Parents Who Sue

In The Politics of Autism, I write about the experiences of different economic, ethnic and racial groups.   Inequality is a big part of the story. Affluent school districts have more resources than poor ones.  Educated professionals are better able to protect their children's interests than poor people who never went to college.

Attorneys have become major figures in the world of autism, because people often need legal counsel to get services from school districts and other government agencies. Soon after a diagnosis of autism, parents seek advice from those who have already been on the path. And soon they will hear, “Get a lawyer.”

The rights approach puts a great burden on parents to serve as advocates for their children.  Highly-educated, affluent parents are in a better position to do so than the poor and uneducated:  for one thing, their social networks are more likely to include lawyers and expert witnesses.  

Sophie Peel at Willamette Week:

When classes resume at Portland Public Schools this fall, three students with autism will receive more personal care than another 15 of their classmates with the same disorder.

One of those children will have a district-employed therapist dedicated to him full time, and will also have his personal therapist in the classroom for four hours a week.

Another roughly 15 students with autism who used to receive daily help from their personal therapists won't get the same care. Their therapists—paid for by their parents' insurance—may only observe from the back of the class for a maximum of two hours a week. Instead, they will receive help from therapists paid for by the district, who will split their time among the kids.

The difference? Three families had the money to sue the school district. The others didn't.

"Only the families who could spend tens of thousands of dollars on legal services were able to get their services restored," says Paul Terdal, a parent who sued the district in 2017 and eventually settled, obtaining extra care for his son.

The families who sued the district are among those who have insurance plans that cover "applied behavior analysis," a well-regarded form of autism therapy. But not all families have such health care.

HCBS: The Need to Hear from Autistic Adults

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.

Lindsay Shea, Whitney Schott, Julia Bascom, Amy R. Pettit at Health Affairs:

The US spends more than $80 billion per year on Medicaid-funded home and community-based services (HCBS). This investment provides vital support to adults with disabilities, who typically do not have access to these resources through private insurance. Over the next several years, states will be mandated to implement new federal requirements that will, for the first time, establish a federal minimum standard for HCBS and modernize and shape delivery of these services for years to come. As part of this process, the Centers for Medicare and Medicaid Services (CMS) called for states to offer meaningful and repeated opportunities for stakeholders to provide input into their transition plan and processes. Autistic adults make up a growing portion of these stakeholders, as a result of an increase in autism spectrum disorder (ASD) diagnoses and an aging population of autistic people diagnosed in childhood who will need services through adolescence and adulthood. Autistic voices and perspectives will be critical to shape a service system that can effectively meet their needs, but it remains unclear whether states’ public comment periods and feedback processes have included effective mechanisms for this group to be heard.

Mostly Genetic

In The Politics of Autism, I discuss various ideas about what causes the condition.

Dan Bai and colleagues have an article at JAMA Psychiatry: "Association of Genetic and Environmental Factors With Autism in a 5-Country Cohort."

Key Points

Question  What are the etiological origins of autism spectrum disorder?

Findings  In a large population-based multinational cohort study including more than 2 million individuals, 22 156 of whom were diagnosed with ASD, the heritability of autism spectrum disorder was estimated to be approximately 80%, with possible modest differences in the sources of autism spectrum disorder risk replicated across countries.

Meaning  The variation in the occurrence of autism spectrum disorder in the population is mostly owing to inherited genetic influences, with no support for contribution from maternal effects.

Abstract

Importance  The origins and development of autism spectrum disorder (ASD) remain unresolved. No individual-level study has provided estimates of additive genetic, maternal, and environmental effects in ASD across several countries.

Objective  To estimate the additive genetic, maternal, and environmental effects in ASD.
Design, Setting, and Participants  Population-based, multinational cohort study including full birth cohorts of children from Denmark, Finland, Sweden, Israel, and Western Australia born between January 1, 1998, and December 31, 2011, and followed up to age 16 years. Data were analyzed from September 23, 2016 through February 4, 2018.
Main Outcomes and Measures  Across 5 countries, models were fitted to estimate variance components describing the total variance in risk for ASD occurrence owing to additive genetics, maternal, and shared and nonshared environmental effects.

Results  The analytic sample included 2 001 631 individuals, of whom 1 027 546 (51.3%) were male. Among the entire sample, 22 156 were diagnosed with ASD. The median (95% CI) ASD heritability was 80.8% (73.2%-85.5%) for country-specific point estimates, ranging from 50.9% (25.1%-75.6%) (Finland) to 86.8% (69.8%-100.0%) (Israel). For the Nordic countries combined, heritability estimates ranged from 81.2% (73.9%-85.3%) to 82.7% (79.1%-86.0%). Maternal effect was estimated to range from 0.4% to 1.6%. Estimates of genetic, maternal, and environmental effects for autistic disorder were similar with ASD.

Conclusions and Relevance  Based on population data from 5 countries, the heritability of ASD was estimated to be approximately 80%, indicating that the variation in ASD occurrence in the population is mostly owing to inherited genetic influences, with no support for contribution from maternal effects. The results suggest possible modest differences in the sources of ASD risk between countries.

Disability Voter Turnout

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

Lisa Schur and Douglas Kruse of Rutgers: Fact sheet: Disability and Voter Turnout in the 2018 Elections

Key points:

• Voter turnout surged by 8.5 points in 2018 among citizens with disabilities relative to the 2014 midterm elections. The surge, though, was slightly larger among citizens without disabilities (11.9 points), resulting in a 4.7 point gap in voter turnout between citizens with and without disabilities in 2018.
• The increased turnout among people with disabilities occurred across all disability types and demographic categories—gender, race/ethnicity, age group, and region.
• 14.3 million citizens with disabilities reported voting in the November 2018 elections.
• Employed people with disabilities were just as likely as employed people without
• disabilities to vote, suggesting that employment helps bring people with disabilities into mainstream political life.
• If people with disabilities voted at the same rate as people without disabilities who have the same demographic characteristics, there would be about 2.35 million more voters. 

These figures are based on analysis of data from the federal government’s Current
Population Survey Voting Supplement for November 2018, which has a sample size of 88,749. The computations were made using six disability questions introduced on the Current Population Survey in 2008.

Bullying of Students with Disabilities

In The Politics of Autism, I discuss challenges facing autistic adults and children.  One is bullying.

The National Center on Education Statistics has a new report on bullying.

Among students who reported being bullied: Perceived relationship of bullying to

Race .........................9.5%
Religion ..................  4.5
Ethnic origin .............7.3
Disability ............7.3
Gender ......................7.5
Sexual orientation ... 3.6
Appearance ...........   29.7

1,123

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing disease to spread.

From CDC: "From January 1 to July 11, 2019, 1,123** individual cases of measles have been confirmed in 28 states. This is an increase of 14 cases from the previous week. This is the greatest number of cases reported in the U.S. since 1992 and since measles was declared eliminated in 2000."

From WHO: "20 million children worldwide – more than 1 in 10 – missed out on lifesaving vaccines such as measles, diphtheria and tetanus in 2018, according to new data from WHO and UNICEF. Globally, since 2010, vaccination coverage with three doses of diphtheria, tetanus and pertussis (DTP3) and one dose of the measles vaccine has stalled at around 86 percent. While high, this is not sufficient. 95 percent coverage is needed – globally, across countries, and communities - to protect against outbreaks of vaccine-preventable diseases."

Transformational Advocacy Project

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

Sarah Wood in Diverse Issues in Higher Education:

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

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

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

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

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