1,243

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. 

From CDC:

From January 1 to September 26, 2019, 1,243** individual cases of measles have been confirmed in 31 states. This is an increase of two cases from the previous week.

• This is the greatest number of cases reported in the U.S. since 1992. More than 75% of the cases this year are linked to outbreaks in New York. Measles is more likely to spread and cause outbreaks in U.S. communities where groups of people are unvaccinated.
• The majority of cases are among people who were not vaccinated against measles.
• Measles can cause serious complications. As of September 26, 2019, 131 of the people who got measles this year were hospitalized, and 65 reported having complications, including pneumonia and encephalitis.

Dr. David Brown at The Washington Post:

Measles is caused by a type of Morbillivirus; similar ones attack cats, cattle, seals and other animals. A common feature is the ease of transmission — a quality captured by what biologists call the “basic reproductive number” (denoted R0). It’s the number of new cases that occurs when an infected person circulates among susceptible people.

R0 is an average that depends on lots of things, including human behavior and population density. The biggest driver, however, is the bug itself. Measles has an R0 of 12 to 18 — so high that the infection is often described as the most contagious disease in man. In comparison, R0 for the 1918 pandemic influenza virus was 3.8. For smallpox, it is 4.5; for polio, 6; for SARS, 3.5.

The virus spreads through “respiratory aerosols,” which can hang in the air for hours. A study of measles transmission on airplane flights found that the average distance between the person with the disease and the person who came down with it was six rows. In one case, it was 17 rows.

...
 None of this would matter if the measles vaccine wasn’t safe. But it is. The most common serious reaction — a seizure caused by fever — occurs in 3 out of every 10,000 shots. It also doesn’t cause autism, as innumerable studies have proved, although vaccine skeptics who think the question is still open are unlikely to ever be convinced.

...
 It’s true that if you don’t vaccinate your child against measles you probably won’t pay a price for it. But eventually somebody will.

So, here’s the request: Vaccinate your child for that person.

Autism and Heckling

In The Politics of Autism, I write about the everyday struggles facing autistic people and their families -- including casual prejudice against disabled people.  Autistic people suffer when others use "autism" as a slur or curse.

KYW-TV in Philadelphia:

A day after Philadelphia Phillies outfielder Bryce Harper called out Washington Nationals fans for crossing the line with their heckling, his wife, Kayla Harper, revealed that those fans were targeting their newborn son Krew. She even said that some Nationals fans told her they wished her son was born with autism.

I truly doubt you are aware of the dms I have gotten from nats fans all season. Wishing my son has autism when he’s born for example. So yes all season.

— Kayla Harper (@kayyharper8) September 26, 2019

Long-Run Outcomes in Special Education

Uncertainty is a major theme of The Politics of Autism.  In the concluding section, I write:

A key question in autism policy evaluation is simple to pose, hard to answer: How do autistic people benefit? How much better off are they as a result of government action? While there are studies of the short-term impact of various therapies, there is surprisingly little research about the long term, which is really what autistic people and their families care about. As we saw in chapter 4, few studies have focused on the educational attainment of autistic youths. For instance, we do not know much about what happens to them in high school, apart from the kinds of classes that they take. One study searched the autism literature from 1950 through 2011 and found just 13 rigorous peer reviewed studies evaluating psychosocial interventions for autistic adults. The effects of were largely positive, though the main finding of the review is that there is a need for further development and evaluation of treatments for adults.

Jonathan Wai at Psychology Today:

Much of education research is short-term. This is understandable, given the extraordinary cost of a highly intensive intervention or program and the long-term follow up of such a program. Recently, however, Tyler Watts, Drew Bailey, and Chen Li have suggested, in a new paper in the Journal of Research on Educational Effectiveness, that education research should aim further than short-term evaluations of interventions, and the authors lay out how such longitudinal follow-ups of carefully implemented interventions might be incentivized broadly in education research.

Though ideally one would first conduct a randomized controlled trial and follow up with groups of both treated and untreated individuals well into adulthood, this ideal is not possible with special education due to the specific parameters outlined in IDEA. In "Exploring the links between receiving special education services and adulthood outcomes,” a new paper in the journal Frontiers in Education: Special Educational Needs, Tomoe Kanaya, Brenda Miranda, and I linked up publicly available large-scale datasets which allowed us to use a one-to-one propensity score matching technique alongside a unique research design. This helped us figure out how students who qualified for IDEA at any point—compared to students who did not—fared on long-term outcomes well into adulthood ranging across areas spanning educational attainment, economic self-sufficiency, social engagement, and health.

Overall, we discovered that across the years studied, those who were identified under IDEA in some capacity did not significantly differ from those who were not identified under IDEA. In other words, special education services did not appear to be strongly related to a wide range of outcomes in adulthood. One exception is that we found that IDEA did matter for Hispanic students on some outcomes.

The paper contains an appropriate caveat:

Furthermore, it is important to note that the data from the current study represent the special education practices and policies that were relevant for individuals born between 1980 and 1994. It is possible that subsequent modifications to IDEA, including stronger support for preschool special education services, the introduction of the autism category in 1990, and changes in learning disability diagnosis criteria in 2004 (34 C.F.R. §300), among other evolving changes, have altered which individuals qualify for services and how services are implemented. Future research could address these possibilities. Despite these limitations, the current study is a reflection of the current life circumstances of today's adults, and any examination of IDEA is a time-sensitive reflection of an evolving and dynamic set of services.

Antivax Tactics and Psychology

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. 

Brandy Zadrozny and Aliza Nadi at NBC:

Anti-vaccination activists have long targeted their message to parents of autistic kids. They have also, however, pursued another vulnerable population of parents searching for answers — mothers and fathers of babies who have died unexpectedly, especially when the deaths are linked to Sudden Infant Death Syndrome, or SIDS. At a time when the U.S. faces the largest outbreaks of vaccine-preventable illnesses in decades, a network of activists is finding new recruits to the anti-vaccination cause by raising questions about the sudden deaths of several dozen babies and young children.

That network includes discredited physician-turned-anti-vaccination celebrity Andrew Wakefield, whose retracted study popularized the false belief that vaccines are linked to autism; Del Bigtree, a former "Dr. Phil" producer who runs the country's most well-funded anti-vaccine nonprofit, Informed Consent Action Network; and social media activist Larry Cook, who hosts the largest and most active anti-vaccination community on Facebook.

Since 2018, Cook has published at least 20 different articles alleging a baby's death was the result of a vaccination — despite official, medically supported explanations that include SIDS, pneumonia and accidental asphyxiation. Clobes joined Cook's group after Evee died, and her story is among Cook's 20.

AT NYT, Jan Hoffman explains the psychology of vax hesitancy:

Many stumble on omission bias: “We would rather not do something and have something bad happen, than do something and have something bad happen,” explained Alison M. Buttenheim, an associate professor of nursing and health policy at the University of Pennsylvania School of Nursing.

People are flummoxed by numerical risk. “We pay more attention to numerators, such as ‘16 adverse events,’ than we do to denominators, such as ‘per million vaccine doses,’ ” Dr. Buttenheim said.

A concept called “ambiguity aversion” is also involved, she added. “Parents would like to be told that vaccines are 100 percent safe,” she said. “But that’s not a standard we hold any medical treatment to.”

Relatively few people are absolutists about refusing all vaccines. “But if you’re uncertain about a decision, you’ll find those who confirm your bias and cement what you think,” said Rupali J. Limaye, a social scientist who studies vaccine behaviors at the Johns Hopkins Bloomberg School of Public Health.

Increasing Prevalence of Developmental Disabilities

In The Politics of Autism, I write:

The number of people with a stake in the issue is going to mount. I am not saying that there will be a true increase in the prevalence of autism. As we saw in chapter 3, it is unclear how much of the apparent change involves awareness and diagnostic standards. Even if there has been a true increase in recent decades, there is no way of knowing whether it will go on. But the rise in the number of autism diagnoses and educational determinations will translate into a growing population of people who have lived with the autism label, and who think of themselves as autistic.

From the American Academy of Pediatrics:

Nearly 18% of children have developmental disability, a figure that has continued to rise over the past two decades, according to a new study.

Researchers from the Centers for Disease Control and Prevention and the Health Resources and Services Administration used data from the National Health Interview Survey to look at the prevalence of 10 developmental disabilities among children ages 3-17 years.

The overall rate was 17.8% in 2015-’17, up from 16.2% in 2009-’11 and 12.8% in 1997-’99, according to “Prevalence and Trends of Developmental Disabilities among Children in the U.S: 2009-2017,” (Zablotsky B, et al. Pediatrics. Sept. 26, 2019, https://doi.org/10.1542/peds.2019-0811). From 2015-’17, the most prevalent developmental disabilities were

• attention-deficit/hyperactivity disorder (ADHD) (9.5%),
• learning disability (7.9%),
• other developmental delay (4.1%),
• autism spectrum disorder (2.5%),
• stuttering or stammering, past 12 months (2.1%),
• intellectual disability (1.2%),
• seizures, past 12 months (0.8%),
• moderate/profound hearing loss (0.6%),
• cerebral palsy (0.3%) and
• blindness (0.2%).

Authors attributed increases in the overall rate of developmental disabilities since 2009 to increases in ADHD, autism and intellectual disability. Since that time, ADHD prevalence rose from 8.5% to 9.5%, autism rose from 1.1% to 2.5% and intellectual disability rose from 0.9% to 1.2%. In the meantime, there was a decline in children deemed as having an unspecified developmental delay from 4.65% to 4.1%, which the authors said may have been due to children being given a more specific diagnosis.

Children who were in their teens, male, had public health insurance, had low birthweight, those living in poverty and those in rural areas had the highest rates of developmental disabilities. From 2009-’17, rates rose significantly for children who were in their teens, male, white, Hispanic and those with private insurance.

Rate increases likely are due to a mix of better identification of children with developmental disabilities, changes in diagnostic criteria and changes in survey wording, according to the report.

“Given this growth, additional research may help to better understand the characteristics of children with developmental disabilities, the complex risk factors associated with developmental disabilities, and the accessibility of services and interventions which have been shown to improve long-term outcomes for those diagnosed with a developmental disability,” authors wrote.

Maureen S. Durkin, Ph.D., Dr.Ph., wrote in a related commentary, the rising rates may be a sign of progress. Children who were born preterm or with a congenital disorder are living longer, screening is improving and disabilities are more socially accepted. She called for long-term investments in early childhood education and other pediatric services.

“With the publication of these findings,” she wrote, “the need for expanded services and training to meet the needs of children with developmental disabilities cannot be ignored.”

Screening and Referral

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

Sonia A. Monteiro and colleagues have an article at Pediatrics titled "Screening and Referral Practices for Autism Spectrum Disorder in Primary Pediatric Care."  The abstract:

OBJECTIVES: To examine screening practices for autism spectrum disorder (ASD), subsequent referrals, and diagnostic outcomes within a large network of primary pediatric care practices.

METHODS: Rates of ASD screening with the Modified Checklist for Autism in Toddlers (M-CHAT) at 18- and 24-month well-child visits were examined among 290 primary care providers within 54 pediatric practices between June 2014 and June 2016. Demographic, referral, and diagnostic data were abstracted from the medical records for all children who failed the M-CHAT (ie, score of ≥3) at either or both visits.

RESULTS: Rates of M-CHAT screening were 93% at 18 months and 82% at 24 months. Among 23 514 screens, scores of 648 (3%) were ≥3 (386 at 18 months, 262 at 24 months) among 530 unique children who failed 1 or both screenings. Among screen-failed cases, 18% received a diagnosis of ASD and 59% received ≥1 non-ASD neurodevelopmental disorder diagnosis within the follow-up period. Only 31% of children were referred to a specialist for additional evaluation.

CONCLUSIONS: High rates of ASD-specific screening do not necessarily translate to increases in subsequent referrals for ASD evaluation or ASD diagnoses. Low rates of referrals and/or lack of follow-through on referrals appear to contribute to delays in children’s receipt of ASD diagnoses. Additional education of primary care providers regarding the referral process after a failed ASD screening is warranted.

Autism Discussion Shifts from Cure

In The Politics of Autism, I write:

The most basic questions trigger angry arguments. For instance, into what category do we put autism in the first place? In 2013, President Obama said that “we’re still unable to cure diseases like Alzheimer's or autism or fully reverse the effects of a stroke.” The language of “disease” and “cure” offends some in the autism community. “We don’t view autism as a disease to be cured and we don’t think we need fixing,” says Ari Ne’eman of the Autistic Self-Advocacy Network. “We do feel comfortable with the word disability because we understand what it means.” From this perspective, autism is difference that requires accommodation, not an illness that requires eradication. Adherents of this position liken autism to homosexuality, which psychiatrists once deemed to be a disorder. Conversely, some parents take offense at opposition to a cure. “Anyone with the mental and verbal ability to challenge autism research is not autistic on a scale that I care to recognize,” writes autism parent James Terminello. “Opposition to finding a cure is particularly hurtful to parents who still mourn the loss of the child that could have been. A line has been crossed.”

Jacqueline Stenson at NBC:

"I think that given the complexity and the variability of the causes and the manifestations of autism, trying to come up with a cure is probably not the right approach,” said autism researcher and psychologist Len Abbeduto, director of the University of California, Davis, MIND Institute in Sacramento.

An estimated 80 percent of autism cases involve genetic factors, and it tends to run in families, but there is no single “autism gene,” Abbeduto explained. In fact, research has shown that more than 100 genes, and maybe upwards of 1,000, may play a role. Researchers also suspect that environmental factors — such as exposures to infectious agents, pesticides or other toxins in pregnancy — may play a role.
...
These research developments come amid growing controversy over whether autism even needs a cure. Autism Speaks, an advocacy and research group founded in 2005, removed the word “cure” from its mission statement in 2016.

“In the beginning, [researchers] were looking more for the magic bullet, the magic pill. We were looking for the autism gene, and we thought that would ultimately lead to some kind of cure of autism,” psychologist Thomas Frazier, chief science officer at Autism Speaks in New York, said. “Then we recognized that we were way off base.”

...
Autism research spending in the U.S. totaled more than $364.4 million in 2016, the latest year for which figures are available, with 80 percent of that money coming from federal agencies and 20 percent from private organizations. Of the spending, just 2 percent went toward autism lifespan issues and 5 percent toward services, according to the government’s Interagency Autism Coordinating Committee. An additional 35 percent went to biology, 24 percent to risk factors, 16 percent to treatment and interventions, 10 percent to infrastructure and surveillance, and 8 percent to screening and diagnosis.

[see data here]

Paul Shattuck, director of the Life Course Outcomes Research Program at the A.J. Drexel Autism Institute in Philadelphia, and a member of the scientific council of the Organization for Autism Research, agrees that not enough attention is paid to adults with autism.

“We’re expending a lot of effort for very young children with autism, but as a society we kind of drop the ball once these young people become young adults,” he said. “There’s really not much there for autistic adults or their families in terms of services or even thinking how to support autistic people across the lifespan.”

Still 1,241

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. 

From CDC: "From January 1 to September 19, 2019, 1,241** individual cases of measles have been confirmed in 31 states. Two new cases were reported September 13 – 19, 2019. However, two cases previously reported were determined to not have been measles cases. Therefore, the national case count remains at 1,241."

Jennifer Lighter at NYT:

To prevent future outbreaks, we have to figure out what caused the last one. The problem is that we are misdirecting our attention. Much of it is focused on the global anti-vaccine movement.

But there is a much larger group: the “vaccine hesitant.” These people intentionally delay or deviate from the routine schedule, staggering vaccine administration according to their own timeline. This leaves children without adequate protection from preventable diseases and puts their community at risk for outbreaks. And it’s unscientific.

Of course, vaccine hestitancy itself stems from the antivax movement. 

How Antivaxxers Got to Newsom

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.  The antivaxxers have clout because many of them are affluent and educated.  As Dr. Paul Offit says, "These people are educated just well enough to make terrible decisions for their children."

California Governor Gavin Newsom waffled on legislation to reform vaccine exemptions. Melody Gutierrez, Taryn Luna, and John Myers at LAT:

The California Medical Assn., the main sponsor of the bill, paid Republican strategist Mike Madrid to lead a social media campaign in July aimed at boosting pro-vaccination messages on social media, recruiting parents to join in.

“The goal was to change the narrative,” Madrid said. “We had to show the loud voices were a fringe movement.”

The opposition had its own plan: lobby First Partner Jennifer Siebel Newsom.

Opponents approached her at a public event and later secured a meeting with her chief of staff. Parents against the bill said they hoped that Siebel Newsom would be sympathetic to their cause. Siebel Newsom declined to comment on her involvement, while the governor would only say to reporters that “everyone has opinions.”

In a tweet, Newsom called for changes, to the dismay of Assembly Speaker Anthony Rendon.

In an interview with The Times two days later, Rendon said his house felt “blindsided.”

“Our caucus was taken by surprise by the governor’s tweet,” he said.

Some in the Assembly went so far as to compare the governor to President Trump, who routinely airs his feelings on Twitter, sources said. Others said Newsom’s actions showed a disconnect with legislators and a lack of understanding of concerns for their safety as they debated the bill.

They also questioned his absence from the negotiating table and why his office failed to communicate with Pan.

“There were so many people speaking up that it became a collective concern,” said one legislator, who declined to be identified to speak freely about the situation. “It was a disappointment.”

In the Senate, some Democrats were concerned that Newsom had gone back on his word. Others, who represent dozens of vaccine skeptics in wealthy Los Angeles enclaves, were less critical of the governor. Understanding Pan’s frustrations, they agreed to follow his lead with a second bill, SB 714, which included changes he negotiated with the governor’s office.

Origins of Autism Legislation

In The Politics of Autism, I write:

No government agency has exclusive jurisdiction over all of these areas. The federal government takes the lead with some, while states and localities may be the main arenas for others. At each level, different bureaucracies deal with different aspects of autism. Courts and private organizations also play important roles in autism policymaking. Each place on the autism policy map has its own jargon and rules, hence the “alphabet soup” that bedevils parents.

Jerry Carino at The Asbury Park Press:

One day in 1997, two parents from Brick met with Rep. Chris Smith for three hours to discuss a growing but poorly understood health issue.

Bobbie and Billy Gallagher were raising two toddlers with autism, and their concerns prompted Smith to examine how the federal government was addressing the disorder.

“Nothing was being done for autism — $287,000 was being spent,” recalled Smith, whose Congressional district covers part of Monmouth, Ocean and Mercer counties. “That doesn’t even buy a desk with a person behind it.”

..
On Thursday, as Congress sent the Autism CARES Act to Trump, Smith thought of the Gallaghers, whose two toddlers Alana and Austin are now adults in their 20s. The family's push back in 1997 helped lead to the enactment of Smith's first bill on the issue — the Autism Statistics, Surveillance, Research and Epidemiology Act of 2000, which opened the door for comprehensive federal funding.

“There was very little research going on and the Gallaghers were desperate for help,” Smith said. “The CDC didn’t want my first bill. Now they’re more than happy to talk about it.”

Passage of Autism CARES

In The Politics of Autism, I write:

No government agency has exclusive jurisdiction over all of these areas. The federal government takes the lead with some, while states and localities may be the main arenas for others. At each level, different bureaucracies deal with different aspects of autism. Courts and private organizations also play important roles in autism policymaking. Each place on the autism policy map has its own jargon and rules, hence the “alphabet soup” that bedevils parents.

A release from Senator Mike Enzi:

U.S. Senators Mike Enzi, R-Wyo., and Bob Menendez, D-N.J., senior members of the Senate Finance Committee that sets national health policy, today applauded the unanimous, final passage of the Autism Coordination, Accountability, Research, Education and Support (CARES) Act of 2019 that, for the first time, considers the needs of individuals with autism spectrum disorder (ASD) well into adulthood and throughout their lifetime. The bill now heads to the president for his signature.

“I am glad the Senate unanimously reauthorized the Autism CARES Act to promote research, education and awareness into autism spectrum disorder and other developmental disabilities,” said Enzi. “This successful program helps us better understand causes and symptoms of autism spectrum disorder and improve the lives of millions of people affected by it.”

...

One in 59 children nationwide have ASD, according to the latest study by the Centers for Disease Control and Prevention (CDC) released last year, a jump of 15% since the previous study was conducted in 2016 and up from one in 166 in 2005.

Autism CARES 2019 builds upon the current law, which expires in September, and shapes federal autism policy and investment in research, early detection and research to develop new treatments and therapies for those with ASD and other developmental disabilities.

The bipartisan Autism CARES 2019 affirms Congress’s commitment to individuals with autism spectrum disorder and other intellectual and developmental disabilities, and their families. In addition to reauthorizing existing federal autism programs through 2024, the legislation strengthens those programs by adding the phrase “across the lifespan” where appropriate to ensure they can address the needs of individuals with ASD and other intellectual and developmental disabilities throughout all stages of life.

Autism CARES 2019 also:

• Authorizes research under the National Institutes of Health (NIH) to address the entire scope of autism spectrum disorder;
• Designates regional centers of excellence for ASD research and epidemiology;
• Directs activities to increase public awareness of autism, improve the ability of health providers to use evidence-based interventions, and increase early screening and detection;
• Authorizes $23.1 million to the CDC for developmental disability surveillance and research;
• Authorizes $50.6 million to the Health Resources and Services Administration (HRSA) for education, early detection, and intervention, and allows HRSA to prioritize new grant applicants in rural or underserved areas;
• Authorizes $296 million for the National Institutes of Health (NIH) for research;
• Requires the Department of Health and Human Services (HHS) to provide a report to Congress on the health and well-being of individuals of all ages with ASD and other developmental disabilities.

The Fight Over Julia

In The Politics of Autism, I write:

The most basic questions trigger angry arguments. For instance, into what category do we put autism in the first place? In 2013, President Obama said that “we’re still unable to cure diseases like Alzheimer's or autism or fully reverse the effects of a stroke.” The language of “disease” and “cure” offends some in the autism community. “We don’t view autism as a disease to be cured and we don’t think we need fixing,” says Ari Ne’eman of the Autistic Self-Advocacy Network. “We do feel comfortable with the word disability because we understand what it means.” From this perspective, autism is difference that requires accommodation, not an illness that requires eradication. Adherents of this position liken autism to homosexuality, which psychiatrists once deemed to be a disorder. Conversely, some parents take offense at opposition to a cure. “Anyone with the mental and verbal ability to challenge autism research is not autistic on a scale that I care to recognize,” writes autism parent James Terminello. “Opposition to finding a cure is particularly hurtful to parents who still mourn the loss of the child that could have been. A line has been crossed.”

At WP, Lindsay Bever writes of the controversy over Julia, the autistic Muppet on Sesame Street.

The Autistic Self Advocacy Network (ASAN), an organization run by and for autistic people, announced it had cut ties with “Sesame Street” after the children’s program partnered with Autism Speaks to make the Muppet the face of a public service campaign encouraging early screening and diagnosis of autism. ASAN has accused Autism Speaks of using “language of acceptance and understanding to push resources that further stigma and treat autistic people as burdens on our families.” It contends that resource materials from Autism Speaks encourage parents “to view autism as a terrible disease from which their child can ‘get better.’ ”
...
Autism Speaks denied ASAN’s characterization of its approach, or resource materials. Lisa Goring, Autism Speaks’s chief strategic initiatives and innovation officer, said the group’s job “is to empower families with the information they need so their child can be successful.”

Jeanette Betancourt, senior vice president of U.S. social impact at Sesame Workshop, said Sesame is “saddened” ASAN has ended its relationship with the children’s program as it has been “incredibly supportive of our efforts along the way and of contributing to Julia.”

Transition Guidance

In The Politics of Autism, I write:

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.

Corey Mitchell at Education Week:

New guidance from the U.S. Department of Education spells out how school systems and state agencies can coordinate to help students with disabilities prepare for life after high school.

A 16-page Q&A produced by the agency's special education and postsecondary education offices outlines how schools can use the Individuals with Disabilities Education Act and vocational rehabilitation funds to support dual-enrollment programs, create college and transition options for students with intellectual disabilities, and finance other initiatives designed to ease the transition between grades K-12 and postsecondary education and training.

Buttigieg on Autism

In The Politics of Autism, I discuss the issue's role in presidential campaigns.

Zack Budryk at The Hill:

South Bend, Ind., Mayor Pete Buttigieg (D), a 2020 presidential contender, spoke of the need for educators who understand the nature of autism in an interview Tuesday with the progressive organization Supermajority, adding that increased diagnoses are due to people coming “out of the shadows.”

Responding to a question from the mother of an autistic student, Buttigieg said “IEPs [individualized education plans] need to be adapted to support children with autism. Also more broadly, the federal law that creates opportunities for children with different abilities needs to be fully funded. It hasn’t been.”

“We need to make sure that educators and administrators are trained in how to support kids with autism because it’s way more kids than you would think, and we’re learning about this as time goes on [and] more diagnoses happen and more parents and kids come out of the shadows,” the South Bend mayor added.

“There are so many contributions that ... kids and adults with autism can make, but we’ve got to unlock their potential too,” he added, noting his husband Chasten’s experience teaching theater to autistic students, which he said shows him “just what is possible if you have teachers equipped with the right insight and expertise.”

Race and Special-Ed Teachers

 In The Politics of Autism, I write about special education and laws that affect students with disabilities, such as the Individuals with Disabilities Education Act. The books also discusses the experiences of different economic, ethnic and racial groups.

Madeline Will and Corey Mitchell at Education Week:

It's a constant struggle for school districts across the country to find qualified special education teachers. An extra challenge: finding special educators of color to help meet the needs of a student population that can be disproportionately nonwhite.

Just over 82 percent of special education teachers in public schools are white, according to 2011-12 federal data, the most recent available. Meanwhile, only about half of students receiving special education services are white, according to 2017-18 data.

From the Journal of Blacks in Higher Education:

A new study led by LaRon A. Scott, an assistant professor in the department of counseling and special education at Virginia Commonwealth University, offers strategies school districts can use to recruit and retain Black male teachers in special education programs.

According to Dr. Scott and his co-author, Quentin Alexander, an assistant professor of counseling education at Longwood University in Virginia, Black boys labeled with a disability are subjected to poor educational outcomes. And in special education, there is a smaller ratio of Black male teachers based on the disproportionately larger rate of Black students, particularly Black boys, enrolled in special education classes. For thousands of Black students in special education, they could go through their entire K-12 education without having a Black male teacher. As a result, students solely rely on their academic, social and interpersonal needs being met by special education teachers who represent racial and gender backgrounds that may be widely different.

In the paper the authors develop a strategy for increasing the number of Black male teachers who pursue careers as special education teachers. The strategy involves developing specific motivations for Black men to become special education teachers as well as focused strategies for recruitment and retention of Black males for these positions. They call for school districts to devote funding for these recruitment and retention programs and to offer mentors to the Black male teachers that are recruited.
Dr. Scott is a graduate of Radford University in Virginia. He holds a master’s degree in special education from Virginia Commonwealth University and an educational doctorate from Walden University.

The full study, “Strategies for Recruiting and Retaining Black Male Special Education Teachers,” was published on the website of the journal Remedial and Special Education. It may be accessed here.

Limited Trust in Vaccines

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. 

CDC reports no new measles cases last week.  Unfortunately, the start of the school year means that more cases are likely to crop up in the months ahead.

A release from Harvard T.H. Chan School of Public Health:

A new poll from Harvard T.H. Chan School of Public Health and SSRS finds that Americans broadly support (84%) requirements for parents to have children vaccinated against preventable diseases like measles, mumps, and rubella in order to attend school.

But the poll also shows limited trust in vaccines and public health agencies. Just about half of adults (54%) think childhood vaccines are “very safe” for most children and only a third (37%) say they trust public health agencies “a great deal” for information about childhood vaccine safety.

“The public’s limited trust in both childhood vaccines and public health agencies makes room for anti-vaccine sentiment in exemption policy debates,” says Gillian K. Steel Fisher, senior research scientist in the Department of Health Policy and Management at Harvard Chan School and assistant director of the Harvard Opinion Research Program.

“Public health agencies need to partner with trusted health professionals, including doctors, nurses, and pharmacists, in order to protect public policy support for vaccines and ultimately children.”

Younger people (age 18-34) are less likely than the oldest generation (age 65+) to believe childhood vaccines are “very safe” (48% vs. 61%) or trust public health agencies for information about childhood vaccine safety (31% vs. 44%).

Among parents of children under 18, about one in seven (15%) say they have delayed or not given their child vaccines because of concerns about safety. Parents of children under 18 do not differ from those without children with respect to policy support, trust in vaccines, or trust in public health agencies for vaccine safety information.

IVF and ASD

Uncertainty and complexity are major themes of The Politics of Autism.  The topic encompasses many unanswered questions and affects people in diverse and unexpected ways.

At The Washington Post, Ariana Eunjung Cha reports on Danielle Rizzo, whose two sons are autistic.  Both were born as a result of in vitro fertilzation.

Rizzo filed a lawsuit in U.S. District Court for the Northern District of Illinois in July 2017. In her complaint, she alleged that [the sperm donor's] online profile was a lie and that he was not an “appropriate candidate for sperm donation.” She sued Idant and Daxor, Idant’s former parent company, under the state’s consumer fraud and deceptive practices act.

She says in the complaint that research, based on public documents and calls to his relatives, showed that the donor had no college degrees, had been diagnosed with ADHD, and “went to a school for children with learning and emotional disabilities.” (Idant, and other sperm banks, generally do not verify their donors’ medical and educational backgrounds.) Moreover, her attorneys wrote in the filing, “Donor H898 is a prolific sperm donor who has fathered at least 12 children through sperm donation, and that each of those children has either been diagnosed with Autism, or suffers from signs and symptoms associated with Autism.” In court documents, other mothers corroborated the story.

 Guidelines from the Society for Assisted Reproductive Technology, which represents fertility clinics in the United States, call for mandatory genetic testing for only one disease: cystic fibrosis. But most clinics say they test for several hundred. There is no test for autism.

...

As of August, Repro Lab was still selling vials, priced at $450-$525, from the donor. A Repro Lab official said they received a report from an anonymous caller regarding an increased risk of autism, but the report was “unsubstantiated,” as the donor “did not report any history of autism in his family.”

“We would deny participation to a donor in our program if he or any first-degree relative had a history of autism,” the company said.

Self-advocates strenuously object to such policies.

 In The Politics of Autism, I write:

Consider the next possible step for in-vitro fertilization. Suppose that scientists refine pre-implantation screening so that they could tell whether a particular embryo’s genetic make-up entails a high probability of autism.  If so, then doctors would presumably discard it in favor of another embryo that they would implant in the mother’s womb.  Some say that we need to debate the use of such techniques to screen for autism.   Ethicist Wesley J. Smith disagrees: “That is like saying allowing eugenic cleansing for racial features is a debate we need have: Both are invidiously discriminatory and have no place in an enlightened, equality-believing society.” 

Antivax Activists Throws Liquid on CA Senators

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.  Unfortunately, Republican legislators in some states are opposed to vaccine mandates.

Hannah Wiley at the Sacramento Bee:

An anti-vaccine activist who traveled to the Capitol to protest on the final day of the legislative year threw a menstrual cup at state senators on Friday afternoon, prompting a quick recess and an immediate evacuation of the chambers.

The protesters were watching from the upstairs balcony in the Senate at about 5:15 p.m., when a woman hurled what the California Highway Patrol called “a feminine hygiene device containing what appeared to be blood” at several lawmakers. “That’s for the dead babies,” she yelled.

Rebecca Dalelio, 43, was charged with felony vandalism, misdemeanor battery, and multiple other misdemeanor counts related to disrupting official state business. Her bail is set at $10,000, according to Sacramento County Sheriff’s Department records.

2/2 These anti-vaxxers are engaging in criminal behavior. They’ve now repeatedly assaulted Senators & are engaging in harassing & intimidating behavior every single day, as we try to do the people’s work. They’re a cancer on the body politic & are attacking democracy.

— Scott Wiener (@Scott_Wiener) September 14, 2019