. The neighboring states of South Carolina (60.4%) and Georgia (17.9%), both in the South region, ranked second highest and fifth lowest, respectively. Within-state heterogeneity (IQR) was as low as 6.2% (Connecticut), 9.6% (New Hampshire), and 12.7% (Georgia) and as high as 35.7% (Colorado), 37.6% (Illinois), and 42.3% (Wyoming). Population density showed a slight trend with the densest quartile of county-sets having a median primary care provider diagnosis rate of 24.2%, and 28.6% for the least dense quartile.

More States Reject RFK Jr's Vaccine Lunacy

 In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.  A top antivaxxer is HHS Secretary RFK Jr. He is part of the "Disinformation Dozen." He helped cause a deadly 2019 measles outbreak in Samoa.

He has now hijacked the CDC website -- and the CDC itself.

Liz Szabo at CIDRAP:

A growing number of states are pushing back against sweeping changes to the US childhood vaccine schedule.

The Centers for Disease Control and Prevention (CDC) announced an overhaul of the immunization schedule January 5, paring the number of universally recommended immunizations from 17 to 11.

Since then, at least 17 states have announced that they won’t follow new CDC vaccine schedule: California, Colorado, Connecticut, Hawaii, Illinois, Maryland, Massachusetts, Minnesota, New Hampshire, New Jersey, New York, North Carolina, Oregon, Pennsylvania, Vermont, Washington, and Wisconsin.

Instead, these states say they plan to follow vaccine guidance from the American Academy of Pediatrics (AAP), which continues to recommend immunization plans approved by the CDC prior to the Trump administration.

 ...

Late last week, the AAP and more than 200 health groups sent a letter to Congress urging lawmakers “to conduct swift and robust oversight regarding the abrupt changes to the U.S. childhood vaccine schedule.”

2025: The Year of Autism Disinformation

 In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.  A top antivaxxer is HHS Secretary RFK Jr. He is part of the "Disinformation Dozen." He helped cause a deadly 2019 measles outbreak in Samoa.

He has now hijacked the CDC website -- and the CDC itself.

FactCheck.org includes the Trump administration's comments on autism among the "Whoppers of the Year."

Tylenol and autism: In a late September press conference, Trump endorsed an unproven link between autism and the use of Tylenol, or acetaminophen, during pregnancy. Trump repeatedly told pregnant women, “don’t take Tylenol,” and offered the unsound medical advice to “tough it out.” Recent research indicates there likely isn’t a link. As for Trump’s medical advice, untreated pain or fever during pregnancy can be harmful to both mother and child, and medical groups have long recommended prudent use of the drug — taking acetaminophen when needed in consultation with a doctor.

The administration didn’t point to any new original research on the topic, which has been studied. Some studies have shown an association between using acetaminophen during pregnancy and an increased likelihood of having a child with autism, but no causal link has been established. Recent research indicates there likely isn’t a link. As for Trump’s medical advice, untreated pain or fever during pregnancy can be harmful to both mother and child, and medical groups have long recommended prudent use of the drug — taking acetaminophen when needed in consultation with a doctor.

HHS Secretary Kennedy later falsely claimed that two circumcision-related studies provided evidence that acetaminophen causes autism when given to children. That’s not what the studies found. In November, the Centers for Disease Control and Prevention changed a webpage to say that its previous statement that “vaccines do not cause autism” is “not an evidence-based claim,” echoing Kennedy’s prior misrepresentations of science.

Samantha Putterman at PolitiFact: 

In [Dr. Mona] Amin’s state of Florida, health leaders are seeking to end the rules that require children to come to school vaccinated, at a time when childhood vaccination rates have already been dropping. About 88% of Florida’s kindergartners are up to date on vaccines today, down from about 94% in 2019 — both figures below the 95% rate typically needed to prevent infectious disease outbreaks.

Amin and other pediatricians see these falsehoods manifest in parents’ real-time decisions. About 61% of 1,000 physicians said in an August survey that their patients were influenced by misinformation, and nearly 86% said the amount of misinformation had increased in five years.

More parents are declining the vitamin K shot for their newborns. Administered hours after birth since the 1960s, the shot prevents bleeding into the brain, intestines and other internal organs. Parents’ refusal is leading to rising cases of vitamin K deficiency bleeding in infants.

Measles cases reached a 30-year high in the U.S. in 2025, with nearly 1,800 cases reported in 42 states as of November. Cases of whooping cough are also on the rise. Pediatricians we spoke with said parents of immunocompromised children are asking whether they should send their kids to school at all.

Some parents are hostile. Amin said she’s been screamed at around a dozen times

...

Numbers show pediatric care is under strain, and people in the field say misinformation isn’t helping. With parts of the country already facing critical pediatrician shortages, families struggle to find care and can wait months for appointments in some areas, especially for subspecialty doctors.

Amin teaches residents, and fewer medical school graduates are choosing to be pediatricians. Those already in the field are also leaving traditional practices, citing increasing falsehoods and doctor distrust, among other concerns.

...

Although we found no clear data documenting the rise of doctor influencers, industry groups and researchers acknowledge the phenomenon in articles exploring its benefits, drawbacks and need for quality control. Even artificial intelligence has jumped into the mix, falsely portraying doctors on social media in order to spread falsehoods and market products.

Leucovorin

A number of posts discussed Trump's support for dubious notions about autism.

The history of autism "cures" is a history of dashed hopes and frequent danger.

Julie Steenhuysen at  The Independent:

A drug endorsed by the Donald Trump administration which allegedly treats against a rare disorder that causes autism-like symptoms has triggered a surge in demand from parents, despite a lack of data supporting its use.

More parents in the U.S. are asking for leucovorin, believing it could unlock speech and social connection in their autistic children.

Pediatricians and specialists caution the science on leucovorin in autistic people as the data is limited and does not support widespread use.

...

“My Facebook feed is flooded with parents swearing that leucovorin works,” said Dr. David Mandell, a professor of psychiatry and autism researcher at the University of Pennsylvania.

...

Mandell and other scientists and doctors say Trump’s endorsement, without requiring large, randomized clinical trials, leaves practitioners facing emotional pleas from families while lacking data, guidance or confidence to prescribe the drug responsibly.

Leucovorin is approved to treat chemotherapy side effects but can be prescribed off-label for autism symptoms.

"It puts physicians in a very tough position because they're being asked to prescribe something that is not evidence-based," said Dr. Shafali Jeste, an autism expert and head of pediatrics at UCLA, who does not prescribe leucovorin despite repeated requests.

From the American  Academy of Pediatrics:

Autistic children, adolescents, and young adults are valued members of our communities, and they deserve access to evidence-based care supported by high-quality research. Autism is a complex neurodevelopmental condition with diverse presentations and no single known cause. Current research points to a combination of genetic and environmental influences. For decades, autistic individuals have been subjected to treatments based on unproven theories—some of which caused harm with little to no benefit. As such, any new intervention must be carefully evaluated for both its potential benefits and risks before being widely adopted.

At this time, the American Academy of Pediatrics (AAP) does not recommend the routine use of leucovorin (folinic acid) for autistic children.

Early, small-scale studies have explored its use—particularly among children with documented cerebral folate deficiency—and some findings suggest potential benefit in carefully selected cases. These preliminary results are promising and have laid the groundwork for further investigation.

However, the current evidence base remains too limited to support specific clinical recommendations. Key questions about who may benefit, what dosing and monitoring are appropriate, and what the long-term safety profile looks like have not yet been adequately answered. Larger, well-controlled clinical trials are needed to determine whether leucovorin is a safe and effective option for the broader autistic pediatric population.

The AAP supports research and innovation that improve the quality of life for autistic children and their families. We also recognize the need for any emerging guidance to be grounded in both scientific rigor and respect for neurodiversity.

Pediatricians and prescribing pediatric care providers, including other physicians, physician assistants, and nurse practitioners, are encouraged to engage in shared decision-making with families who inquire about or request leucovorin, providing clear information about current evidence and potential risks. Autistic children, adolescents, and young adults benefit from access to robust supports and services based on their individual needs. Pediatricians and other pediatric care providers should work with families to optimize recommended services and emphasize continuation of well-established supports and therapies that are beneficial to the well-being of the child. The AAP does not have prescribing guidelines for leucovorin for the indication of autism. If a pediatrician or other physician, physician assistant, or nurse practitioner prescribes leucovorin for a pediatric patient, they should prioritize harm mitigation, closely monitor for adverse effects, and support families in navigating complex therapeutic decisions grounded in compassion, transparency, and scientific integrity.

As the evidence base continues to evolve, the AAP remains committed to reviewing new data and updating this guidance accordingly. The AAP supports continued research into all promising therapies that may improve health and developmental outcomes for autistic children, adolescents, and young adults.

 

American Academy of Pediatrics: Healthcare Bill of Rights

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Health problems are prominent among them. 

Carol Weitzman, Cy Nadler, Nathan J. Blum, Marilyn Augustyn, Supporting Access for Everyone Consensus Panel; Health Care for Youth With Neurodevelopmental Disabilities: A Consensus Statement. Pediatrics May 2024; 153 (5): e2023063809. 10.1542/peds.2023-063809

Individuals with a neurodevelopmental disability (NDD) face significant health care barriers, disparities in health outcomes, and high rates of foregone and adverse health care experiences. The Supporting Access for Everyone (SAFE) Initiative was developed to establish principles of health care to improve equity for youth with NDDs through an evidence-informed and consensus-derived process. With the Developmental Behavioral Pediatric Research Network, the SAFE cochairs convened a consensus panel composed of diverse professionals, caregivers, and adults with NDDs who contributed their varied expertise related to SAFE care delivery. A 2-day public forum (attended by consensus panel members) was convened where professionals, community advocates, and adults with NDDs and/or caregivers of individuals with NDDs presented research, clinical strategies, and personal experiences. After this, a 2-day consensus conference was held. Using nominal group technique, the panel derived a consensus statement (CS) on SAFE care, an NDD Health Care Bill of Rights, and Transition Considerations. Ten CSs across 5 topical domains were established: (1) training, (2) communication, (3) access and planning, (4) diversity, equity, inclusion, belonging, and anti-ableism, and (5) policy and structural change. Relevant and representative citations were added when available to support the derived statements. The final CS was approved by all consensus panel members and the Developmental Behavioral Pediatric Research Network steering committee. At the heart of this CS is an affirmation that all people are entitled to health care that is accessible, humane, and effective.

Helping Autistic People Get Vaccines

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all. 

Kathleen Toner at CNN:

Dr. Wendy Ross, a pediatrician, was honored as a CNN Hero in 2014 for her work advocating for people with intellectual or developmental disabilities. Now, as director of Jefferson Health's Center for Autism and Neurodiversity in Philadelphia, she's making it easier for them to get vaccinated.

"A lot of them get easily overwhelmed in crowds. They have a lot of sensory issues, they tend to be very anxious in new experiences," Ross said. "We reduce that stress by having a very low-stimulus environment ... We just sort of slow down the pace and make it more relaxed."

For those who are neurodiverse, Ross' sensory-friendly clinic is a welcome refuge. There's more space between appointments, which means less waiting in line, and the office has special seating, fidgets and even sunglasses available to help people stay calm. Trained vaccinators have strategies to help the process go smoothly.

But these accommodations aren't just about comfort. Ross conducted a study that showed that people with intellectual disabilities face a greater risk of Covid-19.

"What we discovered was that having an intellectual disability was the number one risk factor for getting Covid and the second risk factor -- only below age -- for dying from Covid," she said. "This is an invisible population and our goal is to make them visible and cared for adequately."

Ross has resources available on her office's website to help neurodiverse individuals prepare for vaccinations and other Covid-related issues. She also asked a focus group of young adults with intellectual disabilities what people vaccinating them should know, and she later turned this into a video PSA with the Special Olympics.

Dawn Powell had concerns about getting her 16-year-old son Anthony vaccinated, because in addition to having autism he had a lot of anxiety about getting a shot. Ross and her staff had to try a few times before they were successful, but Powell was grateful for their efforts.
"I didn't think it was going to happen ... but they did it," she said. "As a mom, it means everything ... When we go to regular clinics, they kind of give up on the first try."

Ross says that a number of people have told her they would not have been able to get their children vaccinated anywhere else.

"Getting the vaccine to this population absolutely is saving lives," she said. "I just feel that everyone matters and has value and that everyone should be included."

Bogus Tests

In The Politics of Autism, I write:

The conventional wisdom is that any kind of treatment is likely to be less effective as the child gets older, so parents of autistic children usually believe that they are working against the clock. They will not be satisfied with the ambiguities surrounding ABA, nor will they want to wait for some future research finding that might slightly increase its effectiveness. They want results now. Because there are no scientifically-validated drugs for the core symptoms of autism, they look outside the boundaries of mainstream medicine and FDA approval. Studies have found that anywhere from 28 to 54 percent of autistic children receive “complementary and alternative medicine” (CAM), and these numbers probably understate CAM usage

Quacks usually recommend various kinds of tests and analyses.

From the American Academy of Pediatrics Council on Environmental Health:

Five Things Physicians and Patients Should Question

1 Do not routinely test urine for metals and minerals in children with autistic behaviors. Toxicologic exposures have not been conclusively associated with the development of autistic behaviors in children. Testing for metals and minerals may be harmful if treatment is guided on the basis of these results.

Thimerosol or ethylmercury has been used as a preservative in multidose vaccine vials and have been blamed for the increase in autism rates over the past 2 decades. However, studies have failed to show a causative link between environmental exposures and the development of these symptoms. As symptoms of autism occur early in childhood and, possibly, months to years after any potential exposure may have resulted in neurotoxicity, the likelihood of continued presence of such toxicant is low. Parents, however, may be desperate for answers and seek out alternative sources for information and receive advice to obtain laboratory analysis for minerals and metals as causative agents without insurance reimbursement. Finding an abnormal result has led to ill-advised treatments and death in some patients.

2 Do not order hair analyses for “environmental toxins” in children with behavioral or developmental disorders, including autism.

The analysis of hair for a broad array of elements and chemicals as a way to diagnose the cause of childhood diseases such as autistic spectrum disorder has no scientific basis. Such assays may not be reliable: hair collection is not precise and it is a heterogeneous matrix; chemicals in hair may not be distributed evenly from the root up the shaft, the assays used may not be accurate technically, and hair can easily be contaminated by external residues of dust, shampoos, conditioners, or other hair treatments. Reports of finding of various metals, etc, can create a severe anxiety in the families requiring further testing by other means. Historically, testing by standard means fail to verify the apparent exposure reported by hair analysis.

3 Do not order mold sensitivity testing on patients without clear allergy or asthma symptoms (particularly those with chronic fatigue, arthralgia, cognitive impairments, and affective disorders). For those with allergy or asthma symptoms who have not responded to environmental interventions to reduce allergen exposures, mold sensitivity testing may be performed by an allergist or pulmonologist, but should not routinely be performed in the primary care setting.

Mold can cause sensitization and clinical disease. Skin prick and in vitro tests can effectively identify patients who are sensitized to molds, although this does not always translate to clinical disease. Results of these tests must be interpreted in the context of the patient’s clinical presentation.

Exposure to dampness and mold can increase the risk of developing asthma in children regardless of their atopic status and increased symptoms of asthma and rhinitis in individuals who already have these conditions. Interventional studies have found that a multifaceted series of interventions aimed at reducing indoor moisture, removing contaminated building materials, and reducing reservoirs (including carpeting and dust) can reduce exposure sufficiently to reduce symptoms in affected individuals. This implies a causal relationship between exposure to fungi and morbidity and provides a rationale for environmental interventions to reduce it.

4 Do not order “chelation challenge” urinary analyses for children with suspected lead poisoning.

The “chelation challenge” was formerly used to assess whether a child had a significant body burden of lead, or “lead poisoning,” and whether formal chelation would result in significant clearance of lead. Evidence exists that suggests that the chelation challenge has no better prognostic value than the standard blood lead level. Further, there is some evidence that the chelation challenge may in fact be potentially dangerous. In summary, chelation challenge has no clinical utility in the treatment of childhood lead poisoning today

5 With the exception of certain heavy metals (eg, lead), do not routinely use measurements of environmental chemicals in a person’s blood or urine to make clinical decisions.

It is virtually impossible for people not to come into contact with hundreds of chemicals each day—whether those chemicals are in our food, air, water, soil, dust, or the products we use. And it is even more difficult for people to know whether those chemicals are harmful to their health or not. Presence does not mean toxicity.

The measurement of an environmental chemical in a person’s blood or urine does not by itself mean that the chemical causes disease. Advances in analytical methods allow us to measure low levels of environmental chemicals in people, but separate studies of varying exposure levels and health effects are needed to determine whether such blood or urine levels result in disease. These studies must also consider other factors such as duration of exposure. For some environmental chemicals, such as lead, research studies have given us a good understanding of the health risks associated with different blood lead levels. For many environmental chemicals (eg, phthalates, polychlorobiphenyls) more research is needed to assess health risks from different blood or urine levels. Thus, just because a chemical is found to be in the body does not mean that harm will occur. Moreover, these measurements are not helpful to guide clinical intervention or treatment. Pediatric Environmental Health Specialty Units (www.pehsu.org) can provide additional information about indications, measurement, and interpretation of environmental chemicals in blood or urine, including lead and other heavy metals.

Oregon Suspends License of Antivax Doctor

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

Rachel Monahan at Willamette Week:

Dr. Paul Thomas, a prominent anti-vaccine pediatrician in Oregon, had his license suspended Dec. 3 on an emergency basis after the state's medical board found evidence he had violated standard medical practices related to vaccines.

The Oregon Medical Board took the unusual step after reviewing evidence that alleged Thomas guided his patients away from getting the standard course of childhood vaccinations—and that patients suffered vaccine-preventable diseases possibly as a result.

"The Board has determined from the evidence available at this time that Licensee's continued practice of medicine would pose an immediate danger to the public and to his patients," the board's order of emergency suspension states. 'Therefore, it is necessary to immediately suspend his license to practice medicine. To do otherwise would subject Licensee's patients to the serious risk of harm while this case remains under investigation."

Nearly two years ago, Thomas, who runs a large clinic in Beaverton, was the subject of a WW cover story ("Alt-Vaxx," March 20, 2019). The initial complaint listed by the medical board matches the details recounted in the WW story: A mother requested vaccines that Thomas did not have on hand, and he tried to dissuade her from getting her child vaccinated.

Dr. Thomas "asked her how awful she would feel if Patient A [her child] got autism and she could have prevented it," the order states.

But the medical board also reviewed troubling new allegations that Thomas appeared to push parents not to accept vaccines, including the rotavirus vaccine, and that several of his unvaccinated patients were hospitalized after not getting the vaccine.

That included 10-month-old twins who "were suffering from severe dehydration and serum electrolyte abnormalities and required five days of hospitalization (April 25-30, 2019)," according to the medical board order.

Generosity of Mandates and the Autism Workforce

The Politics of Autism includes an extensive discussion of insurance and explains the limits of insurance mandates:

There are no exact figures available, but suppose that we take the total number of autistic people and subtract the following:

• Those in states without mandates;
• Those who live in states with mandates but are under exempt, self-funded plans;
• Those with individual and small group policies to which post-2011 mandates do not apply, and
• Those who have already gone over the various limits and caps.

Ryan K. McBain and colleagues have an article at Autism titled "Generosity of State Insurance Mandates and Growth in the Workforce for Autism Spectrum Disorder."

The lay abstract:

To improve access to health services for children with autism spectrum disorder, US states have passed laws requiring health insurers to cover autism-related care, commonly known as state insurance mandates. However, the features of mandates differ across states, with some state laws containing very generous provisions and others containing very restrictive provisions such as whether the mandates include children aged above 12 years, whether there is a limit on spending, and whether there are restrictions on the types of services covered. This study examined the relationship between generosity of mandates and growth in the health workforce between 2003 and 2017, a period during which 44 states passed mandates. We found that states that enacted more generous mandates experienced significantly more growth in board-certified behavioral analysts who provide behavioral therapy as well as more growth in child psychiatrists. We did not find differences in the growth of pediatricians, which is a less specialized segment of the workforce. Our findings were consistent across eight different mandate features and suggest that the content of legislation may be as important as whether or not legislation has been passed in terms of encouraging growth in the supply of services for children with autism spectrum disorder.

How to Overcome Antivax Sentiment

 In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing disease to spread.  Trump has helped spread misinformation.

Olga Khazan at The Atlantic:

Foremost among the strategies researchers have devised to break through misgivings about vaccination is, essentially, scaring people into doing it. In 2015, Zachary Horne, a psychology professor at Arizona State University, divided 315 participants into three groups. The first group read a story about a child who contracted measles; looked at a picture of a child with measles, mumps, or rubella; and read warnings about the importance of vaccination. The second simply read statistics showing there is no link between vaccination and autism. The third read about an unrelated topic. The group exposed to the vivid anecdotes were more likely to change their attitude toward vaccines than the other two. Vaccine skeptics often tell frightening personal stories of injury; Horne did the same thing, but for diseases.
...

But other experts say adjusting attitudes is a fruitless exercise. Some evidence shows that giving people —including the vaccine-hesitant—correct information actually causes them to double down on their resistance, in a psychological concept known as the “backfire effect.” In a study similar to Horne’s, another group of researchers found that images of sick children only worsened parents’ misperceptions about the vaccine-autism link, and did not boost their intent to vaccinate their children.

Instead, this camp endorses a strategy called “direct behavior change.” Pediatricians might, for example, simply tell parents which vaccinations they’ll be performing during their child’s appointment, rather than ask them whether they’d like to vaccinate. According to research, parents are much more likely to avoid vaccinating if the pediatrician says something like, “What do you want to do about shots?” as opposed to, “Well, we have to do some shots.”

The Antivax Mind

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.

At Salon, Jonathan Berman writes of a composite anti-vaxxer:

When Jenny takes the baby to its checkup with the pediatrician, Dr. Smith brings up its vaccine schedule. Jenny refuses and has come armed with information she's pulled from her sources on the internet and in books. She insists that there's mercury in vaccines that causes autism. She lists chemicals with long names that are in vaccines. Dr. Smith is taken aback. She agrees to delay but will try to persuade Jenny again at the next office visit. At the next office visit, Dr. Smith has come prepared with responses to the anti-vaccine claims made by her patient. However, for every answer she can provide, Jenny has a rejoinder. The pediatrician is again delayed in vaccinating. Jenny feels ambushed by Dr. Smith. "I've done my research," she says. "As a mother, I know what's best for my own child, better than anyone else."

Jim and Jenny feel they've done their best for their child. They identified a potential danger, did research, and avoided that danger, which is the duty of good parents, after all. When Dr. Smith tried to convince them with facts and data alone, she failed because Jim and Jenny knew they shouldn't just trust whatever the pediatrician says. Long gone are the days of paternalism when the doctor knows best and a patient should simply listen and do what they're told. Jim and Jenny are active in their own health care and that of their children.

What could Dr. Smith have done to convince Jenny to go ahead with vaccination? What can municipalities, neighbors, and friends do to help Jim and Jenny make better choices? Dr. Smith was operating from an information-deficit model. She believed that Jim and Jenny simply didn't have enough information. However, Jim and Jenny have more than enough information. It's just bad information. The bad information came from people whom Jim and Jenny trusted, friends and family. The good information came from an authority figure.

Imagine how this scenario would have played out if someone on the Measlton Moms Facebook group had stepped forward after that initial post to say "I had all three vaccinated, and they're doing great." Or if there had been another post with a picture of a smiling child with the caption "She just got her 24-month booster shots!" Perhaps if the sources that presented themselves when Jim and Jenny set out to do research had been better, they might have stopped themselves. Jim may have been directed to New Scientist, Scientific American, or another mostly reliable source, rather than to InfoWars and Natural News. Amazon's algorithm may have directed Jenny to books by Paul Offit, rather than to books by vaccine denialists.

Progress on Screening

In The Politics of Autism, I discuss evaluation and diagnosis of young children.  Screening is an important part of the process.

Paul S. Carbone and colleagues have an article at Pediatrics titled "Primary Care Autism Screening and Later Autism Diagnosis"

From the abstract:

Of 36 233 toddlers, 73% were screened and 1.4% were later diagnosed with ASD. Hispanic children were less likely to be screened (adjusted prevalence ratio [APR]: 0.95, 95% confidence interval [CI]: 0.92–0.98), and family physicians were less likely to screen (APR: 0.12, 95% CI: 0.09–0.15). Compared with unscreened children, screen-positive children were more likely to be diagnosed with ASD (APR: 10.3, 95% CI: 7.6–14.1) and were diagnosed younger (38.5 vs 48.5 months, P < .001). The M-CHAT’s sensitivity for ASD diagnosis was 33.1%, and the positive predictive value was 17.8%. Providers routinely omitted the M-CHAT follow-up interview and had uneven referral patterns.

From the article:

Previous estimates of ASD screening have varied significantly (between 17% and 81%) and relied on physician report of “usual practice.”6,16 Our study, along with 2 recent studies, adds to understanding of ASD screening because estimates are based on data from actual visits rather than physician recall and indicates that, although ASD screening is far from universal, a high proportion of children are screened at least once.10,11
With our study, we provide important insight into disparities in ASD screening; researchers in previous studies suggested that ASD screening in primary care reduces racial and ethnic disparities in ASD identification and age of diagnosis.17 Hispanic children in our cohort were less likely to be screened compared with non-Hispanic white children, a finding supported by one previous study.11 We also found family physicians rarely administered ASD screening tools. The American Academy of Family Physicians does not recommend universal ASD screening, which may explain differences in screening between pediatricians and family physicians.18 No previous studies have had estimated rates of ASD screening among family physicians, although researchers of one qualitative study of a small group of family physicians found that, rather than screening, participants relied on developmental surveillance to identify children with ASD.19 Given that family physicians provide 16% to 21% of pediatric care, this new finding uncovers an opportunity to further increase ASD screening rates in the United States.20

...
Our results suggest progress toward universal ASD screening in primary care practices. Still, only half of children in our study were screened at both 18- and 24-month visits, suggesting further work to be done to encourage providers to complete screens as recommended, with more efforts to screen Hispanic children. Further advocacy and education are needed to encourage family physicians to screen for ASD. More resources are needed for implementing ASD screening at the practice and health care system level, with particular attention to administering ASD screening tools with fidelity, prompt referral of children who are found to be at-risk, and increasing the availability of ASD diagnostic providers to facilitate prompt ASD evaluations.

American Academy of Pediatrics on Disability Discrimination in Organ Transplants

In The Politics of Autism, I discuss the  civil rights of people with autism and other disabilities.   A number of posts have provided details on discrimination in organ transplantation.

From the American Academy of Pediatrics:

AAP: Scarcity of transplant organs does not justify excluding children with disabilities
Mindy B. Statter, M.D., M.B.E., FACS, FAAP and Garey H. Noritz, M.D., FACP, FAAP
April 20, 2020 AAP Policy

The demand for transplantable solid organs far exceeds the supply of deceased donor organs. Like the debate as to which patients will receive lifesaving interventions during the coronavirus disease 19 (COVID-19) pandemic, individual transplant programs must make eligibility determinations based on the principle of utilitarianism — doing the greatest amount of good for the greatest number of people.

Given the scarcity of solid organs for transplantation, allocation to those most likely to gain the most benefit takes into consideration both medical and psychosocial factors. Children with intellectual and developmental disabilities (IDDs) historically have been excluded as potential recipients of organ transplants.

A new AAP policy states that denying transplantation to people with disabilities on the basis of their disability and supposed lower quality of life may constitute illegal and unjustified discrimination.

The policy, Children with Intellectual and Developmental Disabilities as Organ Transplantation Recipients from the AAP Committee on Bioethics and Council on Children with Disabilities, is available at https://pediatrics.aappublications.org/content/early/2020/04/16/peds.2020-0625 and will be published in the May issue of Pediatrics.

Facts, ethical issues

The decision to initiate transplant must include consideration of both the individual’s quality of life with the diseased organ and the potentially improved quality with the transplanted organ.

The notion that children with disabilities have a lower quality of life than children with typical development is both incorrect and ethically problematic in decisions regarding organ transplantation (Albrecht GL, Devlieger PJ. Soc Sci Med. 1999;48:977-988).
Transplant success rates in patients with disabilities are as good as in the general population, so care must be taken to ensure that medical and psychosocial factors that may affect the transplant outcome are not confused with judgments of an individual’s social worth (Galante NZ, et al. Nephrol Dial Transplant. 2010;25:2753-2757).

The presence of an IDD is relevant but should not be the determinative factor.
Children without disabilities have no more claims to scarce resources, such as organ transplants, than do children with disabilities. In adhering to the ethical principles of respect for persons, utility and justice, children with IDDs should not be excluded from the potential pool of recipients and should be referred for evaluation as recipients of organ transplants, according to the policy statement. Deceased children with disabilities can be organ donors and contribute to the supply of solid organs, so it would be unfair to categorically exclude them as organ transplant recipients.

Recommendations

Patients should not be excluded from consideration for solid organ transplant solely on the basis of an intellectual or developmental disability.

Transplantation programs should standardize the definition and assessment of intellectual disability so that transplant decisions can be individualized, equitable and transparent. The transplant team should consider the individual’s cognitive and adaptive skills. There should be concordance among the respective solid organ transplant programs within an institution in defining IDD to avoid biases.

The transplant evaluation is a collaborative process that should occur in person rather than by medical record review. It should include caregivers such as therapists and developmental specialists who can demonstrate the patient’s degree of function, as well as professionals with expertise in the evaluation and management of individuals with intellectual disability.

Drs. Statter and Noritz are lead authors of the policy statement. Dr. Statter is a member of the AAP Committee on Bioethics. Dr. Noritz is a member of the Council on Children with Disabilities Executive Committee.

Screening Up, but Far from Universal

In The Politics of Autism, I discuss evaluation and diagnosis of young children.  Screening is an important part of the process.

Paul Lipkin and colleagues have an article at Pediatrics titled:  "Trends in Pediatricians’ Developmental Screening: 2002–2016."  The abstract:

BACKGROUND: Current guidelines from the American Academy of Pediatrics recommend screening children for developmental problems by using a standardized screening tool and referring at-risk patients to early intervention (EI) or subspecialists. Adoption of guidelines has been gradual, with research showing many children still not being screened and referred.

METHODS: We analyzed American Academy of Pediatrics Periodic Survey data from 2002 (response rate = 58%; N = 562), 2009 (response rate = 57%; N = 532), and 2016 (response rate = 47%, N = 469). Surveys included items on pediatricians’ knowledge, attitudes, and practices regarding screening and referring children for developmental problems. We used descriptive statistics and a multivariable logistic regression model to examine trends in screening and referral practices and attitudes.

RESULTS: Pediatricians’ reported use of developmental screening tools increased from 21% in 2002 to 63% in 2016 (P < .001). In 2016, on average pediatricians reported referring 59% of their at-risk patients to EI, up from 41% in 2002 (P < .001), and pediatricians in 2016 were more likely than in 2002 to report being “very likely” to refer a patient with global developmental delay, milestone loss, language delay, sensory impairment, motor delays, and family concern to EI.

CONCLUSIONS: Pediatricians’ reported use of a standardized developmental screening tool has tripled from 2002 to 2016, and more pediatricians are self-reporting making referrals for children with concerns in developmental screening. To sustain this progress, additional efforts are needed to enhance referral systems, improve EI programs, and provide better tracking of child outcomes.

American Academy of Pediatrics Recommends Universal Screening

In The Politics of Autism, I discuss evaluation and diagnosis of young children.  Screening is an important part of the process.

From the American Academy of Pediatrics:

The American Academy of Pediatrics (AAP) has updated its clinical recommendations on autism spectrum disorder for the first time in 12 years, analyzing the latest research on the neurodevelopmental disorder that affects an estimated 1 in every 59 children.

“Identification, Evaluation, and Management of Children with Autism Spectrum Disorder,” a clinical report published in the January 2020 Pediatrics, emphasizes the importance of early identification of autism, which can be diagnosed as young as 18 months of age. The report, along with an executive summary (both published online Dec. 16), reflects significant changes in the field since the previous recommendations were published in 2007.

In that time, research examining the possible causes of autism spectrum disorder has progressed rapidly, with increasing understanding of the interplay between genetic make-up and environment.

Physicians now have a greater understanding of the medical and behavioral conditions that often co-occur with autism, and the body of research supporting evidence-based interventions has grown substantially. The updated clinical report reflects this new evidence and offers recommendations to physicians in identifying and managing the disorder, and in treating common co-occurring conditions.

Because early identification is so important, the AAP continues to recommend developmental and behavioral surveillance of children at every well child visit, developmental screening at 9-, 18-, and 30-month visits, as well as specific screening for autism spectrum disorder at ages 18 and 24 months.

“We know that the earlier we can start therapies for children who show signs of developmental delays, the better likelihood of positive outcomes,” said Susan L. Hyman, MD, FAAP. lead author of the report, which was authored by the AAP Council on Children with Disabilities and the AAP Section on Developmental and Behavioral Pediatrics.

“There is no reason to wait for a diagnosis of autism before starting some services, such as speech or behavioral therapies,” said Dr. Hyman, a developmental and behavioral pediatrician at the University of Rochester and Golisano Children’s Hospital. “Interventions work best when they are early, when they are intense, and when they involve the family.”

More than 5 million Americans are affected by autism spectrum disorder, and its prevalence has increased to 1 in 59 children, an increase from 1 in 155 in 2007.The disorder is characterized by deficits in social communication and interaction and restrictive repetitive patterns of behavior.

Many individuals with autism have co-occurring conditions that can and should be treated, according to the AAP. This includes intellectual disability, language disorders, attention-deficit/hyperactivity disorder and anxiety, and disorders of sleep, feeding, gastrointestinal symptoms and seizures. The AAP report states that 40% of individuals with autism spectrum disorder have an intellectual disability. As many as 40% to 60% of school-aged children and adults with autism are reported to have anxiety disorders.

The AAP supports the use of behavioral interventions for skill building, based on the most recent research, and noted the combinations of therapies and approaches that include parents that are increasingly used in community settings.

“Families play a key role in treatment and advocacy for a child with autism spectrum disorder,” said Susan E. Levy, MD, MPH, FAAP, a co-author of the report, developmental and behavioral pediatrician at Children's Hospital of Philadelphia and a professor of pediatrics at the Perelman School of Medicine at the University of Pennsylvania.

“They also need the support of the professional team, the clinicians, educators and therapists who are working alongside them.”

The AAP recommends that pediatricians:

• Conduct developmental and behavioral surveillance during all well visits with children, developmental screening at the 9-, 18-, and 30-month visits, and standardized screening of patients for autism spectrum disorder at 18 and 24 months old.
• Help ensure that children with autism spectrum disorder are provided with evidence-based services to address social, academic and behavioral needs at home and school, with access to appropriate pediatric and mental health care, respite services and leisure activities.
• Engage with families and youth to plan a transition to the adult system of medical and behavioral care.
• Inform patients and families about the evidence for interventions, refer families for possible participation in clinical research and refer families to support organizations.

While research has led to more knowledge about autism spectrum disorder, the AAP acknowledges that much work remains to be done.

“There need to be more equitable and affordable therapies for all families, from the time of diagnosis through employment and adult life,” Dr. Hyman said. “All children deserve options and hope for productive, satisfying lives.”