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Tuesday, January 23, 2018

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.

Monday, January 22, 2018

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

Sunday, January 21, 2018


 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:
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.

Saturday, January 20, 2018

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.
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.
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.
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).

Friday, January 19, 2018

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.

Thursday, January 18, 2018

Problems with Group Homes

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

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.

Wednesday, January 17, 2018


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.

Tuesday, January 16, 2018

"Communication Impediment" on Texas Driver Licenses

[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.

Monday, January 15, 2018

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.

Sunday, January 14, 2018

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.
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="" 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.

Saturday, January 13, 2018

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]

[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.

Friday, January 12, 2018

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.

Thursday, January 11, 2018

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:[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:

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.

Wednesday, January 10, 2018


In The Politics of Autism, I look at the discredited notion that vaccines cause autismPrevious posts on this blog discussed Oprah Winfrey's role in spreading this idea.  Her well-received speech at the Golden Globes has sparked talk of a presidential run, which raises the issue of her antivax connection.

Megan Jula at Mother Jones:
Winfrey’s role in this controversy dates back to 2007, when she brought Jenny McCarthy, the Playboy model and actress, onto her show to talk about autism. McCarthy’s young son, Evan, had suffered a series of seizures at two-and-a-half years old and was later diagnosed with autism. McCarthy was adamant that the MMR vaccination Evan received as a baby caused his autism. On the show, McCarthy told Oprah she had been instinctually uncomfortable with allowing the doctor to give her son the vaccine. “I said to the doctor, I have a very bad feeling about this shot,” McCarthy recounted. “This is the autism shot, isn’t it?”
On the show, McCarthy’s claims went virtually unchallenged. Winfrey praised McCarthy as a “mother warrior” and plugged her book Louder Than Words: A Mother’s Journey in Healing Autism, which inaccurately suggests childhood vaccinations contribute to autism. Winfrey did read a brief statement from the Centers for Disease Control and Prevention, which said there was no scientific evidence of a connection and that scientists were continuing to study the causes of autism. “It is important to remember, vaccines protect and save lives. Vaccines protect infants, children and adults from the unnecessary harm and premature death caused by vaccine-preventable diseases,” the CDC statement concluded. But McCarthy had the final word. “My science is named Evan, and he’s at home,” she said. “That’s my science.
This wasn’t the first time Winfrey’s audience had been presented with the vaccines-autism theory. A few months before McCarthy’s appearance, Katie Wright, whose son has autism, said on the show, “The vaccine connection has not been refuted at all. In fact, we give 37 vaccines to babies under the age of 18 months. Nobody has shown that that’s safe, a wise idea, the multiple vaccines at once.”
“She wanted to say it, and I wanted you to get it out there,” Winfrey replied, as the audience clapped. “Because you are a mother dealing with your child every day.”

Tuesday, January 9, 2018

Prenatal Testing and Abortion

 In The Politics of Autism, I explain:
When a pregnancy is under way, doctors can detect certain kinds of disorders, but neither amniocentesis nor any other prenatal test can currently tell us whether a fetus will become autistic. Suppose that such a test did exist. “The best case use of a prenatal test at the moment would be if you could say to a parent, your child has got an 80 percent likelihood of autism and so once the baby's born, we would like to keep a close eye on that child in case they need extra support like speech therapy or social skills training or some sort of behavioral approach,” says leading autism scientist Simon Baron-Cohen. But would the “best case use” be the most common? When amniocentesis indicates Down Syndrome, most mothers choose abortion. A study of autism parents in Taiwan found that just over half would abort if a prenatal test indicated that their next child would be autistic. We cannot be sure what the figures would be if such tests were available in the United States, but it seems likely that a large share of autism pregnancies would end in abortion.
 In Burlington, NC, Elizabeth Pattman reports at The Times-News:
LabCorp has received a patent on a method for diagnosing autism spectrum disorders.

The method, invented by David Michael Margulies and Mark Firman Bear of Massachusetts, involves taking a tissue or body sample from a subject and then conducting a test to identify variant sequences in the subject’s genetic code, which may signify “the presence or an increased risk of developing autism spectrum disorders.” Testing can be done on children and fetuses, according to the patent.

The method is stated to aid in the diagnosis of five autism spectrum disorders, all of which fall under the umbrella of pervasive developmental disorders: autistic disorder, Asperger’s disorder, childhood disintegrative disorder, Rett’s disorder, and nonspecific pervasive developmental disorders.

Monday, January 8, 2018

Recordings and Rights in Conflict

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

Parents of an autistic Maine teen want him to have a recording device during the school day.  Alanna Durkin Richer reports at AP:
A novel case heading Monday to the 1st U.S. Circuit Court of Appeals in Boston, which hears most New England cases, pits the student's parents against his southern Maine school district, which says the recording device would infringe on other students' privacy rights. His parents say they need a glimpse into his day so they can better advocate for him at a school they don't trust isn't always telling the whole story.

"Most kids can come home and tell their parents what happened at school or what the teacher had done or not done. He can't do that," said Matthew Pollack, the father of the now 18-year-old Ben.
Attorneys for the district say teachers and administrators have gone above and beyond to provide the parents with information about the student, who they say loves school. A hearing officer concluded last year there is "simply no demonstrable benefit" to allowing the parents to record his day and that it would actually be "disruptive and detrimental" to his education.

In other states, parents of special education students have secretly placed audio recorders on their children to expose abuse, which have led to firings or settlements. And Texas recently began requiring school districts to install cameras in certain special education classrooms.

But opponents say such actions raise serious privacy concerns.

If parents can assert a right to "send an always-on listening device to school with their children, what would this mean for students who wished to report abuse or neglect at home to a school counselor, or for students with disabilities who are LGBT?" asked Samantha Crane of the Autistic Self Advocacy Network.

Sunday, January 7, 2018

Organizing for the Alabama Mandate

The Politics of Autism includes an extensive discussion of insurance and the regulation of autism service providers.

At The Montgomery Advertiser, Brian Lyman has an oral history of the passage of Alabama mandate legislation.  This section deals with organizing:
Catey Hall, parent and advocate: A small group of parents and the Autism Society had done this for six years. What they did not have was a strong presence of advocates and parents self-advocating, asking legislators to support them. We decided we’re going to do that this year.
Lisa Whitson Riley, parent and advocate (son George was diagnosed with autism at age 4): The Autism Society sent out newsletters. I set up a Facebook page the first go-around that we all then started tapping into and using. We would use the Facebook page. We needed people who weren’t on the Facebook page. I posted everything. I did Facebook, Twitter and LinkedIn. And there was another parent who did Instagram and Snapchat. We flooded social media.
Hall: We would say ‘We need people here.’ And people came. It was hard for those families. The ones who couldn’t secure child care, they would bring their children with autism there.

Sen. Cam Ward, R-Alabaster:
Catey was in the balcony videotaping the debates and streaming it live on Facebook. We didn’t have it on Facebook in 2012.
Bama Hager, policy and program director, Autism Society of Alabama: The grassroots support for the Alabama Autism Insurance Law was so tremendous that lawmakers soon became interested in learning more about the absence of insurance coverage for children who have autism. Parents, self-advocates living with autism, grandparents, aunts, uncles, teachers, neighbors and friends were advocating ferociously for this bill for their loved ones.
Derek Trotter, lobbyist: There were generally a couple of advocates in the State House on session days. We made sure they touched their members and their senator that represents them and whoever they could get in front of.
Riley: I had coffee parties. What I did was I posted on Facebook, ‘Hey, come meet me at the coffee house.’ We would pass out the list and call senators and members of the House and ask them to support this bill. We personalized it. Not just calling and saying ‘Support this because I want you to,’ but ‘I know someone.’

Saturday, January 6, 2018

Wandering: One Sad Story

The Politics of Autism discusses the problem of wandering, which has been the topic of legislation before Congress

Beth Warren reports at the Louisville Courier Journal:
Shalom Lawson, an 8-year-old Louisville boy who loved hugging people he just met, wandered from a relative's home last summer and drowned.

He had autism, a disorder that causes many children to walk off. "Elopers,"as they are called, are especially drawn to water and are unaware of the risks.

"Water makes them feel calm, but water is very, very dangerous," said Shalom's mother, Magdalene Lawson, who came to America from West Africa with her husband, Charles.

She told Courier Journal she tried to protect her son by locking her bathroom to keep him from filling up the bathtub. She feared he would burn himself or drown. And she said she kept an alarm on her front door that would beep if he tried to get out.
But on a visit with family near Indianapolis last July, Shalom wandered off and drowned in a retention pond.
The story of Shalom's death is being shared with MetroSafe dispatchers and others who respond to emergencies in the Louisville area by trainers who are working with them on how to help people with autism.
"The police, fire department and EMS are in our society to be that resource to every individual," said Deborah Morton, executive director of Families for Effective Autism Treatment in Louisville. She said a tense situation can turn chaotic if emergency personnel don't know how to respond.

Friday, January 5, 2018

More on Sessions Decision to Rescind ADA Guidance

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

On the Thursday afternoon before the Christmas holidays, Attorney General Jeff Sessions' Department of Justice rescinded 25 guidance documents that the department found "unnecessary, inconsistent with existing law, or otherwise improper." The list included 10 texts on disability rights, including one as recent as 2016 (i.e. hardly out of date). This recent document codified the labor rights of disabled people as they move from sheltered workshops paying sub-minimum wage into the integrated economy. Its deletion represents the latest effort of the Trump administration to roll back disability protections in the 21st century.
I spoke over the phone to Eve Hill, former deputy assistant attorney general for the DOJ's Civil Rights Division. Hill tells me that technical assistance around the ADA is vital for everyone involved. Removing it doesn't change the law; "the law is the law," she says. But when people don't understand that law, access to services can be threatened, and the courts become the only recourse. Hill says she's angry because the Trump administration is taking away a proactive and "helpful approach," leaving confusion (and the likelihood of litigation) in its wake. 
On December 21, the U.S. Department of Justice rescinded its Statement on Application of the Integration Mandate of Title II of the Americans with Disabilities Act and Olmstead v. L.C. to State and local Governments' Employment Service Systems for Individuals with Disabilities. The statement, which was issued last year, described the obligations of states to administer their employment services for people with disabilities in the most integrated setting appropriate. Evidence-based supported employment services help people with disabilities secure and maintain competitive, integrated employment. They are critical to achieving the ADA's goals of independent living and economic self-sufficiency.
We are extremely concerned about the withdrawal of this guidance document, both because it sends the wrong signal to public entities that are seeking to comply with the ADA and because it may reflect a diminished concern with the importance of providing employment services in the most integrated setting. As the Justice Department notes, withdrawal of this guidance "does not change the legal responsibilities of State and local governments under title II of the ADA, as reflected in the ADA, its implementing regulations, and other binding legal requirements and judicial precedent, including the U.S. Supreme Court’s Olmstead decision." The Statement reflected already established law, and its withdrawal does nothing to change that law, existing settlement agreements, or prior Justice Department findings letters about the application of the ADA's integration mandate and Olmstead to employment systems.
The vast majority of people with disabilities and their families want opportunities for competitive integrated employment. Most employment service providers, in response to best practices, federal law, and DOJ Guidance, are working to change their business models away from sheltered work to competitive integrated employment, and almost all states have embraced an "employment first" approach reflecting that shift. The Department's guidance was consistent with the priority the disability community has placed on enforcement of their civil rights to work alongside and with the same conditions as their peers without disabilities.
We are committed to expanding opportunities for all people with disabilities to have opportunities to work alongside their non-disabled peers for competitive wages and fulfill the ADA’s goals of integration, independence and economic self-sufficiency. We urge the Justice Department to remain committed to these goals as well.
We are also concerned about the process by which the Department announced that it is withdrawing nine other technical assistance documents on the same day. While some of these documents were outdated, government transparency is critically important. We were concerned to see so many documents suddenly withdrawn with little explanation of the reasons for doing so. Guidance documents are important tools to educate all stakeholders about the requirements of the law in a clear fashion, and the withdrawal of some of these guidance documents may create confusion and misunderstanding.