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Friday, September 20, 2019

Passage of Autism CARES

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.
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.”
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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.

Thursday, September 19, 2019

The Fight Over Julia

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.

Wednesday, September 18, 2019

Buttigieg on Autism


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.”

Tuesday, September 17, 2019

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 economicethnic 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.

Monday, September 16, 2019

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.

Sunday, September 15, 2019

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.” 

Saturday, September 14, 2019

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.

Friday, September 13, 2019

Amicus Brief Against "Public Charge" Rule


The Arc and seventeen other national disability advocacy groups represented by the global law firm Latham & Watkins filed an amicus brief in support of litigation to stop the U.S. Department of Homeland Security (DHS) from implementing its new “public charge” rule. Twenty-one states, led by California, Washington, and New York, have filed cases against the Trump Administration to block the new rule. The advocacy groups – representing tens of thousands of people with disabilities and their families across the country – claim that the new public charge rule will prevent people with disabilities from entering this country or becoming legal residents in violation of federal disability law.

“The new public charge rule is based on an insidious and outdated notion that people with disabilities do not have a valued place in American society,” said Alison Barkoff, Director of Advocacy for the Center for Public Representation. “Almost 30 years ago, Congress removed the per se exclusion of immigrants with disabilities, recognizing the discrimination and prejudice these policies embodied. In the following years, Congress has repeatedly legislated its commitment to include and integrate people with disabilities in all aspects of life. This new rule flies in the face of that progress and federal law.”
“The new rule punishes immigrants who use Medicaid, even though Medicaid is the only way to access critical disability services,” said Claudia Center, Senior Staff Attorney with the American Civil Liberties Union. “Congress has explicitly recognized the importance of Medicaid in enabling people with disabilities to be productive, contributing members of society. Studies show that access to Medicaid increases employment for people with disabilities. That is the opposite of a public charge.”
“This new policy is devastating to many people with intellectual and developmental disabilities and their families. It discourages immigrant families from utilizing critical public services out of fear of harming their immigration status. The rule will increase poverty, hurt public health, and worsen housing instability. It’s the latest callous tactic in restricting access to necessary services and supports. The Arc continues our work to ensure that non-citizens with any type of disability have a fair opportunity to enter and reside legally in the U.S., without unnecessary or discriminatory restrictions based on their disability,” said Peter Berns, CEO of The Arc.
“We are proud to represent the disability community in this important litigation,” said Sarah Ray, a partner with the global law firm Latham & Watkins. “Our public interest organization partners across the disability and immigration sectors report that this new rule is causing serious fear and confusion among immigrants – especially those with disabilities and those whose family members have disabilities. This rule violates federal law and must be stopped before it goes into effect on October 15th.”
For more information about the public charge rule and its impact on people with disabilities, see www.medicaid.publicrep.org/feature/public-charge/ or www.protectingimmigrantfamilies.org.

Thursday, September 12, 2019

Autism CARES

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.

Autism CARES Act Reauthorization
Contact your Members of Congress!

The Autism CARES Act will sunset (expire) on September 30, 2019, if it is not reauthorized. The House passed a bill (HR. 1058) on July 24 which reauthorizes the law for five years.
The Senate now must pass its companion bill (S. 427) within the next two weeks!
IMMEDIATE ACTION NEEDED:
Contact your Senators today! Urge them to co-sponsor and urge action in the Senate on S. 427, the Autism CARES Act Reauthorization Act.

There are currently 36 Senator co-sponsors. we need 100! If you don’t see your Senator listed below, please call them now!

Dial 202-224-3121. Ask to be connected to your senator. Say please co-sponsor and pass S. 427 the Autism CARES Act now.

In addition, please use this action alert to send an email to your Senators: http://takeaction.autism-society.org/app/write-a-letter?5&engagementId=496322

Wednesday, September 11, 2019

California Republicans Side with Anti-Vaxxers



Mariel Garza at LAT:
[I]t was dismaying to see state Senate Minority Leader Sen. Shannon Grove of Bakersfield and other Republican legislators side with the opponents on the bills to close a loophole that was allowing people to get around the state’s vaccination laws.
...
If this is a ploy to turn the so-called “anti-vaxxers” into GOP voters, they may not have great luck. Those opposed to mandatory vaccines don’t split along party lines. In fact, some of the places that have seen the lowest vaccination rates are solidly liberal communities, like Marin County and Santa Cruz.

Autistic People Can Be Good Students of Behavior

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  But people on the spectrum also have strengths in areas that NT people expect.

Autism spectrum disorders (ASD) are characterized by the inability of individuals to gauge the emotions and mental states of other people. However, if the lens is widened to include the behavior of people in general, those with ASD traits are as good or even slightly better social psychologists than people who do not have traits of autism, Yale researchers report Sept. 9 in the journal Proceedings of the National Academy of Sciences.
“People with ASD traits seem to be able to analyze how people in general will react in a social situation, even if they have difficulties judging the mental states of individuals,” said Anton Gollwitzer, a doctoral student in the Department of Psychology.
Gollwitzer and senior author John Bargh analyzed results of an online quiz taken by 6595 respondents from 104 countries. In this quiz, participants attempted to predict how people in general will react in a social situation — what Gollwitzer calls “Social Psychological Skill.” The quiz included questions such as: Do people feel more responsible for their behavior in groups than as individuals? (No) Does catharsis work: If I am angry, will taking out my hostilities on a stuffed doll make me feel better?” (No) On average, do people work harder in groups or as individuals? (As individuals).
Surprisingly, those with ASD traits had slightly better scores on these questions than those without those traits. Gollwitzer said that the general nature of these questions likely allowed ASD individuals to view the situation analytically, without needing to assess emotional or mental states of individuals. This skill may help them compensate for their difficulties in reading others’ mental states in order to function in a social society.
The article:
 Anton Gollwitzer, Cameron Martel, James C. McPartland, and John A. Bargh, "Autism Spectrum Traits predict Higher Social Psychological Skill, Proceedings of the National Academy of Sciences, first published September 9, 2019 https://doi.org/10.1073/pnas.1911460116
Social-cognitive skills can take different forms, from accurately predicting individuals’ intentions, emotions, and thoughts (person perception or folk psychology) to accurately predicting social phenomena more generally. Past research has linked autism spectrum (AS) traits to person perception deficits in the general population. We tested whether AS traits also predict poor accuracy in terms of predicting generalized social phenomena, assessed via participants’ accuracy at predicting social psychological phenomena (e.g., social loafing, social projection, group think). We found the opposite. In a sample of ∼6,500 participants in 104 countries, AS traits predicted slightly higher social psychological skill. A second study with 400 participants suggested that heightened systemizing underlies this relationship. Our results indicate that AS traits relate positively to a form of social cognitive skill—predicting social psychological phenomena—and highlight the importance of distinguishing between divergent types of social cognition.
... 
Our findings may also help explain why individuals with ASD exhibit adequate person perception performance in settings that allow for deliberation, reflection, and reasoning (e.g., extended time) (18). Individuals with ASD may be recruiting their knowledge of social psychological phenomena as a form of compensatory learning to understand other individuals’ mental states.

Tuesday, September 10, 2019

Newsom Signs Vax Reform


Antivaxxers failed to stop enactment of reform legislation in California.




A release from California State Senator Richard Pan:
Dr. Richard Pan, Assemblywoman Lorena Gonzalez and a broad coalition of doctors, health care providers, public health officials, family and child advocates and parents celebrated the signing of Senate Bill 276 into law today, which will prevent fake medical exemptions and require oversight of the medial exemption process.
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Senate Bill 276 will require physicians to submit information to California Department of Public Health (CDPH), including the physician’s name and license number and the reason for the exemption, which CDPH will check to ensure they are consistent with the Center for Disease Control’s guidelines or stand of care. The physician must also certify that they have examined the patient in person.
Additionally, CDPH will create and maintain a database of medical exemptions. CDPH will have the authority to revoke medical exemptions granted by licensed physicians if they are found to be fraudulent or inconsistent with standard of care. This authority will give the state public health officer the tools necessary to contain and prevent further outbreaks.
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After working with the Governor’s office, Dr. Pan agreed to amendments that are contained in a separate measure, Senate Bill 714.
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Following a measles outbreak in Disneyland in 2014, California legislators passed Senate Bill 277, authored by Dr. Pan, which eliminated all non-medical exemptions to the required vaccines for school entry. As a result of the implementation of Senate Bill 277, overall vaccination rates have increased sharply statewide since 2015. Figures from earlier this year show that immunization rates remain high, but have decreased slightly over the last two years. The report shows that 94.8 percent of kindergarteners in 2018-2019 have been vaccinated, a 0.3 percent decrease from the 2017-2018 school year.
However, California has also experienced a dramatic increase in the number of medical exemptions. Last year it had tripled (from 0.2 percent in 2015-16 to 0.7 percent in 2017-18). Data from this year shows the percentage has quadrupled to 0.9 percent. Low vaccination rates in certain pockets of the state have put children and communities at risk. More than 100 schools have a medical exemption rate over 10 percent, far beyond what should be expected, putting children and communities at risk.
The vaccine schedule prevents measles and other types of diseases, including pertussis, (also known as whooping cough), which is marked by severe coughing attacks that can last for months. Infants too young for vaccination are at greatest risk for life-threatening cases of pertussis.
When measles spreads in a community with immunization rates below 94 percent, the protection provided by ‘community immunity’ is lost. This means that many people, are at risk of becoming infected, including those who cannot be immunized, infants, chemotherapy patients and people with HIV or other conditions.
The hesitation to vaccinate on the part of a growing number of parents stems from misinformation such as the now retracted 1998 study that falsified data to purport a link between autism and the measles vaccine. The study was authored by Andrew Wakefield who was later found to be lying. Also, numerous subsequent studies worldwide involving hundreds of thousands of children have proved that vaccines are safe and do not cause autism.
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Monday, September 9, 2019

1,241

In The Politics of Autism, I look at the discredited notion that vaccines cause autismTwitterFacebook, and other social media platforms have helped spread this dangerous myth.   Measles can kill.

From CDC:
From January 1 to September 5, 2019, 1,241individual cases of measles have been confirmed in 31 states. This is an increase of 7 cases from the previous week. However, only two of these cases were recently ill. The rest were identified as past cases.
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 5, 2019, 130 of the people who got measles this year were hospitalized, and 65 reported having complications, including pneumonia and encephalitis.
Nick Paumgarten at The New Yorker:
One need not relitigate the case for vaccines here. There have been more than a dozen large-scale, peer-reviewed studies—the most recent one in Denmark, involving more than six hundred and fifty thousand children—that have found no connection between the M.M.R. vaccine and autism. Are there side effects to vaccines? Sometimes. Are there bad doses or batches? If there weren’t, there would be no such thing as the National Vaccine Injury Compensation Program. Does Big Pharma benefit from the vaccine protocol? You bet. At the end of July, Merck, the only U.S. manufacturer of the M.M.R. vaccine, announced that it had earned six hundred and seventy-five million dollars in the previous quarter from the M.M.R. vaccine and the chicken-pox vaccine, a fifty-eight-per-cent increase from the same period last year.
But vaccines work, both for individuals and for the general public. They are one of the great advances of modern times. And they do not cause autism. The science on this point is settled, to the extent that any science ever is, in the pursuit of proving a negative.
...
But, if we have to pick a Patient Zero, Andrew Wakefield will do. Wakefield is the British gastroenterologist who produced the notorious article, published in The Lancet in 1998, linking the M.M.R. vaccine to autism. The study, which featured just twelve subjects, was debunked, the article was pulled, and Wakefield lost his license to practice medicine—as well as his reputation, in scientific circles anyway. But, owing to his persistence in the years since, his discredited allegations have spread like mold. In the anti-vaxxer pantheon, he is martyr and saint. There are also the movement’s celebrities, such as Jenny McCarthy and Robert F. Kennedy, Jr., stubborn in the face of ridicule, and the lesser-known but perhaps no less pernicious YouTube evangelists, such as Toni Bark, a purveyor of homeopathic products, and the Long Island pediatrician Lawrence Palevsky. If your general practitioner is Dr. Google, you can find a universe of phony expertise. The movement seems to sniff out susceptibility. Not surprisingly, there is money there, though the financial incentives behind this strand of advocacy are less clear than, say, what has led the Koch brothers to champion fossil fuels. This spring, the Washington Post reported that the New York hedge-fund manager Bernard Selz and his wife, Lisa, have given more than three million dollars to anti-vaccination causes and helped finance “Vaxxed,” Wakefield’s 2016 documentary, which purports to reveal a C.D.C. conspiracy to cover up the connection between vaccines and autism. Needless to say, the anti-vaccination ethos is by no means exclusive to the New York tristate-area Orthodox community. It thrives in certain pockets—affluent boho-yoga moms, evangelical Christians, Area 51 insurgents. The vaccination rates are about the same in Monsey and in Malibu. Before New Square, the three most recent big outbreaks of measles occurred among Somali immigrants, in Minnesota; Amish farmers, in Ohio; and a hodgepodge of visitors to Disneyland.

Sunday, September 8, 2019

Vax Agreement in California

In The Politics of Autism, I look at the discredited notion that vaccines cause autismTwitterFacebook, and other social media platforms have helped spread this dangerous myth.

California Governor Gavin Newsom will sign a bill tightening vaccine mandates, but with some compormises.

Melody Gutierrez at LAT:
The agreement between state Sen. Richard Pan (D-Sacramento) and Newsom calls for the governor to sign SB 276, which has passed the Legislature, and for revisions to be placed in separate legislation, SB 714, which requires approval by the Assembly and Senate by Sept. 13. Newsom’s office said the governor will sign SB 276 once the Legislature passes SB 714 with his changes. Legislative leaders said Friday that they support the new changes under the deal.
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SB 714, which is also written by Pan, would invalidate any medical exemption from a doctor who has faced disciplinary action by the state medical board.
...
 The changes under SB 714 include Newsom’s proposal to grandfather in all existing medical exemptions before Jan. 1, causing concern among critics that such a move would prompt a rush for new vaccine exemptions.
However, Newsom’s amendment contains a key caveat: New medical exemptions would be required when a child enters kindergarten, seventh grade or changes schools. By adding that provision, permanent medical exemptions would no longer be valid throughout a child’s K-12 education. A similar approach was used when the state eliminated personal belief exemptions in 2015 under another bill by Pan that allowed immunization waivers to remain valid until a child reached kindergarten, seventh grade or changed schools.
Under the deal reached Friday, temporary medical exemptions that currently allow a doctor to use his or her discretion as to the length of time they remain valid would be limited to one year.
SB 714 will also remove a provision called for in SB 276 that would have required doctors to certify that medical exemptions are accurate, under penalty of perjury.
From Dr. Pan:
As the latest measles outbreak threatens the country’s elimination status, California acted to keep children safe at school by abolishing non-medical exemptions. Unfortunately, a few unscrupulous physicians are selling inappropriate medical exemptions, and we need SB276 stop the corruption of medical exemptions that endanger children. I appreciate the Governor’s commitment to sign SB 276 with amendments contained in SB 714 that we both agree upon to ensure we maintain the community immunity needed to protect our kids.”

Saturday, September 7, 2019

Barriers to College Access and Success

In The Politics of Autism, I discuss the growing number of college students on the spectrum

Amy L. Accardo, and colleagues have an article at The Journal of Autism and Developmental Disorders titled "College Access, Success and Equity for Students on the Autism Spectrum."

The abstract:
College may be considered a gateway to success, yet access to college is limited for young adults with autism. Given the research recommendations to elicit student experiences and to communicate among universities to improve college access, success, and equity, the present study examined the questions: What factors are perceived as pathways to success or barriers to success by college students on the autism spectrum? What university provided accommodations and/or support services do they prefer? Participants from four universities completed surveys and semi-structured interviews. Findings from the multi-university study suggest the need to provide transition planning and systematic non-academic social and emotional supports from the start of the college experience as well as specific training for faculty, staff, and peers.
From the article:
Across all four universities students on the autism spectrum noted parent expectations and support as key to accessing and attending college and they defined college success in both academic and non-academic terms including development of a social network. Similarly, students reported factors leading to success to include goals of employment, self-determination, and self-advocacy for needed supports, and reported barriers to success as mental health challenges (including co-occurring conditions) and non- academic stressors (such as lack of awareness of disability and faculty members). Unlike the single-university study, students in the current study identified a lack of financial resources as a barrier to success. In terms of attaining college equity through accessing accommodations and supports, fondings also align with the prior one-university findings (Accardo et al. 2018) with students again reporting extended time, copy of notes, priority registration, academic coaching, tutoring, mentorship and the writing center as top accommodations and support services, and social skills groups as one of the least preferred supports. Unlike the previous study, students in the present study were less positive about summer transition programs, likely due to differences in the programs provided across universities.