"Profound Autism"

From the preface to The Politics of Autism.

A major theme of this book is that just about everything concerning autism is subject to argument. There is not even any consensus on what one should call people who have autism and other disabilities. “In the autism community, many self-advocates and their allies prefer terms such as `Autistic,’ `Autistic person,’ or `Autistic individual’ because we understand autism as an inherent part of an individual’s identity,” writes blogger Lydia Brown.[i] Other writers prefer “people-first” language (e.g., “persons with autism”) since it puts the persons ahead of the disability and describes what they have, not who they are.[ii] For the sake of stylistic variety, this book uses both kinds of language, even though this approach will satisfy neither side. I can only say that I mean no offense.

Amy S.F. Lutz at Psychology Today:

Yesterday, the Lancet Commission on the future of care and clinical research on autism — a group of 32 researchers, clinicians, family members, and self-advocates from around the world — released a comprehensive 64-page report detailing changes that should be made over the next five years to improve the quality of life of autistic people and their families.

Besides a common-sense call for individualized, incrementalized, evidence-based interventions, one of the Commission’s key recommendations is to carve out the most impaired section of the spectrum and give it its own label of “profound autism,” which would include autistic individuals who also have significant intellectual disability (IQ below 50), minimal or no language, and who require round-the-clock supervision and assistance with activities of daily living. The Commission expresses “hope that [the introduction of “profound autism”] will spur both the clinical and research global communities to prioritise the needs of this vulnerable and underserved group of autistic individuals.”

This move represents just the most recent example of a growing dissatisfaction with the monolithic diagnosis of Autism Spectrum Disorder that was introduced in DSM-5 eight years ago in place of more narrowly defined categories such as Asperger Syndrome, Autistic Disorder, and Pervasive Developmental Disability, Not Otherwise Specified (PDD-NOS). Last month, the National Council on Severe Autism (NCSA) — on whose board I serve — issued a position statement calling for a “distinct, stand-alone diagnostic category” for the most impaired, and the use of “autisms” rather than “autism” to emphasize the extraordinarily diverse presentations of the disorder has been popular for several years at the most prominent autism conferences, such as the International Society for Autism Research (INSAR).

ASAN criticizes the term:

Self-advocates with intellectual disabilities and AAC users have long spoken out against the harm caused by functioning labels like “severe autism” or “low-functioning” autism, as have parents of autistic people with the most significant support needs. “Profound autism” is just an attempt to rebrand the same harmful notion. The reality is that autistic people, just like people with Down Syndrome or Cerebral Palsy, have a wide range of abilities and support needs, for lots of different reasons. The Lancet Commission conflates needing 24/7 support with having a measured IQ of 50 or below or being nonspeaking, but this is a harmful oversimplification — for example, there are many autistic people who speak or who have higher IQs but who require around-the-clock services, and there are autistic AAC users who live independently. We also know that IQ tests are notoriously unreliable for autistic people, particularly nonspeaking autistics. Nor is it clear why the presence of co-occurring disabilities like intellectual disability or speech apraxia should result in a different label, when co-occurring disabilities are common in autistic people and already accounted for by the DSM.

Autistic people need and deserve better services, especially those of us with the highest needs — but the “profound autism” label doesn’t help. “Profound autism” doesn’t give us any actionable information about why a person needs support or what support they need. It doesn’t tell us if a person has speech apraxia or complex medical needs, or if the person needs access to AAC or specific mental health supports. It also doesn’t reflect what we know about people with significant developmental disabilities generally, which is that high expectations and inclusive services benefit everyone and we can’t predict what someone can achieve with the right support.

 

Autistic Actors

In The Politics of Autism, I discuss depictions of ASD in popular culture.  There are now efforts to improve the representation of autistic people in the performing arts. 

Actors for Autism:

Actionplay:

Levi Harris:

Anti-Vax, Anti-Democracy

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.

Antivaxxers are sometimes violent, often abusive, and always wrong.  

Unfortunately, Republican politicians and conservative media figures are increasingly joining up with the anti-vaxxers.  There is a great deal of overlap between MAGA World and the antivax movement.

 Eric Michael Garcia at MSNBC:

As FiveThirtyEight noted this year, conservatives have long been resistant to mandates for vaccinations. What has changed slightly, notes science journalist Tara Haelle, is their language. After focusing largely on arguments about “toxins,” the anti-vaccine movement is now more focused on arguments about “choice,” a broader rallying cry for the pro-freedom red state crowd. Today, conservatives constantly invoke the language of “choice.” Indeed, conservative Republicans brought the country to the brink of a government shutdown just a few days ago over vaccine mandates.

Perhaps most frightening is the way the anti-vaxx movement has melded with true anti-democratic extremists. About a block away from the Capitol on Jan. 6, anti-vaccine activists held a “MAGA Freedom Rally” that blended anti-vaccine claptrap with lies about the integrity of the 2020 presidential election. Del Bigtree, who produced a documentary lionizing disgraced former doctor Andrew Wakefield and his now-retracted study linking the measles, mumps and rubella vaccine to autism, was a featured speaker. During the rally, Bigtree compared Fauci to voting machines, claiming Americans could trust neither. It’s possible that the more cynical anti-vaxxers see election fraud as their next pivot (and meal ticket).

Antivax Ambush

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.

Antivaxxers are sometimes violent, often abusive, and always wrong.

Lara Korte at The Sacramento Bee:

The head of the California Medical Board says members of an anti-vaccine group known to spread misinformation about COVID-19 treatments targeted her at her home and workplace in Walnut Creek on Monday. Kristina Lawson, president of the state agency that licenses and disciplines medical doctors, first shared the “terrifying experience” on Twitter Wednesday.

... 

 Lawson, through a spokesman, told The Sacramento Bee that the men identified themselves as belonging to a group called America’s Frontline Doctors, a right-wing political organization known to oppose COVID-19 vaccines and offer unproven treatments for those infected with the virus.

Instead, they ambushed me in a dark parking garage when they suspected I would be alone. The private investigator traveling with them told law enforcement they are producing a video about me that will include footage of my house and neighborhood, and, of course, me. /7

— Kristina Lawson (@kdlaw) December 8, 2021

 

From State Senator Richard Pan:

Dr. Richard Pan, pediatrician and state senator representing the Sacramento region, made the following statement regarding the stalking and harassment of Kristina Lawson, President of the California Medical Board by anti-vaccine extremists:

“As a physician, State Senator and Chair of the California Senate Committee on Health, I strongly condemn the stalking and harassment of Kristina Lawson, President of the California Medical Board. This harassment is part of a pattern of intimidating people from doing their jobs and protecting the public. Anti-vaccine extremists and others who peddle disinformation know they cannot succeed with facts and science, so they resort to personal attacks. This behavior is not only a threat to the public servants, but a danger to the enter public. We will all be harmed if public servants are bullied for protecting us. The perpetrators of these threats need to be held responsible and I implore law enforcement, to investigate and hold these extremists accountable for any laws that have been broken.”

And yes, there is a link to broader right-wing violence. Cheryl Clark at MedPage Today:

Jason Overman, a publicist who Lawson confirmed was representing her, said Lawson told him that the group "announced themselves to her -- and had logos on their jackets and microphones -- as America's Frontline Doctors."

That group is led by Simone Gold, MD, a Los Angeles-based physician with a California license to practice medicine, although there is no information that she was involved in Monday's incident with Lawson.

Gold, who had practiced as an emergency room physician, has appeared in numerous public forums advocating that people avoid getting vaccinated against COVID-19, has opposed lockdowns to prevent spread of the virus, and persuaded patients to instead purchase drugs shown to be ineffective or unproven.

Gold told the Washington Post that she has been fired from two hospital jobs since participating with other physicians in a July 2020 news conference at the Supreme Court, where she spread misinformation about government efforts to contain the virus.

She also was arrested for her role in storming the U.S. Capitol on January 6, where she was caught on video making a speech to rioters inside the building.

Maryland County Settles Case on Seclusion and Restraint

In The Politics of Autism, I discuss the use of restraint and seclusion.  Many posts have mentioned these techniques, both in schools and facilities for people with disabilities.

A December 1 release from the US Department of Justice:

The Department of Justice’s Civil Rights Division and the U.S. Attorney’s Office for the District of Maryland announced today a settlement agreement with the Frederick County Public School District in Maryland to address the discriminatory use of seclusion and restraint against students with disabilities.

The department’s investigation found that the school district unnecessarily and repeatedly secluded and restrained students as young as five years old in violation of Title II of the Americans with Disabilities Act (ADA). Under the settlement, Frederick County will end the use of seclusion, overhaul its restraint practices, and train staff on use of appropriate behavioral interventions for students with disabilities.

The investigation, opened in October 2020, revealed thousands of incidents of seclusion and restraint in just two and a half school years. Although students with disabilities make up only 10.8% of students enrolled in the district, every single student the district secluded was a student with disabilities, as were 99% — all but one — of the students the district restrained. The district routinely resorted to seclusion and restraint in non-emergency situations instead of using appropriate behavior interventions tailored to individual students’ needs. The investigation found that these practices often intensified students’ distress, with some students engaging in self-harm and showing other signs of trauma while in seclusion.

...

The school district cooperated fully throughout the investigation. Under the settlement agreement, the school district will take proactive steps to ensure that its practices do not discriminate against students with disabilities. The district will, among other things:

• prohibit the use of seclusion;
• report all instances of restraint and evaluate whether they were justified;
• designate trained staff to collect and analyze restraint data and oversee the creation of appropriate behavior intervention plans;
• deliver appropriate training and resources to help schools implement the agreement;
• design and implement procedures for handling complaints about restraint;
• offer counseling and compensatory education services to students with disabilities who were subjected to the district’s discriminatory practices; and
• hire an administrator to supervise school-based staff and ensure the district’s compliance with the agreement and Title II of the ADA.

Cory Smith at WRC-TV:

“When you look at those numbers, you can’t help but think, this is not just an issue, this is a civil rights issue,” said Guy Stephens, founder of the Alliance Against Seclusion and Restraint.

Stephens started the organization after his son, who has autism, was secluded and restrained in Calvert County, Maryland. The practices cause trauma and don’t make classrooms safer, he said.

“The more a kid is traumatized, the less they feel safe in school, the more likely they are to exhibit distressed behaviors. So you create this cycle where you’re targeting the same kid over and over again,” Stephens said

Lancet Commission on Care and Research

In The Politics of Autism, I discuss evaluation and diagnosis. I also discuss international perspectives. Comparative public policy on autism services and research needs far more study.

Recommendations from  the Lancet Commission on the future of care and clinical research in autism

Although autism affects at least 78 million people worldwide, formal documentation of their existence is limited to a subset of countries. Formal documentation through governmental health-care, education, and social care systems for people with autism would be a first step in determining the needs and addressing the potential inequalities faced by these individuals.

Autism is a complex but common neurodevelopmental disorder that requires personalised assessments and intervention strategies. A stepped care and personalised health model to assess and direct interventions can increase the effectiveness of approaches. Governments and health-care systems must recognise the need for integration across systems to support the needs of autistic individuals and their families across development.

Autism is a neurodevelopmental disorder that changes with and affects development; a single assessment or a single treatment is never sufficient. Follow-up assessments and personalised treatment plans that focus on individual strengths, difficulties, and changes in contexts and expectations across the life span are needed.

Interventions for autism and for co-occurring conditions should begin as soon as signs are noticed and then monitored with more comprehensive assessment once begun. No one should wait for months or years to start treatment because they are unable to find an appropriate assessment. However, within a reasonable period of time (depending on age and context), assessments do need to be supported and undertaken to identify personalised needs.

Focused research strategies at the government or institutional level should be prioritised with an emphasis on clinical practice that can increase the understanding of what interventions work, for whom, when, how, with what general outcomes, and at what cost. National and international infrastructures should be developed to help such projects to move beyond single investigator-led (albeit multisite) studies to more integrated attempts that take into account individual differences within autism. Infrastructures should also support studies that build on each other and provide evidence for broader community implementation and effectiveness, rather than simply showing that an intervention is better than a waiting list or treatment as usual.

Governments and services should monitor access to provision to ensure that underserved groups, including those who are minimally verbal, girls and women, minority ethnic groups, from socially disadvantaged backgrounds, or with severe co-occurring conditions, have equitable access to appropriate services.

Bob Dole and the GOP

In The Politics of Autism, I discuss the civil rights of people with autism and other disabilities.  Republicans, including the recently-deceased Bob Dole, were once at the forefront of disability rights.  Now they are not.  Unfortunately, Republican politicians and conservative media figures are increasingly joining up with the anti-vaxxers.  There is a great deal of overlap between MAGA World and the antivax movement.

Eric Michael Garcia at TNR:

[Bob] Dole’s passing on Sunday has allowed Washington, D.C. to engage in one of its favorite activities—reminiscing on the days when bipartisanship reigned; the ADA looms large as a prime example. But it also forces a round of uncomfortable questions, regarding the way the Republican Party has strayed from Dole’s heyday, abandoning the positions on disability rights they once proudly defended.

“The history of the Republican writ large in the area of civil rights up until recently, there’s been a strong and sustained advocacy for civil rights,” said Tom Ridge, who was a Republican congressman at the time of the ADA’s passage and is now chairman of the National Organization on Disability. Ridge’s words about the decline of bipartisanship on disability aren’t empty “Party of Lincoln” platitudes; Dole voted for the Civil Rights Act as well as the Voting Rights Act; he brokered a compromise that helped extend the Voting Rights Act in 1982 with future ADA collaborator Kennedy.

“Regrettably, there hasn’t been as strong a champion within the Republican Party since he left the Congress,” said Ridge.

...

 In December 2012, Dole made a return to the Senate floor, hoping to leverage some of his “elder statesman” status by lobbying Republicans to support the Convention on the Rights of Persons with Disabilities. On the opposing side of the fight was Rick Santorum, who, like Dole, was a former senator with his own losing mission for the GOP nomination under his belt. The fact that Santorum was the father to a developmentally disabled daughter didn’t sway him to Dole’s side; instead, he urged Republicans to vote no, on the basis of unfounded fears that the treaty would permit bureaucrats from the United Nations to dictate disability policy. Santorum believed that this would, among other things, threaten parents who homeschooled disabled children. Newly elected Texas Senator-elect Ted Cruz also lobbied his future colleagues to vote against the treaty.

Magic Dirt: The Latest Quack Cure

Autism parents are highly vulnerable to pitches for quack "cures."

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.

 Brandy Zadrozny at NBC:

Black Oxygen Organics, or “BOO” for short, is difficult to classify. It was marketed as fulvic acid, a compound derived from decayed plants, that was dug up from an Ontario peat bog. The website of the Canadian company that sold it billed it as “the end product and smallest particle of the decomposition of ancient, organic matter.”Put more simply, the product is dirt — four-and-a-half ounces of it, sealed in a sleek black plastic baggie and sold for $110 plus shipping. Visitors to the Black Oxygen Organics website, recently taken offline, were greeted with a pair of white hands cradling cups of dirt like an offering. “A gift from the Ground,” it reads. “Drink it. Wear it. Bathe in it.”
...
Testimonials like these make up the majority of posts in dozens of Facebook groups, set up and overseen by BOO sellers, with hundreds of thousands of collective members, where BOO is heralded as a miracle drug. Teams of sellers in these private Facebook groups claim that, beyond cosmetic applications, BOO can cure everything from autism to cancer to Alzheimer’s disease. Conveniently in these times, BOO proponents say it also protects against and treats Covid-19, and can be used to “detox” the newly vaccinated, according to posts viewed by NBC News.
...

Ceara Manchester, a stay-at-home mother in Pompano Beach, Florida, helps run one of the largest anti-BOO Facebook groups, “Boo is Woo.” Manchester, 34, has spent the last four years monitoring predatory MLMs — or “cults,” in her view — and posting to multiple social media accounts and groups dedicated to “exposing” Black Oxygen Organics.

“The health claims, I had never seen them that bad,” Manchester said. “Just the sheer amount. Every single post was like, ‘cancer, Covid, diabetes, autism.’”

“I don’t feel like people are stupid,” Manchester said of the people who purchased and even sold BOO. “I think that they’re desperate or vulnerable, or they’ve been preyed upon, and you get somebody to say, ‘Hey, I’ve got this product that cures everything.’ You know when you’re desperate like that you might listen.”

Organ Transplant Discrimination

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.

A release from Senator Maggie Hassan (D-NH):

U.S. Senators Marco Rubio (R-FL) and Maggie Hassan (D-NH) introduced the Charlotte Woodward Organ Transplant Discrimination Prevention Act (S.3301), which would ensure that providers cannot discriminate against patients in need of an organ transplant solely on the basis of a disability. Congresswoman Jamie Herrera-Beutler (R-WA) introduced companion legislation in the U.S. House of Representatives earlier this year (H.R. 1235).

More than 25 states, including Florida, currently prohibit organ transplantation discrimination. However, discrepancies across state laws and delays in delivering relief to patients has made enforcement difficult. The legislation would set a baseline for states by clarifying that providers must comply with the protections afforded to patients with disabilities. The bill would also expedite injunctive relief through federal courts for patients and families that experienced discrimination due to a disability in the transplantation process.

The bill is named after Charlotte Woodward, an advocate with Down syndrome who received a heart transplant nine years ago and has fought to raise the issue of organ transplant discrimination in various states, including her home state of Virginia. Recently in Florida, Zion Sarmiento, who was born on June 15, 2021 with a congenital heart defect and Down syndrome, was denied a heart transplant and tragically passed away on October 8, 2021.

“It is heartless to discriminate against someone in need of an organ transplant because they have a disability,” Rubio said. “Zion, a 16-week old baby with Down syndrome, passed away because he was denied an organ transplant. Zion’s story is not only devastating, it is unacceptable. This legislation would honor Zion’s life and help ensure that what happened to him never happens to anyone else.”

"People with disabilities are too often overlooked and in being denied full inclusion can encounter hurdles that many of us cannot even begin to imagine, including when it comes to receiving the life-saving care of an organ transplant," Hassan said. “All individuals should be guaranteed quality of care, and that’s something I’ll always fight for. I’m proud to help lead this effort with Senator Rubio to make sure that discrimination has no place in medical care."

“As someone with Down syndrome who has had the opportunity to receive a life-saving heart transplant, I am so very, very grateful that this bill will give others the same,” Charlotte said.

“People with disabilities are no less deserving of life-saving organ transplants than people without disabilities,” National Down Syndrome Society President and CEO Kandi Pickard said. “We need a federal law to protect the rights of members of our community and to honor the value they bring to society. Charlotte’s bill reflects the interstate nature of the organ transplant system, recognizes the need for expedited review when access is denied, and establishes a legal framework for individuals and providers to seek truth and reach meaningful resolution.”

US Identifying Autism at Earlier Ages

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

Kelly A. Shaw and colleagues have a report at MMWR titled "Early Identification of Autism Spectrum Disorder Among Children Aged 4 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2018."  The abstract:

Description of System: The Autism and Developmental Disabilities Monitoring Network is an active surveillance program that estimates ASD prevalence and monitors timing of ASD identification among children aged 4 and 8 years. This report focuses on children aged 4 years in 2018, who were born in 2014 and had a parent or guardian who lived in the surveillance area in one of 11 sites (Arizona, Arkansas, California, Georgia, Maryland, Minnesota, Missouri, New Jersey, Tennessee, Utah, and Wisconsin) at any time during 2018. Children were classified as having ASD if they ever received 1) an ASD diagnostic statement (diagnosis) in an evaluation, 2) a special education classification of ASD (eligibility), or 3) an ASD International Classification of Diseases (ICD) code. Suspected ASD also was tracked among children aged 4 years. Children who did not meet the case definition for ASD were classified as having suspected ASD if their records contained a qualified professional’s statement indicating a suspicion of ASD.

Results: For 2018, the overall ASD prevalence was 17.0 per 1,000 (one in 59) children aged 4 years. Prevalence varied from 9.1 per 1,000 in Utah to 41.6 per 1,000 in California. At every site, prevalence was higher among boys than girls, with an overall male-to-female prevalence ratio of 3.4. Prevalence of ASD among children aged 4 years was lower among non-Hispanic White (White) children (12.9 per 1,000) than among non-Hispanic Black (Black) children (16.6 per 1,000), Hispanic children (21.1 per 1,000), and Asian/Pacific Islander (A/PI) children (22.7 per 1,000). Among children aged 4 years with ASD and information on intellectual ability, 52% met the surveillance case definition of co-occurring intellectual disability (intelligence quotient ≤70 or an examiner’s statement of intellectual disability documented in an evaluation). Of children aged 4 years with ASD, 72% had a first evaluation at age ≤36 months. Stratified by census-tract–level median household income (MHI) tertile, a lower percentage of children with ASD and intellectual disability was evaluated by age 36 months in the low MHI tertile (72%) than in the high MHI tertile (84%). Cumulative incidence of ASD diagnosis or eligibility received by age 48 months was 1.5 times as high among children aged 4 years (13.6 per 1,000 children born in 2014) as among those aged 8 years (8.9 per 1,000 children born in 2010). Across MHI tertiles, higher cumulative incidence of ASD diagnosis or eligibility received by age 48 months was associated with lower MHI. Suspected ASD prevalence was 2.6 per 1,000 children aged 4 years, meaning for every six children with ASD, one child had suspected ASD. The combined prevalence of ASD and suspected ASD (19.7 per 1,000 children aged 4 years) was lower than ASD prevalence among children aged 8 years (23.0 per 1,000 children aged 8 years).

Interpretation: Groups with historically lower prevalence of ASD (non-White and lower MHI) had higher prevalence and cumulative incidence of ASD among children aged 4 years in 2018, suggesting progress in identification among these groups. However, a lower percentage of children with ASD and intellectual disability in the low MHI tertile were evaluated by age 36 months than in the high MHI group, indicating disparity in timely evaluation. Children aged 4 years had a higher cumulative incidence of diagnosis or eligibility by age 48 months compared with children aged 8 years, indicating improvement in early identification of ASD. The overall prevalence for children aged 4 years was less than children aged 8 years, even when prevalence of children suspected of having ASD by age 4 years is included. This finding suggests that many children identified after age 4 years do not have suspected ASD documented by age 48 months.

Public Health Action: Children born in 2014 were more likely to be identified with ASD by age 48 months than children born in 2010, indicating increased early identification. However, ASD identification among children aged 4 years varied by site, suggesting opportunities to examine developmental screening and diagnostic practices that promote earlier identification. Children aged 4 years also were more likely to have co-occurring intellectual disability than children aged 8 years, suggesting that improvement in the early identification and evaluation of developmental concerns outside of cognitive impairments is still needed. Improving early identification of ASD could lead to earlier receipt of evidence-based interventions and potentially improve developmental outcomes.

From the report:

The site in California had the highest cumulative incidence of ASD by age 48 months and the fewest cases of suspected ASD and was the only site where prevalence among children aged 4 years was higher than among children aged 8 years (11). Multiple factors could contribute to ASD identification at this site. One of the site’s data sources was a state-funded regional center that serves persons with developmental disabilities and their families, including providing evaluations and service coordination (15). In addition, efforts have been made to promote early identification in the area. For example, the “Get SET Early” program has trained hundreds of pediatricians to developmentally screen children at well-baby examinations and refer them for evaluation when indicated (16). The contribution of these and other factors to variability in ASD identification across sites and over time merits further investigation.

 

One in Forty-Four

In The Politics of Autism, I discuss the uncertainty surrounding estimates of autism prevalence. 

Matthew J. Maenner and colleagues have a report in MMWR titled "Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2018."  The abstract:

Description of System: The Autism and Developmental Disabilities Monitoring (ADDM) Network conducts active surveillance of ASD. This report focuses on the prevalence and characteristics of ASD among children aged 8 years in 2018 whose parents or guardians lived in 11 ADDM Network sites in the United States (Arizona, Arkansas, California, Georgia, Maryland, Minnesota, Missouri, New Jersey, Tennessee, Utah, and Wisconsin). To ascertain ASD among children aged 8 years, ADDM Network staff review and abstract developmental evaluations and records from community medical and educational service providers. In 2018, children met the case definition if their records documented 1) an ASD diagnostic statement in an evaluation (diagnosis), 2) a special education classification of ASD (eligibility), or 3) an ASD International Classification of Diseases (ICD) code.

Results: For 2018, across all 11 ADDM sites, ASD prevalence per 1,000 children aged 8 years ranged from 16.5 in Missouri to 38.9 in California. The overall ASD prevalence was 23.0 per 1,000 (one in 44) children aged 8 years, and ASD was 4.2 times as prevalent among boys as among girls. Overall ASD prevalence was similar across racial and ethnic groups, except American Indian/Alaska Native children had higher ASD prevalence than non-Hispanic White (White) children (29.0 versus 21.2 per 1,000 children aged 8 years). At multiple sites, Hispanic children had lower ASD prevalence than White children (Arizona, Arkansas, Georgia, and Utah), and non-Hispanic Black (Black) children (Georgia and Minnesota). The associations between ASD prevalence and neighborhood-level median household income varied by site. Among the 5,058 children who met the ASD case definition, 75.8% had a diagnostic statement of ASD in an evaluation, 18.8% had an ASD special education classification or eligibility and no ASD diagnostic statement, and 5.4% had an ASD ICD code only. ASD prevalence per 1,000 children aged 8 years that was based exclusively on documented ASD diagnostic statements was 17.4 overall (range: 11.2 in Maryland to 29.9 in California). The median age of earliest known ASD diagnosis ranged from 36 months in California to 63 months in Minnesota.

Among the 3,007 children with ASD and data on cognitive ability, 35.2% were classified as having an intelligence quotient (IQ) score ≤70. The percentages of children with ASD with IQ scores ≤70 were 49.8%, 33.1%, and 29.7% among Black, Hispanic, and White children, respectively. Overall, children with ASD and IQ scores ≤70 had earlier median ages of ASD diagnosis than children with ASD and IQ scores >70 (44 versus 53 months).

Interpretation: In 2018, one in 44 children aged 8 years was estimated to have ASD, and prevalence and median age of identification varied widely across sites. Whereas overall ASD prevalence was similar by race and ethnicity, at certain sites Hispanic children were less likely to be identified as having ASD than White or Black children. The higher proportion of Black children compared with White and Hispanic children classified as having intellectual disability was consistent with previous findings.

Public Health Action: The variability in ASD prevalence and community ASD identification practices among children with different racial, ethnic, and geographical characteristics highlights the importance of research into the causes of that variability and strategies to provide equitable access to developmental evaluations and services. These findings also underscore the need for enhanced infrastructure for diagnostic, treatment, and support services to meet the needs of all children.

Marcus Lamb

 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.

Antivaxxers are sometimes violent, often abusive, and always wrong.

Tim Fitzsimmons at NBC:

Marcus Lamb, a co-founder and the CEO of the conservative Christian Daystar Television Network who vocally opposed Covid-19 vaccines, has died at 64, weeks after he contracted Covid-19, the network said.

“It's with a heavy heart we announce that Marcus Lamb, president and founder of Daystar Television Network, went home to be with the Lord this morning," the network said a tweet Tuesday. "The family asks that their privacy be respected as they grieve this difficult loss. Please continue to lift them up in prayer."

On his website, Lamb spread the myth that vaccines cause autism, hosting such notorious antivaxxers as Del Bigtree and RFK Jr. 

Republicans Account for 60 Percent of the Unvaxxed

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.

Antivaxxers are sometimes violent, often abusive, and always wrong.  

Unfortunately, Republican politicians and conservative media figures are increasingly joining up with the anti-vaxxers.  There is a great deal of overlap between MAGA World and the antivax movement.

From KFF:

By April 2021, a majority of U.S. adults (56%) self-reported they had already received at least one dose of a COVID-19 vaccine. Among the 43% of adults who said at that time that they had not yet been vaccinated, about four in ten (42%) identified as Republicans or Republican-leaning independents and about one-third (36%) identified as Democrats or leaned that way, while 16% identified as independents who didn’t lean toward either party. The partisan divide between vaccinated and unvaccinated adults became even more evident as larger shares of the population received COVID-19 vaccines. Now, six months later, in October 2021, one-quarter (27%) of U.S. adults say they have not gotten a COVID-19 vaccine, but the unvaccinated population is now disproportionately made up of those who identify as Republican or Republican-leaning, with six in ten (60%) identifying as Republican or Republican-leaning (compared to about four in ten of the U.S. total adult population1) and just one in six (17%) calling themselves Democrats or Democratic-leaning.