Transformational Advocacy Project

In The Politics of Autism, I discuss the employment of adults with autism and other disabilities. Many posts have discussed programs to provide them with training and experience.

Sarah Wood in Diverse Issues in Higher Education:

MERISTEM is a day and residential program in Sacramento that helps young adults with Autism and other developmental difficulties transition into independent living and employment. The program has 50 students from the ages of 18 to 28.

After California Assembly Bill 2840 was signed by the governor, funding an Autism employment pilot program, 12 MERISTEM students were invited to become part of a leadership lab. The group was eventually named Transformational Advocacy Project (TAP), and members interview employers and individuals with ASD to gather data for their manual and trainings.

TAP also partnered with the California Workforce Development Board, the Sacramento Employment and Training Agency and the California Workforce Association to help with the process and meets weekly with peer collaborators from Los Angeles County.

...
 TAP established two pilot programs in Sacramento and Los Angeles to test ideas for the employer manual and training sessions. Eventually, the manual will consist of visual supports, presentation materials, webinar series and video series.

In contrast to other manuals, TAP’s will be written from the voice of an autistic individual.

Antivaxxers Fail to Block NY Law

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

Jon Campbell at LoHud:

A state judge on Friday declined to block New York's new law removing the religious exemption for required vaccinations, pointing to previous court decisions that seem to uphold the state's right to mandate certain vaccines to attend public school.

In his ruling, Supreme Court Justice L. Michael Mackey in Albany denied a request for a temporary restraining order by the plaintiffs, a series of families being represented by vaccine critic Robert F. Kennedy Jr. and fellow attorney Michael Sussman of Rockland County.

The order would have blocked the state from implementing the law, which Gov. Andrew Cuomo and lawmakers approved last month, as the lawsuit continues through the courts.

"Plaintiffs have not shown a likelihood of success on the merits sufficient to sustain their heavy burden at this stage of the newly-filed action," Mackey wrote Friday.

Decision here. 

Autism, Vaccines, Measles, and Distrust of Government

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

At The Atlantic, Peter Beinart writes that distrust of vaccines has grown in tandem with distrust of government.

.In 2002, Representative Dan Burton, who in the 1990s had repeatedly implied that the Clintons were involved in the death of Deputy White House Counsel Vince Foster, invited the disgraced doctor to testify before his committee. Burton—whose grandson has autism—went on to hold at least 20 hearings, suggesting that government scientists were covering up a link between vaccines and autism.

Burton was a harbinger. After a Republican presidential debate in 2011, one of the candidates, Michele Bachmann, claimed that the HPV vaccine, which protects against cervical cancer, causes mental retardation. While running for president in 2015, Senator Rand Paul—a physician—argued against mandatory vaccinations by asserting that there are “many tragic cases of walking, talking, normal children who wound up with profound mental disorders after vaccines.” And from 2012 to 2014, while Donald Trump was claiming that President Barack Obama hadn’t been born in the United States, he also tweeted more than 30 times about the supposed dangers of vaccines.

Yet it’s not only conservatives who translate their suspicion of government into suspicion of vaccines. Many liberals distrust the large drug companies that both produce vaccines and help fund the Food and Drug Administration, which is supposed to regulate them. The former Green Party presidential candidate Jill Stein has suggested that “widespread distrust” of what she describes as the medical-industrial complex is understandable because “regulatory agencies are routinely packed with corporate lobbyists and CEOs.” The environmental activist Robert F. Kennedy Jr. claims that thimerosal, a preservative formerly used in some vaccines, harms children. Bright-blue counties in Northern California, Washington State, and Oregon have some of the lowest vaccination rates in the country.

Although polls suggest that conservatives are slightly less accepting of vaccines than liberals are, a 2014 study found that distrust of government was correlated with distrust of vaccines among both Republicans and Democrats. Indeed, the best predictor of someone’s view of vaccines is not their political ideology, but their trust in government and their openness to conspiracy theories.

Death and Measles

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

Jennifer Glenza at The Guardian:

Catherine Montantes was a 28-year-old college student, training to become a border patrol agent, and recently diagnosed with an autoimmune disorder.

When she stepped into the Lower Elwha tribal health clinic in Port Angeles, Washington, she had no idea she arrived just an hour after a 52-year-old infected with measles. The virus is one of the most contagious and can live on infected surfaces for up to two hours.

Despite being vaccinated against measles, Montantes was killed less than three months later by the disease, because her immune system was suppressed by medication to control the autoimmune disorder dermatomyositis.

Her death, on 15 April 2015, became the last recorded death from measles in the United States. At the time, no one had perished from measles in 12 years. Now, as a record-setting measles outbreak spreads in 28 states, with the majority of cases in New York, her death shows how preventable diseases can devastate families far outside the communities which choose to delay or decline vaccines.

1109

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

From CDC: "From January 1 to July 3, 2019, 1,109 individual cases of measles have been confirmed in 28 states. This is an increase of 14 cases from the previous week. This is the greatest number of cases reported in the U.S. since 1992 and since measles was declared eliminated in 2000."

At CNN, Jacqueline Howard quotes Dr. Peter Hotez:

"Measles historically is seasonal. We know it peaks in the spring and then declines in the summer. So there is a seasonality to the virus, just like there's a seasonality to influenza," Hotez said, adding that another factor is that children are currently out of school.

"A couple of questions that I'm looking at is: One, what happens when kids come back to school in the fall? Because although measles cases have declined, they haven't disappeared," he said. "I am concerned that we're going to see the uptick again as we move into the fall months -- and then the other question: What happens in 2020? Will we see a big jump in the spring of 2020? In other words, is this peak in the spring of 2019 just the beginning of frequent peaks?"

Generosity of Insurance Mandates

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

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

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

The remainder surely makes up a minority of the autistic population.  

At PLOS ONE, Timothy Callaghan and Steven Sylvester have an article titled "Autism Spectrum Disorder, Politics, and the Generosity of Insurance Mandates in the United States."  The abstract:

The study of Autism Spectrum Disorder (ASD) in the United States has identified a growing prevalence of the disorder across the country, a high economic burden for necessary treatment, and important gaps in insurance for individuals with autism. Confronting these facts, states have moved quickly in recent years to introduce mandates that insurers provide coverage for autism care. This study analyzes these autism insurance mandates and demonstrates that while states have moved swiftly to introduce them, the generosity of the benefits they mandate insurers provide varies dramatically across states. Furthermore, our research finds that controlling for policy need, interest group activity, economic circumstances, the insurance environment, and other factors, the passage of these mandates and differences in their generosity are driven by the ideology of state residents and politicians–with more generous benefits in states with more liberal citizens and increased Democratic control of state government. We conclude by discussing the implications of these findings for the study of health policy, politics, and autism in America.

From the article:

Even as forty-six states took action from 2001–2017 to enact an insurance mandate, the scope of these benefits varies dramatically. A select number of states have mandated generous benefits, but we show that this is far from the norm. Instead, most states limit benefits by either restricting eligibility to individuals under a certain age or by capping the amount that insurance companies must spend to pay for needed behavioral treatments. Thus, our findings suggest that even as states have moved quickly to reform their policies, the number of individuals who are eligible for generous benefits varies dramatically.

Employment in Michigan

In The Politics of Autism, I discuss the employment of adults with autism and other disabilities. Many posts have discussed programs to provide them with training and experience.

Breana Noble at The Detroit News:

Ford Motor Co. was the first employer to team with the Autism Alliance of Michigan nonprofit in 2016 to give job-ready candidates a chance to try out a job and be recruited. Three years later, 17 people are working there in full-time, part-time and contractor positions in Dearborn. Similar programs have been offered at dozens of employers across the state, including DTE Energy Co., General Motors Co. and MotorCity Casino Hotel. They have hired more than 150 workers with autism.
...
In 2016, Ford began a greater effort to increase its diversity around the same time the Autism Alliance of Michigan wanted to create a pipeline to match businesses to workers with autism. FordInclusiveWorks launched that year with four participants in product development who had the chance to try out the job and then go through the company's formal recruitment process. All were hired.

A majority of what the alliance does happens before the employee enters a company, though. It leads candidates through a series of steps to prepare them for the workplace. Its experts go over their resumes and social media and work on communication skills. Business recruiters meet with candidates every month for mock interviews. Candidates take a skills and clinical assessment.

...
In addition to supporting current job seekers, efforts are underway to give high school students with developmental disabilities on-the-job experience. Project Search, an initiative that began at Cincinnati Children’s Hospital Medical Center, has programs at several Metro Detroit employers, including DTE, Blue Cross Blue Shield of Michigan and area health systems.

Measuring Treatment Outcomes: Apples, Oranges, Rutabagas, Nachos

Uncertainty is a major theme of The Politics of Autism. Here is how I start chapter 3:

If we can land a man on the moon, why can’t we cure autism? Frustrated parents may ask that question, remembering that when John F. Kennedy committed the United States to go to the moon, NASA scientists and engineers figured out how to get there. Ever since Neil Armstrong stepped off the lunar module in 1969, politicians have held up the Apollo project as a model for solving all kinds of problems. But autism is not rocket science. Contrary to the usual meaning of that expression, I hardly suggest that autism science is simple; rather, it is more puzzling than rocket science.

When the moon program was getting under way, there was consensus about the fundamental terms and facts. Although the engineering details were challenging, the basic math and physics behind the mission dated back to Isaac Newton. Autism is different. As we have already seen, it is a contested concept with many uncertainties. Just picture an Apollo program in which experts saw different kinds of moons in different parts of the sky and were not quite sure about the laws of motion.

Umberto Provenzani and colleagues have an article at Autism titled  "What Are We Targeting When We Treat Autism Spectrum Disorder? A Systematic Review Of 406 Clinical Trials."  The abstract:

The number of trials aimed at evaluating treatments for autism spectrum disorder has been increasing progressively. However, it is not clear which outcome measures should be used to assess their efficacy, especially for treatments which target core symptoms. The present review aimed to provide a comprehensive overview regarding the outcome measures used in clinical trials for people with autism spectrum disorder. We systematically searched the Web of KnowledgeSM database between 1980 and 2016 to identify published controlled trials investigating the efficacy of interventions in autism spectrum disorder. We included 406 trials in the final database, from which a total of 327 outcome measures were identified. Only seven scales were used in more than 5% of the studies, among which only three measured core symptoms (Autism Diagnostic Observation Schedule, Childhood Autism Rating Scale, and Social Responsiveness Scale). Of note, 69% of the tools were used in the literature only once. Our systematic review has shown that the evaluation of efficacy in intervention trials for autism spectrum disorder relies on heterogeneous and often non-specific tools for this condition. The fragmentation of tools may significantly hamper the comparisons between studies and thus the discovery of effective treatments for autism spectrum disorder. Greater consensus regarding the choice of these measures should be reached.

From the article:

Our findings also suggest that, given the evolving and still unclear phenomenology of ASD, there may be no single tool capable of detecting and assessing changes in symptoms and behaviours. Therefore, in the absence of an overarching consensus regarding reliable standardized measures, the use of multiple instruments (together with the CGI) [Clinical Global Impression] could be recommended. Conversely, the efficacy of treatments on some important domains which are frequently impaired in autistic people (e.g. quality of life) demand further investigation.

Antivaxxers Turn to Homeschooling

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.  Twitter, Facebook, and other social media platforms have helped spread this dangerous myth. The antivaxxers have now caused a  major measles outbreak in New York State.

Alexa St. John and  Melanie Grayce West at WSJ:

Antivaccination groups in New York have been promoting home schooling as a way to circumvent a new state law that eliminates religious-belief exemptions for school vaccination requirements.

The New York Alliance of Vaccine Rights last week hosted a four-hour workshop called Homeschooling 101 in a hotel ballroom in Melville, N.Y., on Long Island. Hundreds of parents attended the event, where the hosts explained academic course requirements, individual home-instruction plans and extracurricular activities for home-schooled students.

Rita Palma, who organized the event, said she hoped to inspire parents to get “really creative” about what to do if vaccination isn’t a choice. She said people are forming closed communities on Facebook to discuss home schooling and exploring cooperative learning centers.

New York is now the fifth state in the country to eliminate religious exemptions for vaccination. According to the state’s department of health, 26,217 students—in public, private and parochial schools, child-care centers and preschools across the state—had religious exemptions to one or more required immunizations in the 2017-2018 school year. Under the new law, children now need to be vaccinated, receive a medical exemption from a doctor or forfeit attending a school. The vast majority, 96% of students in New York, are completely immunized.

Questioning the Term "High-Functioning Autism"

In The Politics of Autism, I write:

Just about everything concerning autism is subject to dispute. What is it? What causes it? How many different kinds of it are there? Who has it? What can we do about it? Is it even the right problem to be thinking about? All of these questions, and many others, are the stuff of bitter political battles. 

Gail Alvares and colleagues have an article at Autism titled "The Misnomer of `High Functioning Autism': Intelligence is an Imprecise Predictor of Functional Abilities at Diagnosis."

‘High functioning autism’ is a term often used for individuals with autism spectrum disorder without an intellectual disability. Over time, this term has become synonymous with expectations of greater functional skills and better long-term outcomes, despite contradictory clinical observations. This study investigated the relationship between adaptive behaviour, cognitive estimates (intelligence quotient) and age at diagnosis in autism spectrum disorder. Participants (n = 2225, 1–18 years of age) were notified at diagnosis to a prospective register and grouped by presence (n = 1041) or absence (n = 1184) of intellectual disability. Functional abilities were reported using the Vineland Adaptive Behaviour Scales. Regression models suggested that intelligence quotient was a weak predictor of Vineland Adaptive Behaviour Scales after controlling for sex. Whereas the intellectual disability group’s adaptive behaviour estimates were close to reported intelligence quotients, Vineland Adaptive Behaviour Scales scores fell significantly below intelligence quotients for children without intellectual disability. The gap between intelligence quotient and Vineland Adaptive Behaviour Scales scores remained large with increasing age at diagnosis for all children. These data indicate that estimates from intelligence quotient alone are an imprecise proxy for functional abilities when diagnosing autism spectrum disorder, particularly for those without intellectual disability. We argue that ‘high functioning autism’ is an inaccurate clinical descriptor when based solely on intelligence quotient demarcations and this term should be abandoned in research and clinical practice.

Citizens as Autism Policy Entrepreneurs

The Politics of Autism includes an extensive discussion of parental activism on issues such as insurance.

Timothy Callaghan and Steven Sylvester have an article at Policy Studies Journal titled "Private Citizens as Policy Entrepreneurs: Evidence from Autism Mandates and Parental Political Mobilization."  The abstract:

Growing bodies of research in the social sciences point to politicians, bureaucratic officials, interest groups, and other actors who serve as policy entrepreneurs. In this paper, we argue that private citizens can also serve a primary role as policy entrepreneurs. To analyze this phenomenon, we investigate the behavior of private citizens and their role in changing state policies surrounding insurance mandates for autism coverage. Using a thematic analysis of focus groups and interviews conducted with individuals active in the push for autism policy change, we demonstrate that private citizens meet all of the requirements identified for policy entrepreneurs in the existing literature. We then investigate when, why, and how these private citizens step forward into the policy process as entrepreneurs. We show that entrepreneurship occurs when private citizens have needed resources, a sense of duty to fix a policy status quo they see as unjust, and a stake in policy change. We conclude by discussing the importance of our findings to the study of public policy and their generalizability beyond autism policy.

From the article:

Although these resources were critical to the engagement of our policy entrepreneurs, our participants also suggested that they were driven into the policy process by a sense of duty to fix a status quo they saw as unjust. There was a universal sentiment among our entrepreneurs that families should not have to foot the bill for needed autism treatments and that the policy status quo was “fundamentally wrong” and that policy change “needs to happen right now.” Our entrepreneurs regularly pointed to a sense of duty given their advantaged socioeconomic status. They “recognized the injustice of what was happening and the injustice of the fact that [we] were very blessed that we had the financial resources and the education to … fight for it.” Another entrepreneur expressed similar sentiments when she said:

It's so wrong. And like the fact that we have two advanced degrees, could mortgage our house, and you know, get treatment for our kid. And then this whole part of the population couldn't. I mean, certainly when we started, I don't think we were thinking, like, “Oh, let's go get everything.” But it just … you have to. Cause … it's so … so wrong.

Some suggested that they “began to be plagued by the thought of, okay, what does your average family do” when confronted with this issue, a question that led to anger and entrepreneurship for many. This sentiment was particularly well conveyed by one mother:

I knew the laws, I knew how to get it done. And then my neighbor couldn't. My sister couldn't. And I was pissed. So it was a combination of, you know, the injustice, anger over the injustice of it, and capacity, because … I have advanced degrees, I had the coverage, I had the experienced, my kid was covered, now let's fix it for other people.

Maternal Occupational Exposure to Solvents

In The Politics of Autism, I discuss various ideas about what causes the condition. Here is just a partial list of correlates, risk factors, and possible causes that have been the subject of serious studies:

• Pesticides;
• Air pollution and proximity to freeways;
• Maternal thyroid issues;
• Autoimmune disorders;
• Induced labor;
• Preterm birth;
• Fever;  
• Birth by cesarean section;
• Anesthesia during cesarean sections;
• Maternal and paternal obesity;
• Maternal diabetes;
• Maternal and paternal age;
• Maternal post-traumatic stress disorder;
• Smoking during pregnancy;
• Antidepressant use during pregnancy;
• Polycystic ovary syndrome.
• Infant opioid withdrawal
• Zinc deficiency
• Processed foods

At Occupational and Environmental Medicine,  Erin C McCanlies and colleagues have an article titled "The CHARGE Study: an Assessment of Parental Occupational Exposures and Autism Spectrum Disorder."

Key messages

What is already known about this subject?

The speed with which the incidence of autism has increased suggests the importance of risk factors other than genetics in the aetiology of autism spectrum disorder (ASD) and, currently, several dozen epidemiologic studies have observed associations with prenatal exposures to environmental chemicals and pollutants. Since occupational exposures often exceed environmental levels, investigation of their role as risk factors for ASD is warranted in the search for potentially modifiable aetiologic agents.

What are the new findings?

Maternal occupational exposure to solvents occurred more often in the parents of children with ASD compared with TD [typically developing] children.

How might this impact on policy or clinical practice in the foreseeable future?

Future research should consider maternal occupational exposures to solvents as a potential risk factors in the aetiology of ASD and focus on identifying specific solvents rather than broad categories of solvents. Larger studies or different types of study designs may help to identify other risk factors in the aetiology of ASD and further clarify the role solvents may have in the risk of ASD.

From the article:

This study indicates that maternal occupational exposure to solvents may be associated with higher rates of ASD in their children. These results should be interpreted with caution given that this association did not remain significant after correcting the P-values for multiple comparisons. However, these results are consistent with earlier reports that have identified solvents as a potential risk factor for ASD.5 9 28 Research in the non-ASD population has found that solvents can be absorbed into the blood via skin or lungs.29 Water-soluble solvents may be cleared out of the body in urine or faeces, but many solvents are retained in organs including the brain. Solvents can also be metabolised into more toxic secondary substances (eg, methyl-butyl ketone, n-hexane) that are associated with a number of neurological effects and changes.29 In infants, solvents have been found to interfere with the glial guidance process which inhibits neuritic outgrowth.30 Infants of mothers who have been exposed to occupational solvents or those who abuse solvents (eg, sniff toluene) show delayed speech and motor function as well as cognitive deficits.12 Although these later studies did not specifically evaluate the effects of solvents and ASD, they do suggest mechanisms by which maternal occupational solvent exposure may interfere with typical brain development and hence be involved in the aetiology of ASD.

1095

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

From CDC:

From January 1 to June 27, 2019, 1,095 individual cases of measles have been confirmed in 28 states. This is an increase of 18 cases from the previous week. This is the greatest number of cases reported in the U.S. since 1992 and since measles was declared eliminated in 2000.

Soumya Karlamangla and Melody Gutierrez at the Los Angeles Times:

In the school year that ended last month, 4,812 kindergartners had obtained medical exemptions from vaccines, a 70% increase from two years ago, when the vaccination law first took effect, according to data from the California Department of Public Health. The data suggest that large concentrations of medical exemptions are being granted to school children in relatively affluent parts of the state, such as Santa Cruz and Sonoma counties.

...
The newly released data analyzed by The Times also show:

• The kindergarten vaccination rate in California dropped to 94.8% in 2018-19 from 95.1% in 2017-18 and 95.6% the previous year
• The school districts with the most medical exemptions were L.A. Unified, Capistrano Unified and San Diego Unified. The rate of medical exemptions in Capistrano Unified — a smaller district in Orange County — was 10 times higher than that of L.A. Unified’s.
• About 1,500 schools in California had kindergarten vaccination rates below 95%.
• At 117 schools, 10% or more of the kindergartners were not immunized because their doctors had excused them from vaccines. At 17 schools, 30% or more of the kindergarten class had medical exemptions on file.
• Overall, .9% of kindergartners had medical exemptions in 2018-19, up from .7% in 2017-18 and .5% the previous year.