Fitzgerald Out at CDC: Acting Director is Pro-Vax

In The Politics of Autism, I discuss the discredited theory that vaccines cause autism.

CNN:

Dr. Brenda Fitzgerald, director of the US Centers for Disease Control and Prevention, resigned Wednesday, a day after Politico reported Fitzgerald's purchase of tobacco stock after she took the position at the nation's top public health agency.

Such an investment is obviously at odds with the mission of the CDC, considering cigarette smoking will result in the deaths of nearly half a million Americans this year. Smoking remains the leading cause of preventable death in the United States.

Dr. Anne Schuchat, principal deputy director of CDC, will serve as acting director.  She served as acting director just befoe Tom Price began his short, ill-fated tenure. Anna Almendrala reported at The Huffington Post:

Before taking over as acting director, Schuchat was principal deputy director of the CDC, a position she held since 2015. But her longest role was leading the CDC’s National Center for Immunization and Respiratory Diseases division from 2006 to 2015. Schuchat led the agency in its polio eradication efforts during this time, and the number of cases worldwide went from 1,979 in 2005 to 74 in 2015.

Schuchat is also vocal against anti-vaccine voices. She’s not afraid to blame the anti-vaccine movement for recent outbreaks of measles in the U.S. and writes studies showing how childhood vaccinations make disease rates plummet. Popular Science magazine dubbed her “America’s anti-anti-science crusader” for her unequivocal stance in support of vaccines and against “fraudulent” and “totally discredited” medical claims about vaccine dangers.

At a 2015 Senate hearing, referred to the "totally discredited" Wakefield study and said "vaccines don't cause autism"

Balovaptan: A Medical Treatment for ASD?

In The Politics of Autism, I discuss the role of the Food and Drug Administration.

Reuters:

Swiss drugmaker Roche said on Monday the U.S. Food and Drug Administration granted its breakthrough therapy designation for Balovaptan to treat autism spectrum disorder (ASD), potentially accelerating its development and approval.

Balovaptan, which may improve social interaction and communication in people with ASD, is being developed by Roche’s Swiss-based pRED research unit and has an expected filing date of after 2020, according to the company’s website.

Autism spectrum disorder has no standard FDA-approved drugs for its core symptoms such as social interaction difficulties, communication challenges and a tendency to engage in repetitive behaviors. Roche said Balovaptan has shown the potential to improve social interaction and communication in people with ASD.

Drop in Overall Unemployment Helps People with Disabilities

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

Julia Horowitz at CNN Money:

In June 2017, Christopher Morris started work as an associate at Ernst & Young.
The 36-year-old is one of 14 people in the professional services firm's "neurodiversity" program, which hires people on the autism spectrum to work on its accounting and analytics projects.

Over the next three years, Ernst & Young plans to brings dozens more people like Morris on board.

"We need the talent wherever we can get it. Whichever way it's packaged. There is a shortage, particularly in our skills areas," said Lori Golden, who is leading the charge at EY to hire more people with disabilities.

It's not just Ernst & Young. With unemployment at a low 4.1%, fewer people are looking for jobs. As a result, many employers are having a hard time finding people qualified to fill the positions they have open.

That's left an opening for people with disabilities, a group that's broadly defined under the Americans With Disabilities Act. In addition to individuals with physical disabilities such as blindness, it also includes people who are struggling with addiction or have epilepsy, to name a few examples.

This demographic has always been underemployed. But Americans with disabilities have posted year-over-year gains in the job market for the past 21 consecutive months, according to an analysis by the Kessler Foundation and the University of New Hampshire.

Shift in Research Priorities

In The Politics of Autism, I discuss the incentive structure facing academic researchers:

This diversity of research agendas is partially a result of uncertainty. Amid the darkness, it might make sense to shine searchlights in all directions. Some of it may also stem from the availability of autism research money at a time of tight science budgets. To put it bluntly, publication-hungry scientists may have an incentive to rebrand marginally-relevant work as autism-related. Describing her study of how experts on sex differences have landed on the “biomedical platform” of autism, science historian Sarah Richardson says they “have begun to link their very basic research -- even if it’s on nematodes [roundworms] -- to frame it as a contribution to autism.”

Liz Pellicano, Will Mandy, Sven Bölte, Aubyn Stahmer, Julie Lounds Taylor, David S Mandell have an editorial in Autism:

Autism research is changing. There is more of it than ever before. In August 2017, the Interagency Autism Coordinating Committee (IACC), the advisory committee that coordinates federal efforts and provides advice to the US government on issues related to autism, recommended that autism-related research funding in the United States should increase further still, doubling by 2020. If this recommendation were successful, US lawmakers would commit an unprecedented amount of funding to autism research. But it is not just the amount of research being commissioned that is being transformed, it is also the kind of research. The IACC now calls for research to address the diagnosis, biology and causes of autism and, critically, efforts to improve services across the lifespan. This latter focus is especially notable. While most current autism research addresses the underlying biology and causes of autism (Pellicano et al.,2013, 2014), which arguably ‘leads to significant future advances and opportunities’, the IACC (2017)has called for a ‘paradigm shift in how we approach autism’ (p. vi), to include research that will have a more immediate and direct impact on the daily lives of autistic people and their families, especially related to services and supports, and with underserved populations.

This revised approach to autism – to acknowledge the need to address the everyday realities of autism – is very much welcomed. It is the result, in part, of increased engagement with autistic people and their allies, who have repeatedly called for research that recognises the needs of autistic people1 living in the here-and-now (Pellicano et al., 2013, 2014). Indeed, it is increasingly acknowledged that for autism research to adequately address the issues facing autistic people and their allies, the nature of research agendas must be shaped together by researchers and community members (e.g. Bölte, 2017; Cusack, 2017; Krahn and Fenton, 2012; Pellicano et al., 2014).

Movement on Insurance Age Caps

The Politics of Autism includes an extensive discussion of insurance 

From Autism Speaks:

On Wednesday, January 31, 2018 at 10:00am, the South Carolina Senate Banking and Insurance Subcommittee will hear the Ryan's Law expansion bill (H. 3790). The hearing will take place in Committee Room 407 in the Gressette Senate Office Building (1101 Pendleton Street, Columbia, SC 29201). Families of individuals with autism are invited to attend and join our Autism Speaks staff.

Under Ryan's Law, which passed in 2007, large group and state employee insurance plans are required to cover treatement for autism, including up to $53,000 per year of Applied Behavior Analysis, up to the age of 16. House Bill 3790 would remove the age and dollar caps, as well as make the coverage available in individual and small group insurance plans.

Please join us on Wednesday as we work toward making treatment accessible for all South Carolinians with autism!

- Lorri Unumb and the Autism Speaks Advocacy Team
lorri.unumb@autismspeaks.org

A January 16 report from AP:

Three insurance companies in Mississippi have agreed to provide more extensive coverage of services for people with autism and other developmental disorders.

State law requires coverage of applied behavior analysis therapy for children through age 8.

Insurance Commissioner Mike Chaney announced Tuesday that three insurers are removing the age cap and will provide services for people older than 8. They are BlueCross BlueShield of Mississippi, UnitedHealthcare of Mississippi and Magnolia Health.

Ohio Bill Would Forbid Transplant Discrimination

In The Politics of Autism, I discuss the  civil rights of people with autism and other disabilities. 

People with autism and other disabilities face discrimination when they need organ transplants.

At WKEF/WRGT, Kelly May reports on Jackie Ward, a Shelby County mom who is pushing to change Ohio law after her daughter was denied a heart transplant, doctors said, because of her Down Syndrome.

Currently, Ohio law is silent on the issue, there's nothing that says either way that developmental disabilities can play a role in deciding who gets an organ transplant.

House Bill 332 would make it illegal to make developmental disabilities a deciding factor.

...
i n Ohio there's no law that says people with developmental disabilities should have equal medical access to organ transplant.

Miamisburg Representative Niraj Antani (R - Directict 42) is a primary sponsor of the bill and said, "They're told that they won't be able to follow the post operation regimen, their body won’t be able to handle it, or that its implied that their life is less worthy and that's wrong."

The bill passed unanimously in Ohio's House of Representatives this week.

"To most people it's shocking that this is even something that we have to pass a law about," Jackie said.

Thankfully, after Ellie was denied the transplant, she defied the odds and survived the risky heart surgery, but Jackie says that doesn't mean she won't need a transplant in the future.

RAISE Family Caregivers Act

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. 

From Senator Susan Collins (R-ME):

U.S. Senators Susan Collins (R-ME) and Tammy Baldwin (D-WI) are applauding yesterday’s Signing of the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act into law. This bipartisan law establishes a national strategy to support family caregivers across the country.

The RAISE Family Caregivers Act directs the Secretary of Health and Human Services to develop and sustain a national strategy to recognize and support the more than 40 million family caregivers in the United States. The bipartisan law is endorsed by over 60 aging and disability organizations, including the AARP, the Alzheimer’s Association, the Michael J. Fox Foundation and the Arc.

...

“Signing the RAISE Family Caregivers Act into law is an important step in supporting the nation’s 40 million family caregivers who take care of loved ones, many of them elderly, often with very little support or resources available to them,” said AARP CEO Jo Ann Jenkins. “With the rapid growth of our aging population, it’s reasonable to say that many of us will end up either being a caregiver, or needing one. As a result, the potential benefits of this legislation are both critical and wide reaching.”

The RAISE Family Caregivers Act (S. 1028) was supported by a broad bipartisan coalition of cosponsors including Senators Lisa Murkowski (R-AK), Michael Bennet (D-CO), Shelley Moore Capito (R-WV), Debbie Stabenow (D-MI), Chris Coons (D-DE), Joe Donnelly (D-IN), Elizabeth Warren (D-MA), Amy Klobuchar (D-MN), Bill Nelson (D-FL), Jeff Merkley (D-OR), Jon Tester (D-MT), Jeanne Shaheen (D-NH), and Angus King (I-ME).

Important Facts on Family Caregivers:

• 40 million family caregivers in the United States provided an estimated $470 billion in uncompensated long-term care in 2013.
• Many caregivers are putting their own health at risk since caregivers experience high levels of stress and have a greater incidence of chronic conditions like heart disease, cancer, and depression.
• Every day, 10,000 baby boomers turn 65, and as many as 90 percent of them have one or more chronic health conditions.
• Americans 85 and older are the fastest growing segment of the aging population. This population is most at risk for multiple and interacting health problems that can lead to disability and the need for round-the-clock care.

This bill directs the Department of Health and Human Services (HHS) to develop, maintain, and periodically update a National Family Caregiving Strategy. HHS shall convene a Family Caregiving Advisory Council to advise it on recognizing and supporting family caregivers.

Suspending Autistic Preschoolers

In The Politics of Autism, I write about  education and the Individuals with Disabilities Education Act.

In a report for the Center for American Progress,Cristina Novoa and Rasheed Malik find:

New data reveal that although children with disabilities represent a relatively small proportion of the population of children ages 3 to 5 attending preschool, they make up a disproportionately large share of suspensions and expulsions. Children with any disability or social-emotional challenge make up only 13 percent of the preschool population, but they constitute 75 percent of all early suspensions and expulsions. A similar pattern of overrepresentation can be found across all disability conditions.

And preschoolers with ASD are 2 percent of the population but 17 percent of suspensions and expulsions.

Autism, France, and Psychoanalysis

In The Politics of Autism, I describe the need for comparative perspectives on the issue. In The Independent, Marta Zaraska writes:

France lags about four decades behind countries such as the United States and the United Kingdom when it comes to diagnosing and treating autism, says Danièle Langloys, president of the advocacy group Autisme France. ... One 2015 study pegs the prevalence of autism in France at 0.36 per cent, well below the 1 per cent reported in the UK and roughly 2.5 per cent reported in the US. Among children who are diagnosed with autism, only about one in five attends a mainstream school.

The French government has been taking small remedial steps but huge problems remain. Psychoanalysis dominates psychological treatment in France, but it does not work for autism.

Psychoanalysis is a “dictatorship of thought” in France that, over the past 40 years, has become part of the national culture, Langloys says. In the 1950s, there were only about 150 psychoanalysts in France, compared with thousands in the US. By the early 21st century, though, the number in France had soared to about 10,000 – with a sharp increase during the late 1960s connected to a rise in anti-establishment politics.

...

In a 2012 survey of 1,000 French adults, 22 per cent claimed that some kinds of parent-child interactions can cause autism, and another 23 per cent said the condition can result from stressful life events. These disproven ideas are also common among psychoanalysts in France. “There are still groups that resist scientific information on autism and who continue saying that with a developmental and behavioural approach, you are doing ‘dressage’ of children,” or training them like horses, Rogé says. “They say [psychoanalysis] is a very humanist, flexible model, but I think it resembles more a sect, a religion, because it is based on faith and not on scientific facts.”

 In 2011, a large, systematic meta-analysis of early interventions for autism found no evidence supporting a psychoanalytic approach for the condition. Yet if French parents oppose it, they can face dire consequences, including the forced removal of their children to institutions or foster homes. Langloys says social workers can label a family as troublesome just for seeking out a second opinion. “Social workers know nothing but psychoanalysis, so for them the mother is always too fused or too cold,” she says. To them, she says, “it’s normal to take away her children.” Her association has counted several hundred cases of children being separated from their parents in the past 15 years. In 2014, Autisme France began offering its members access to legal aid services to help families facing court proceedings to remove their children

HCBS

 The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for people with intellectual and developmental disabilities.  Home and Community-Based Services (HCBS) are particularly important.

Molly O'Malley Watts and MaryBeth Musumeci report at the Kaiser Family Foundation:Follow @mmusumec on Twitter

Nearly 3.2 million people received HCBS through one of the three main Medicaid programs in 2014, a five percent increase from the prior year. Most of the HCBS enrollment increase from 2013 to 2014 is due to a 27 percent increase in home health state plan services. Enrollment growth in Section 1915 (c) waivers was small (2%), while enrollment in personal care state plan services declined by six percent. Section 1915 (c) waivers continue to comprise half of total Medicaid HCBS enrollment across the three main programs. Home health state plan services makes up just over a quarter of total HCBS enrollment, while personal care state plan services account for just under a quarter of total HCBS enrollment. Seniors and adults with physical disabilities comprised over half (54%) of all Section 1915 (c) waiver enrollment, followed by people with intellectual or developmental disabilities (I/DD, 42%).

...
Total Medicaid spending on HCBS across the three main programs was $58.5 billion in 2014, an increase of three percent from the prior year. Spending growth was led by home health state plan services (11%), followed by a 10 percent increase in personal care state plan services, and a one percent increase in Section 1915 (c) waiver services. Nearly three-quarters (72%) of Medicaid HCBS spending went to Section 1915 (c) waivers. Section 1915 (c) waiver services targeted to adults with I/DD accounted for 70 percent of all Section 1915 (c) waiver spending, while waiver services targeted to seniors and nonelderly adults with physical disabilities was 27 percent of waiver spending.

Medicaid HCBS spending per enrollee averaged $18,458 nationally in 2014, with substantial state-level variation. For example, five states spent less than $10,000 per enrollee while seven states spent more than $30,000 per enrollee. Higher per enrollee spending in some states is at least in part due to the transfer of most HCBS waiver populations to Section 1115 MLTSS programs, leaving all or most enrollment in the three traditional HCBS programs comprised of people with I/DD, who may have more intensive needs and therefore higher spending compared to other target populations. Per enrollee spending also varied across the three main HCBS programs, ranging from $7,570 for home health services to $26,563 for Section 1915 (c) waiver services and reflecting differences in the type and extent of services provided by the different programs.

...
Three-quarters of states reported Section 1915 (c) or Section 1115 HCBS waiver waiting lists in 2016, totaling 656,195 individuals. The average waiting time across all waivers with waiting lists was 23 months, with substantial variation by waiver population, ranging from five months for HIV/AIDS waivers to 48 months for waivers targeted to people with I/DD. Eighty-seven percent of waivers with waiting lists offered non-waiver Medicaid services to individuals who were waiting for waiver services.

California's Troubled System for Infants and Toddlers with Special Needs

In The Politics of Autism, I write:

For children under three, the first stop is an Individualized Family Service Plan (IFSP), which maps out Early Intervention (EI). After age three, children get an Individualized Education Program (IEP) from their local education agency (LEA), that is, their school system. The IEP explains how children will receive a free appropriate public education (FAPE) in the least restrictive environment (LRE) The program may include speech therapy (ST), occupational therapy (OT), physical therapy (PT), adapted physical education (APE), and applied behavior analysis (ABA) interventions including discrete trial training (DTT). Depending on which state they live in, official agencies or insurance companies may also subsidize services from NPAs (nonpublic agencies). As attorney Gary S. Mayerson observes drily: “Given the confusion that all these unhelpful acronyms are causing for parents and professionals, it is not without irony that autism is associated with communication dysfunction.”

California's Legislative Analyst Office has a report titled "Evaluating California's System for Serving Infants and Toddlers With Special Needs."  

Tables in the report show that California ranks 46th among the 50 states in meeting the initial service plan deadline and 47th in meeting the begin services deadline. 47th among the 50 states in notifying schools about impending transitions, 44th in holding planning conferences, and 47th in developing transition plans.

The executive summary:

California Serves More Than 40,000 Infants and Toddlers With Special Needs. In 2015‑16, California provided early intervention services to about 41,000 infants and toddlers with special needs. These infants and toddlers either have a disability (such as a visual or hearing impairment) or a significant developmental delay (such as not beginning to speak or walk when expected). The state’s early intervention system provides these infants and toddlers with services such as speech therapy and home visits focused on helping parents promote their child’s development. Parts of California’s early intervention system date back more than 35 years. During this time, the state has not regularly, or even periodically, evaluated this system. In this report, we provide a comprehensive assessment of the system.

Background

Services Are Provided Through Three Programs. California’s plan for serving infants and toddlers with special needs involves three programs operated by two types of local agencies.

• Regional Centers’ Early Start Program. Regional centers are the main provider of early intervention services in California. These centers are nonprofit agencies overseen by the Department of Developmental Services. In addition to their original mission—coordinating community‑based services for adults and school‑aged children with developmental disabilities—regional centers coordinate services for about 33,500 infants and toddlers with special needs.
• Schools’ Legacy Program. The state also provides early intervention funding for 97 schools that have a long legacy of providing early intervention services. The state funds these schools to serve the same number of infants and toddlers as they served when they first received state funding back in the 1980s—about 5,000.
• Schools’ Hearing, Visual, and Orthopedic Impairments (HVO) Program. Although regional centers are required to serve most infants and toddlers not served in the school legacy program, schools are required to serve infants and toddlers who have solely HVO impairments and no other eligible condition. Schools currently serve about 2,500 infants and toddlers with HVO impairments, of which about 1,500 are served in the school HVO program and 1,000 are served in the legacy program.

State Provides Most Funding for Early Intervention Services. Although services are required as a condition for receiving a federal early intervention grant, this grant covers a relatively small portion (about $50 million, or 10 percent) of associated service costs. State funding covers the bulk of service costs (about $370 million, or 77 percent), with other fund sources (such as health insurance billing) covering the remainder of costs (about $60 million, or 13 percent).

Schools and Regional Centers Provide Similar Services Using Different Delivery Models. Although federal law outlines a general process both schools and regional centers must follow in serving infants and toddlers with special needs, the two types of agencies use notably different service delivery models. Specifically, schools tend to employ their own service providers (such as speech therapists), whereas regional centers coordinate services offered by independent service providers.

Assessment

Important Differences Between Schools and Regional Centers. Although considerable overlap likely exists in the populations served by the two types of agencies, schools spend much more per child than regional centers (about $16,000 as compared to about $10,000). Additionally, regional centers tend to offer parents more choice among service providers. Finally, regional centers are better equipped to help parents access public or private insurance coverage.

California’s Bifurcated System Likely Causes Service Delays. Because California’s system is divided between three programs and two types of agencies, parents and agency staff are frequently confused as to which program is responsible for serving each child. Moreover, California lags nearly all states in providing timely services. Many infants and toddlers wait weeks or even months before being placed in the appropriate program, during which time they do not receive services. California also performs worse than other states in facilitating transition from early intervention services to preschool special education. Based upon our conversations with stakeholders, we believe these preschool delays likely result from some regional centers struggling to coordinate with schools.

Recommendations

Unify All Services Under Regional Centers. Given the shortcomings of California’s bifurcated system, we recommend the state unify the system under one lead agency. Compared to California’s existing system, a unified system likely would provide more timely services and provide more equal funding for each child served. Given how the state’s early intervention system has evolved over the past 35 years, we believe regional centers currently are better positioned than schools to serve in this lead capacity. Specifically, regional centers already serve the vast majority of infants and toddlers with special needs, provide more parental choice, and are better equipped to access public and private insurance billing.

Establish a Transition Plan. We recommend the state develop a plan to help ensure continuity of services for families during the transition to a unified system. As part of the transition plan, we recommend the state allow regional centers some flexibility in contracting with schools to continue serving some infants and toddlers. We also recommend the regional centers develop transition plans for serving infants and toddlers who are deaf or hard of hearing. In addition, we recommend the state require regional centers to follow established best practices to ensure smooth transitions to preschool.

New System Would Produce State Savings. Though we recommend transitioning to a new system for the direct benefits it would have for infants and toddlers with special needs, a unified system under the regional centers also would generate state savings. We estimate savings in the range of $5 million to $35 million. The state could repurpose these savings for any budget priority or use them to expand or enhance early intervention services (for example, by conducting more outreach or raising associated reimbursement rates).

Autism Parenthood, Medicaid, and Employability

The Politics of Autism includes a discussion of parent experiences.  Back in 2004, Jane Gross wrote in The New York Times: "With rare exceptions, no disability claims more parental time and energy than autism because teaching an autistic child even simple tasks is labor intensive, and managing challenging behavior requires vigilance."

At Vox, autism parent Trish Florence explains a problem with Medicaid work requirements.

There is a false narrative that people on Medicaid or SNAP (food stamps) are collecting these benefits out of choice rather than necessity. I am on Medicaid because being a caregiver to my kids makes employment a huge challenge. I can easily get a job. I cannot keep a job.

In addition to the challenges of getting through a school week, there are appointments with therapists and psychiatrists. There are IEP (individualized education plan) meetings with teachers, case managers, school psychologists, and administrators. There are phone calls from teachers, staffings and conferences. All this eats away at my employability.

Businesses value workers who are predictable in scheduling requirements. Even jobsI’ve taken under an explicit understanding of my situation have been tough to keep. It would only take a few weeks of teacher phone calls and leaving work to handle a meltdown before the disapproving looks and casual critical comments started. As much as a manager may understand my unique needs, many businesses find it hard to function without reliable employees. My situation renders me unreliable, through no fault of my own, and so I become essentially unemployable.

Problems with Group Homes

In The Politics of Autism, I discuss the civil rights of people with autism and other disabilities. 

From the US Department of Health and Human Services:

This joint report is issued by the U.S. Department of Health and Human Services, Office of Inspector General (OIG); Administration for Community Living (ACL); and Office for Civil Rights (OCR) to help improve the health, safety, and respect for the civil rights of individuals living in group homes. The joint report provides suggested model practices to the Centers for Medicare & Medicaid Services (CMS) and States for comprehensive compliance oversight of group homes to help ensure better health and safety outcomes. In addition, the Joint Report provides suggestions for how CMS can assist States when serious health and safety issues arise that require immediate attention.
...

In OIG’s audits of Connecticut, Massachusetts, and Maine, the State agencies did not comply with Federal waiver and State requirements for reporting and monitoring critical incidents involving Medicaid beneficiaries with developmental disabilities. These audits found that these State agencies:

• failed to ensure that group homes reported all critical incidents,
• failed to ensure that all critical incidents reported by group homes were properly recorded,
• failed to ensure that group homes always reported incidents at the correct severity level,
• failed to ensure that all data on critical incidents were collected and reviewed, and
• failed to ensure that reasonable suspicions of abuse or neglect were properly reported.

...
Our suggestions for ensuring group-home beneficiary health and safety involve four key
compliance oversight components:

1. reliable incident management and investigation processes;
2. audit protocols that ensure compliance with reporting, review, and response requirements;
3. effective mortality reviews of unexpected deaths; and
4. quality assurance mechanisms that ensure the delivery and fiscal integrity of appropriate community-based services.

Exclusion

In The Politics of Autism, I discuss the civil rights of people with autism and other disabilities.

At The New York Times, Kwame Anthony Appiah writes that a rationale for affirmative action is to undo a history of unjust exclusion.

Does this apply to autism-spectrum disorder? Drawing boundaries around autism is not easy, because it’s a complex category with disputed criteria, but the C.D.C. estimates that one in 68 schoolchildren qualifies. (This includes people with “pervasive developmental disorder not otherwise specified.”) The incidence in older cohorts was much lower, in part because of shifts in definition and reporting practices. What’s the incidence among full-time academics? Nobody knows. Some people think that especially in math, science and engineering faculties, people with “on the spectrum” traits aren’t rare, and research by the Cambridge psychologist Simon Baron-Cohen lends support to this. Certainly some qualities of mind popularly associated with so-called high-functioning autism — focus, computational ability, a retentive memory, a preference for rational argument over feeling — are useful in most academic fields. What we don’t have is evidence that people with autism-spectrum traits have been excluded from them.

He is suggesting that we lack evidence of exclusion from specific fields.   But he overlooks the big picture.  Prior to the 1975 Education for All Handicapped Children Act (later renamed the Individuals with Disabilities Education Act), schools could exclude autistic people completely.  If there were very few ASD applicants in the past, perhaps the reason is that school systems kept them from even getting high school diplomas.

"Communication Impediment" on Texas Driver Licenses

In The Politics of Autism, I write:

[M]any police departments have trained officers and other first responders how to spot signs of autism and respond accordingly. Some organizations have also published identification cards that ASD adults can carry in order to defuse potential conflicts. Virginia provides for an autism designation on driver licenses and other state-issued identification cards. Once again, however, the dilemma of difference comes into play. One autistic Virginian worries: “Great, so if I get into an accident, who’s the cop going to believe, the guy with the autistic label or the guy without it?” Clinical psychologist Michael Oberschneider is concerned about the understanding level of first responders: “I think many people still think of Rain Man or, more recently, the Sandy Hook Shooter, when they think of autism even though very few people on the autistic spectrum are savants or are homicidal and dangerous.”

  Wes Rapaport reports at KMAC-TV:

A new public service announcement was unveiled urging drivers with autism to consider applying for a note on their driver’s license that informs law enforcement about potential interaction challenges. The video message informs Texans about the “communication impediment” restriction code.

Samuel Allen, who is on the autism spectrum, said having the marker on his driver’s license feels “like a big safety net,” and makes him more comfortable when he gets in his car.

“If I showed [it] to the officer, they are going to know that I have autism or some kind of impediment that will keep me from communicating properly with the officer,” Allen explained.

Legislation was passed in the last session that took effect in September, allowing brochures and posters highlighting the “communication impediment” code, in large part due to work done by Aspergers101, which Allen’s mother Jennifer founded.
...
In order to qualify, drivers must complete a Physicians Statement Form (DL101) and submit it with a new driver’s license application to your local driver’s license office. Registration is optional. The Texas Governor’s Committee on People with Disabilities (GCPD) has worked alongside Aspergers101 and the Texas Department of Public Safety to include the “communication impediment” phrase on licenses of drivers who qualify.

Autism Society on Medicaid Work Requirements

The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for people with intellectual and developmental disabilities. 

From the Autism Society:

Bethesda, Maryland, January 12, 2018 — Yesterday, the Centers for Medicare & Medicaid Services (CMS) announced that states may block some low-income adults from getting Medicaid coverage if they’re not working or participating in work-related activities. The Autism Society of America strongly opposes this fundamental change to the Medicaid program.

“Individuals on Medicaid who are able to work want to work. We have to address Medicaid costs in ways other than blaming the recipient,” said Scott Badesch, Autism Society of America President/CEO. “We have to do so in a passionate way that doesn’t have the potential to harm or punish a person because he or she has a disability.”

While many individuals with autism are eligible for Medicaid through the disability pathway, others receive Medicaid through the Affordable Care Act’s 2010 expansion to low-income individuals, Medicaid buy-in programs, or other eligibility categories.

CMS claims that work requirements will only apply to “able-bodied adults” and will not apply to those who are “medically fragile.” Most people with autism are physically able and can and do work. In fact, most Medicaid beneficiaries who can work are already working. According to a Kaiser Family Foundation issue brief, nearly 8 in 10 non-disabled adults with Medicaid coverage live in working families, and most are working themselves. These include many individuals on the autism spectrum who have difficulty finding jobs that provide adequate health benefits or that pay sufficient wages to pay for insurance on the marketplace. Some individuals go in and out of work or work part-time and would have difficulty going to work without health insurance.

Autism Society on CHIP

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.

From the Autism Society:

Over 100 days have passed since Congress let funding for the Children’s Health Insurance Program (CHIP) expire, creating uncertainty for families across the country who depend on the program for health coverage. Lawmakers agreed to a short-term extension late last month as part of a plan to keep the government open, but that  agreement is set to expire next week. The Congressional Budget Office (CBO) estimates a bipartisan, bicameral extension proposal currently under consideration, the KIDS Act (S.1827), will save the government $6 billion over a 10 year period. Unfortunately, partisan politics continues to wreak havoc on the process.

Meanwhile, many states are already issuing termination notices to program beneficiaries worried about the threat of losing access to care. Without a permanent agreement, states will exhaust CHIP funding resources leaving 9 million low and middle-income children nationwide, many of whom live with autism and other disabilities, uninsured.

Please contact your senators and representatives (202-224-3121) today and urge them to #ExtendCHIP. Each day CHIP reauthorization remains unresolved threatens essential health coverage for children nationwide.

Update from Dr. Pan

In The Politics of Autism, I discuss the discredited theory that vaccines cause autism.

In Pediatrics, Dr. Richard Pan, a California state senator, writes:

In California, AB2109, which reduced nonmedical exemptions for the first time in over a decade from 3.15% to 2.5% in 1 year, did not restore community immunity. The 2015 measles outbreak, beginning at Disneyland, spread across California and the country, reminding the public they were no longer safe from measles. Parents demanded action, and I authored SB277, abolishing nonmedical exemptions, which became law despite vociferous, well-funded opposition by antivaccine groups. In SB277’s first year of implementation, California’s kindergarten class achieved a vaccination rate of 96% through educational and public health efforts to increase public awareness and improve compliance with state vaccination laws.5 Further evaluation is needed to fully determine the success of SB277; however, numerous pediatricians have informed me that they now need to spend less time persuading families to vaccinate their children, but there are also reports of some physicians monetizing their license by selling medical exemptions.6

Thus, vaccination policy should not only address barriers to nonmedical exemptions but also address medical exemptions and the role of antivaccine groups in endangering public safety. Standards of care for granting medical exemptions must be clearly defined by the medical profession, and public health authorities should review medical exemptions to ensure these standards are met. Organizations that set professional standards (including certification boards, medical specialty societies, and licensing bodies) should sanction physicians who seek profit from unprofessional conduct that undermines public health and endangers children and communities. Antivaccine physicians tout these credentials to gain credibility with parents. In addition, policymakers need to establish consequences for people profiting from spreading misinformation that enables the spread of disease. Half of all Twitter posts about vaccines contain antivaccine beliefs.7 Just this year in Minnesota, antivaccine groups targeted a community, causing a significant drop in vaccination rates.8The resulting measles outbreak exposed >8000 people, sickened 79 (of which 73 were <10 22.="" a="" and="" hospitalized="" href="http://pediatrics.aappublications.org/content/141/1/e20173449#ref-9" old="" years="">9

Most importantly, pediatricians need to build the political will to pass effective vaccine policy. Antivaccine groups are organized and well funded, and they resort to intimidation and threats to suppress proscience advocacy on social media10 and in legislatures. To create the political will to pass SB277, we organized proscience parents to lead a broad coalition of not only physicians and public health advocates but also education, business, labor, and local government groups. Educating the public that vaccines are safe and effective is not enough. To protect our children and communities, child health advocates must organize proscience parents who care about public safety in their community to campaign for laws to restore community immunity. Vaccines work. Every child needs community immunity. For our children’s safety, we must fight back.

The Autism Paradox and the Dilemma of Difference

In The Politics of Autism, I write:

But what is equal treatment? This question raises the “dilemma of difference,” as legal scholar Martha Minow explains. “When does treating people differently emphasize their differences and stigmatize or hinder them on that basis? And when does treating people the same become insensitive to theirdifference and likely to stigmatize or hinder them on that basis?”[i]

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[i] Martha Minow, Making All the Difference (Ithaca: Cornell University Press, 1990), 20.

At Aeon, Bonnie Evans writes: 

The diagnosis gained a foothold at the end of the 20th century not only because it ensured special educational services. It also slotted neatly into new models of social and economic liberalism in the 1980s and ’90s that aspired to dismantle systems of social welfare. Neoliberalism has arguably led to the ‘death of the social’, as the British sociologist Nikolas Rose noted in 1996, because it encouraged individuals to engage in a market for welfare products in order to boost their own advantage. In the case of autism, the diagnosis protected certain people from the mass demolition of social welfare systems in the 1980s.

It should be no surprise, then, that the most unwavering support for the autism diagnosis occurred under the UK prime minister Margaret Thatcher and the US president Ronald Reagan. It provided a kind of protection for citizens who were considered ‘impaired’ in their social function, and thus entitled to support in a way that others were not. In other words, autism as we know it today grew up as a kind of resistance to a neoliberal agenda, a tool for sheltering certain people from the growing challenges of global capitalism. And in the years since, it has become an important means of affirming identity.
...
Is there really an autism paradox? Or is this actually a paradox of human difference, and of what it means to delineate human types while also offering people the best opportunity to thrive. If we are to think creatively about how to identify difference without stigmatising it, it pays to think historically about how autism research got us to this point. Such history offers a rather humbling lesson: that it might very well be impossible to measure, classify and quantify an aspect of human psychology, without also muting attempts to tell the story differently.

Department of Education Finds Texas in Violation of IDEA

In The Politics of Autism, I discuss special education.  Some states do a reasonably good job, but Texas has not been one of them. A 2016 Houston Chronicle investigation revealed that tens of thousands of disabled students  were refused access to services because of a de-facto enrollment cap.

Christina Samuels at Education Week:

The U.S. Department of Education found that Texas violated the Individuals With Disabilities Education Act through a policy—recently rescinded—that subjected school districts to additional state scrutiny if their special education enrollment percentage went above 8.5 percent.

The office of special education programs on Thursday released a letter to state education chief Mike Morath as well as the results of a monitoring report. OSEP outlined several corrective actions the state must take, including:

• Finding and testing students who should have been referred for evaluation but were not;
• a plan to provide guidance to districts about their responsibilities under special education law; and,
• a plan for monitoring. OSEP said that it would work with the state, which is still recovering from Hurricane Harvey, on a mutually-agreeable timeline.

Defense Department Funds Research on Cannabis and Autism

In the Politics of Autism, I discuss funding of autism research:

Bureaucracies other than NIH came into play – even the Department of Defense. Starting with the 2007 defense appropriations bill, the Pentagon’s Office of the Congressionally Directed Medical Research Programs has included the Autism Research Program. Between fiscal years 2008 and 2012, NIH and ten other federal agencies awarded $1.2 billion to fund autism research projects.[i] In the meantime, private organizations such as the Simons Foundation and Autism Speaks also spent millions on autism science.[ii]

[i] U.S. Government Accountability Office, “Federal Autism Activities: Better Data and More Coordination Needed to Help Avoid the Potential for Unnecessary Duplication,” GAO 14-16, November 2013.  Online: http://www.gao.gov/assets/660/659147.pdf.[ii] U.S. Department of Health and Human Services, Interagency Autism Coordinating Committee, “2010 Autism Spectrum  Disorder Research Portfolio Analysis Report,” July 2012, p. 53. Online: https://iacc.hhs.gov/portfolio-analysis/2010/2010_portfolio_analysis.pdf.

A release from Montefiore Health System:

The Department of Defense (DOD) has awarded $1.3 million to fund a clinical trial at Montefiore Health System that will examine the effect of a cannabis compound called Cannabidivarin (CBDV) on irritability and repetitive behaviors in children with autism spectrum disorder (ASD). These characteristics are common in children with ASD and it is thought that the non-psychoactive and safe compound CBDV may be an effective way to address behaviors such as aggression, self-injurious behavior and tantrums.

One in 68 children has ASD. In addition to irritability and repetitive behaviors, such as rocking and hand-flapping, these children also have problems communicating. These symptoms are believed to be caused by underlying mechanisms in the brain. Since founding the Autism and Obsessive Compulsive Spectrum Program in 2009, Eric Hollander, M.D., director, Autism and Obsessive Compulsive Spectrum Program and Anxiety and Depression Program at Montefiore and Albert Einstein College of Medicine, and professor of psychiatry and behavioral sciences at Einstein, has conducted numerous clinical trials investigating the use of a variety of compounds and treatments to target these common, but challenging behaviors.

“The behavioral problems associated with ASD can cause significant burdens to children and their families,” said Dr. Hollander. “There are few medications available to treat ASD and current treatment options have substantial side effects. We are hoping that CBDV will prove to be an effective method for managing disruptive and impulsive behaviors in patients with ASD, while also targeting the mechanisms in the brain that cause the behaviors.”

The DOD spends millions of dollars on medical research every year through Congressionally Directed Medical Research Programs. The goal of the DOD is to support groundbreaking research that could help members of the military and their families. With so many children and families affected by ASD, the DOD recognizes the need for new and effective treatment methods. At Montefiore, the DOD grant will fund a phase two double-blind, randomized treatment trial where children with ASD aged five to 18 years old will receive either a CBDV pill or a placebo, twice daily over 12 weeks. Participants’ moods and behaviors will be measured on a standard behavioral checklist prior to and after the 12 week treatment to determine if CBDV improved both social and cognitive functioning, as it has been shown to do in animal models.

“The repetitive features of ASD are also common characteristics of a variety of other compulsive disorders, including Obsessive Compulsive Disorder and Body Dysmorphic Disorder,” said Dr. Hollander. “The overarching goal of our work is to discover new ways to target the underlying causes of all of these conditions, ease the associated symptoms and ultimately improve quality of life for many, many people.”

Dr. Hollander has dedicated his career to investigating the root causes of obsessive-compulsive and related disorders. He has more than 28 years of clinical and translational research experience, having been principal investigator on several federal grants and authored hundreds of research papers.