Autism as Metaphor in International Relations

In The Politics of Autism, I discuss challenges facing autistic adults and children.  One is the misuse of the term autism, which in turn spreads misunderstanding of autistic people.

At the European Journal of International Relations, Stephen Michael Christian has an article titled "Autism in International Relations: A Critical Assessment of International Relations’ Autism Metaphors."  He argues that scholars of international relation use autism metaphor that "shape or reinforce understandings of autism that often oversimplify, overgeneralize, or otherwise negatively misrepresent autism and Autistic people." He identifies two patterns.

First, IR acholars do frequently stereotype autism; this article focuses especially on the autism-as-disease and autism-as-aloneness metaphors. Scholars have also used other problematic associations with autism, such as violence and perpetual immaturity. Regardless of what the stereotype is, Autistic people and autism experts alike have repeatedly asserted that these stereotypes are outdated, contested, and misleading, when not simply wrong.

Second, IR scholars use autism metaphors to disparage either foreign policies or support their IR theories. Scholars use this rhetoric for legitimizing their arguments, and such rhetoric succeeds when they connect ableist understandings of autism held by readers with some foreign policy or IR theory. Scholars will sometimes incorporate autism metaphors to improve their theories, while others use it to disparage a foreign policy or alternative theory. This disparagement implies a scholar’s desire to rectify such a foreign policy or theory, much like how doctors and research focus on autism to find a treatment or cure.

Policies on Restraint and Seclusion

In The Politics of Autism, I discuss the use of restraint and seclusion.

Teri A. Marx and Joshua N. Baker have an article at the Journal of Disability Policy Studies titled "Analysis of Restraint and Seclusion Legislation and the Policy Across States: Adherence to Recommended Principles."  The abstract:

This review examines each state’s educational legislation and policies on restraint and seclusion in relationship to their alignment with the U.S. Department of Education’s (U.S. DOE) Restraint and Seclusion: Resource Document. Although the Resource Document is not a federal mandate, it provides the U.S. DOE’s recommendations for policy and legislation to reduce the use of restraint and seclusion in schools and create safe learning environments for all students. State educational legislation and policies on restraint and seclusion were coded and compared with the U.S. DOE Resource Document’s 15 guiding principles. Results were variable and found that some states’ policies adhered more to the guiding principles than their legislation. In addition, some states recognize the document in their legislation and policy. A summary of the descriptive data and current state statuses are reported.

The conclusion:

The present investigation examined states’ legislation and policy in relationship to the guiding principles as a way to identify whether states are incorporating best practices, including preventive and proactive approaches, in their restraint/seclusion legislation and policy. Thirty-eight states have existing legislation and 45 have policy on restraint and seclusion, with improvement noted over time. Now that federal guidance is available, states may want to revisit their existing policies and legislation on restraint and seclusion
and consider alignment with the guiding principles. The U.S. DOE’s release of the  esource Document provides the first evidence of federal guidance with regard to restraint and seclusion. Although the Resource Document is not a federal mandate, it is the most current federal guidance to date on restraint and/or seclusion, and is presently the best source of guidance for states to consider for reducing the use of restraint/seclusion and for promoting safe learning environments.

FDA Nominee Contradicts Trump on Autism and Vaccines

In The Politics of Autism, I discuss the issue's role in presidential campaigns.   In this campaign, a number of posts discussed Trump's support for the discredited notion that vaccines cause autism.  He also has a bad record on science and disability issues more generally.

Emma Court reports at MarketWatch about Gottlieb's confirmation hearing before the Senate Health, Education, Labor and Pensions committee.

Food and Drug Administration commissioner nominee Scott Gottlieb said Wednesday at his Senate confirmation hearing that there “is no causal link between vaccination and autism.”

As a doctor, Gottlieb said he sympathized with parents. But this “has been one of the most exhaustively studied questions in history,” he said, and the answer was clear.

If confirmed, Gottlieb — a conservative health policy expert, venture-capital firm partner and former FDA deputy commissioner — would be in charge of the agency that regulates vaccines, approving them, regulating how they are manufactured and following reports of side effects once they are on the market.

Robert King reports at The Washington Examiner:

Dr. Scott Gottlieb was asked by Sen. Chris Murphy, D-Conn., during his confirmation hearing about President Trump's flirting with creating a commission on vaccine safety. Vaccine skeptic Robert Kennedy Jr. said after the president was elected that Trump asked him to head the commission, but it was scuttled after a public outcry.

"There is no causal link between vaccination and autism," said Gottlieb, a physician and agency veteran. "At some point we have to accept no for the answer."
...

"I have a history of not being shy," he said, referring to several articles and opinion pieces he has written over the years. "I will give people my direct advice and science-based judgment."

Age at identification of Autism

In The Politics of Autism, I discuss evaluation and diagnosis of young children.

At The Journal of the American Academy of Child and Adolescent Psychiatry, R. Christopher Sheldrick, Melissa P. Maye, and Alice S. Carter  have an article titled "Age at First Identification of Autism Spectrum Disorder: An Analysis of Two US Surveys."  The abstract:

Objective

Evidence regarding the age at which autism spectrum disorder (ASD) is identified is essential for improving early detection, yet many extant studies have not applied time-to-event analyses, which account for statistical biases that arise from sampling in cross-sectional surveys by adjusting for child age at time of parental report. Our objective was to estimate age distributions for first identification of ASD in national parent surveys using time-to-event analyses.

Method

We conducted time-to-event analyses of responses to identical questions in the 2011 to 2012 National Survey of Children’s Health (n = 95,677) and the 2009 to 2010 National Survey of Children with Special Health Care Needs (n = 371,617).

Results

Parents in both surveys reported that a minority of ASD cases were identified before age 3 years, and that one-third to one-half of cases were identified after 6 years. In both surveys, a majority of parents described their child’s ASD severity as mild, and these parents reported the oldest age at identification (mean, 5.6 and 8.6 years). In contrast, parents who described their child’s ASD as severe reported earlier age at identification (mean, 3.7 and 4.5 years). Time-to-event analyses yielded older estimates of age at identification than analyses based on raw distributions.

Conclusion

In two national surveys, a majority of parents of children with ASD reported identification after 3 years, when eligibility for early intervention services expires, and many reported identification of ASD after school age. Later identification of children with milder symptoms highlights the need for early screening that is sensitive to all forms of ASD, regardless of severity.

Autism Advocacy in Oklahoma

The Politics of Autism includes an extensive discussion of insurance legislation in the states.

William W. Savage III writes at NONDOC:

When Tara Hood and a group of dedicated parents decided to advocate for the Oklahoma Legislature to pass a bill mandating health insurance coverage of autism treatment, she thought it would take a few years.

“We didn’t know what we were doing,” Hood said. “None of us thought it was going to pass in one year. We were pleasantly surprised.”

Hood and other autism advocates spoke of their 2016 legislative victory Monday during Autism Awareness Day at the Oklahoma State Capitol. They also discussed further efforts they said are needed to improve the lives of the thousands of Oklahoma children living on the autism spectrum.

...
[D]espite the mandate taking effect Nov. 1 for state-based insurance plans in Oklahoma, families with autistic children have plenty of room to fall through the cracks.

For instance, SoonerCare (Oklahoma’s Medicaid program) does not offer coverage for things like applied behavior analysis (ABA), said Judith Ursitti, director of state government affairs for the national advocacy organization Autism Speaks.
...

“There are still some gaps,” Ursitti said of Oklahoma’s law. “It’s a federal mandate (for Medicaid programs), but Oklahoma is not in compliance.”

Insurers to Cover ABA Without a Mandate? Parents Are Skeptical.

The Politics of Autism includes an extensive discussion of insurance legislation in the states.

AT WDAZ-TV, Andrew Haffner reports that autism parents in North Dakota are doubting insurance company promises to cover ABA.

Lawmakers rejected House Bill 1434 after debating the necessity of using legislation to compel insurers to provide coverage for applied behavioral analysis, or ABA, a specific behavioral treatment for autism disorders not currently included in most insurance plans offered in the state.

Central to some of the argument against the bill was the testimony of Blue Cross Blue Shield North Dakota, the largest-single medical insurance provider in the state, that it would provide coverage for ABA without a mandate beginning Jan. 1, 2018.

Though a litany of other treatments are available through the state's insurers, many parents and autism advocacy groups stand by ABA as a critical treatment and now, as the dust clears, some are still not confident the therapy will be provided without a mandate from the state.

"Legislators are relying on the hope that BCBS will start covering these treatments for children with autism, and it's not a promise that we wanted to rely on," Janice Kern, a mother of an autistic son and a leader of the North Dakota organization Talk About Curing Autism, or TACA. "We are worried that, without a mandate, children will continue to wait and not be able to access treatment."

Anti-Vaxxers Hold Small Demonstration

In The Politics of Autism, I discuss the issue's role in presidential campaigns.   In this campaign, a number of posts discussed Trump's support for the discredited notion that vaccines cause autism.  He also has a bad record on science and disability issues more generally.

Rebecca Robbins reports at STAT:

Dozens of activists who reject the robust science supporting vaccinations held a march and rally Friday, capped off with a speech from Robert F. Kennedy Jr. A noted and vociferous vaccine skeptic, Kennedy accused the media, drug companies, and the government of a conspiracy to cover up supposed links between vaccines and autism — an allegation that has been thoroughly discredited.

The day of demonstrations followed an intense lobbying push on Thursday. Activists held 80 meetings on Capitol Hill, many of them with staffers for members of Congress, according to Irene Pi, an organizer from Arizona. Among their goals: Push President Trump to establish a vaccine safety committee led by Kennedy.

New approaches to paying for medicines: How can we accelerate progress?
To ensure patient access to today’s breakthroughs, we need a payment system as innovative as the medicines. How do we get there? Learn about the opportunities and challenges here.

“We’re being heard, and we’re going to enact change,” activist Jena Dalpez said.

A vast body of scientific research shows that vaccines do not cause autism and are essential in preventing the spread of potentially fatal infectious diseases. When too many parents fail to vaccinate their children, it can jeopardize entire communities — with people whose immune systems are compromised due to illness or chemotherapy most at risk.

World Autism Awareness Day 2017

In The Politics of Autism, I discuss international perspectives.

Following is UN Secretary-General António Guterres’ message on World Autism Awareness Day, observed on 2 April:

On this World Autism Awareness Day, let us all play a part in changing attitudes towards persons with autism and in recognizing their rights as citizens, who, like everyone else, are entitled to claim those rights and make decisions for their lives in accordance with their own will and preferences.  Let us also renew our promise, engraved in the 2030 Agenda for Sustainable Development, to leave no one behind and ensure that all people can contribute as active members to peaceful and prosperous societies.

As the United Nations Convention on the Rights of Persons with Disabilities points out, legal capacity and equal recognition before the law are inherent rights that persons with autism enjoy on an equal basis with other members of our societies.

In the exercise of those rights and their freedom to make their own choices, let us ensure that we make available the necessary accommodations and support to persons with autism.  With access to the support they need and choose, they will be empowered to face the key milestones in every person’s life, such as deciding where and with whom to live, whether to get married and establish a family, what type of work to pursue and how to manage their personal finances.

When they enjoy equal opportunity for self-determination and autonomy, persons with autism will be empowered to make an even stronger positive impact on our shared future.

Autism Portrayals

In The Politics of Autism, I discuss depictions of ASD in popular culture.   A couple of years ago, Sesame Workshop introduced an autistic character online.  Next month, Julia will be on the television program.

Sammy Caiola writes at The Sacramento Bee:

Just as “Sesame Street” announced Julia’s debut, the makers of the new “Power Rangers” movie, released last Friday, announced that Billy, the blue ranger, is on the autism spectrum. They have not released further details about what traits the character possesses, although one Vox review notes that Billy has trouble reading people’s emotions and doesn’t get his fellow Rangers’ jokes.

John Matthias, of Roseville, said he looks forward to taking his 15-year-old autistic son Wesley to see the film. In particular, he’s curious to see if Wesley, who has trouble forming full sentences but loves going to the movies, will connect with the autistic character.

...
Matthias hopes the film will at least help stop the bullying that many autistic teenagers experience. About 63 percent of students on the autism spectrum experience bullying at some point, according to a 2014 study from the Interactive Autism Network.

...

When most people think of autism in popular culture, they still remember the 1988 film “Rain Man,” said Jack Gallagher, a Sacramento actor and playwright whose 21-year-old son, Liam, has autism. The iconic Tom Cruise and Dustin Hoffman film, which won the Academy Award for best picture, helped raise awareness about autism, he said, but it was also misleading.

“If I were portraying someone on the spectrum, I would portray them as a normal person with some quirky social issues, and not as someone who can count every toothpick on the floor or tell you every president’s middle name,” Gallagher said, referring to a scene from the film. “For a long time there were a lot of stereotypical qualities that were given to folks on the spectrum, and now people understand that’s not true. I hope these characterizations are more accurate than they used to be.”

Read more here: http://www.sacbee.com/news/local/health-and-medicine/article141346728.html#storylink=cpy

The National Longitudinal Transition Study

In The Politics of Autism, I write:

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.

A report for the US Department of Education by Mathematica Policy Research:

The National Longitudinal Transition Study (NLTS) 2012 provides updated information on youth with disabilities in light of these changes, to inform efforts to address their needs. ...This second volume of findings from the NLTS 2012 focuses on youth with an IEP only and the similarities or dissimilarities across 12 disability groups defined by IDEA 2004. The assessment of diversity among the disability groups in the decade following IDEA 2004 suggests several key points: 

• Youth with intellectual disability and emotional disturbance are the most socioeconomically disadvantaged groups and the most likely to attend lower-performing schools. According to parents, 72 percent of youth with intellectual disability live in low-income households, which is 14 percentage points higher than youth with an IEP on average. Smaller proportions of youth with intellectual disability (71 percent) and emotional disturbance (73 percent) have an employed parent, compared with all youth with an IEP (80 percent). In addition, one-third of students in these two groups attend a lower-performing school, compared with 27 percent of all youth with an IEP. In contrast, youth with autism and speech or language impairments are less socioeconomically disadvantaged than youth with an IEP overall (for example, 37 and 49 percent live in low-income households versus 58 percent of all youth with an IEP) and less likely to attend a lower-performing school (22 and 19 percent versus 27 percent). 
• Difficulties with health, communication, and functioning independently are most prevalent among youth with autism, intellectual disability, multiple disabilities, and orthopedic impairments. According to parents, youth in these four groups are most likely to have difficulty performing various activities of daily living without help, such as getting to places outside the home (43 to 60 percent can do so, versus 85 percent for all youth with an IEP). In addition, parents indicate that 37 to 53 percent have a chronic health condition, compared with 28 percent of youth with an IEP overall. At least half of youth in the first three groups have trouble communicating with and understanding others, as reported by parents. Youth with specific learning disabilities and speech or language impairments are less likely to have these difficulties.
• The groups that most commonly face health and functional challenges are also less engaged with friends and in school activities, but youth with emotional disturbance are most likely to get into trouble. Youth with autism, deaf-blindness, intellectual disability, multiple disabilities, and orthopedic impairments are 10 to 36 percentage points less likely than youth with an IEP overall (52 percent) to report getting together with friends weekly. In addition, those with intellectual disability and multiple disabilities are about 10 percentage points less likely to report participating in school sports and clubs, compared with all youth with an IEP (64 percent). Youth with emotional disturbance are, on average, suspended (65 percent), expelled (19 percent), and arrested (17 percent) at more than twice the rates of youth with an IEP, according to parents, and are the most likely group to report being teased (48 percent). In contrast, youth with speech or language impairments are less likely to face engagement challenges. 
• Youth with autism, intellectual disability, and multiple disabilities are most likely to receive academic modifications but least likely to receive some other forms of academic support. Parents report that about two-thirds of youth in these groups take modified tests and more than half receive modified assignments. Yet those youth are 16 to 25 percentage points less likely than youth with an IEP on average (72 percent) to report receiving school-provided supplemental academic instruction outside of regular school hours. They are also 7 to 14 percentage points less likely than all youth with an IEP (73 percent) to indicate that they received guidance on courses to take. Moreover, parents of youth with autism and multiple disabilities, along with youth with emotional disturbance, are least likely to report providing their children with weekly homework help (54 percent for all three groups, compared with 62 percent across all youth with an IEP). 
• The same three groups—youth with autism, intellectual disability, and multiple disabilities—are least likely to take steps to prepare for college and employment. For example, 16 to 29 percent of youth ages 16 and older with autism, intellectual disability, and multiple disabilities report having taken a college entrance test, compared with 42 percent of youth with an IEP on average. Youth in these groups are also about half as likely as youth with an IEP overall to have had a paid job while in high school (22 to 23 percent versus 40 percent). In addition, their parents are less likely than parents of other youth with an IEP to expect them to obtain postsecondary education (32 to 53 percent versus 61 percent) and live independently as adults (35 to 49 percent versus 78 percent).

Autism and Parental Time

 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." New studies confirm that parenting ASD children is stressful. This finding comes as no surprise to these parents -- trust me on that -- but as Alison Singer reminds us, it is important to have systematic published research on all aspects of the issue -- even when it merely documents what people know already. Stress levels are an important element in the politics of autism, too. Stressed-out parents may lack the time and energy to engage in legislative and regulatory advocacy outside their individual cases.

Sigan L. Hartley, Leann Smith DaWalt and Haley M. Schultz have an article at the Journal of Autism and Developmental Disorders titled: "Daily Couple Experiences and Parent Affect in Families of Children with Versus Without Autism."  The abstract:

We examined daily couple experiences in 174 couples who had a child with autism spectrum disorder (ASD) relative to 179 couples who had a child without disabilities and their same-day association with parent affect. Parents completed a 14-day daily diary in which they reported time with partner, partner support, partner closeness, and positive and negative couple interactions and level of positive and negative affect. One-way multivariate analyses of covariance and dyadic multilevel models were conducted. Parents of children with ASD reported less time with partner, lower partner closeness, and fewer positive couple interactions than the comparison group. Daily couple experiences were more strongly associated with parent affect in the ASD than somparison group. Findings have implications for programs and supports.

From the article:

Our findings have important implications for programs and supports for parents of children with ASD. Efforts to foster adaptive daily couple experiences may lead to marked improvements in the psychological well-being of parents of children with ASD. Such efforts should focus on: (1) debunking myths (see Hartley et al. 2010) that parents of children with ASD are fated to experience dismal couple relationships by disseminating evidence that vulnerabilities are limited in scope and degree, and many couples report positive couple relationships. (2) Acknowledging the difficulty of juggling multiple demands (e.g., child with ASD, siblings, employment, couple relationship, etc.) and of having limited time with one’s partner. (3) Encouraging parents to carve out time to share feelings and thoughts and connecting with their partner, as opposed to only working through daily life demands. For example, couples could reserve 5 min in the evening for sharing stories from their day. (4) Supporting parents in creating opportunities for positive couple interactions such as doing a fun activity together or taking a moment to text/email a joke or give their partner a complement over their lunch hour. Achieving these goals may require reducing care demands and emotional stressors by increasing the availability of respite care, family supports (e.g., paid providers to help with childcare and/or household tasks), and/or financial assistance to reduce time and emotional burdens experienced by parents. These goals do not need to be achieved through increasing couple alone time. Instead, they could be achieved by fostering positive and fun family-wide activities (i.e., involving not only partners, but also the child with ASD and other family members), and promoted through child-directed interventions (e.g., child’s social and language therapy provided in context of the family playing a game together)

Proposal for a Voluntary Registry in Ohio

In The Politics of Autism, I discuss interactions between police and autistic people. 

Jackie Borchardt reports at Cleveland.com:

A pair of Ohio lawmakers are proposing a voluntary registry for individuals with autism, speech impairments or other disabilities hampering communication, as a way to better inform law enforcement officials.

The information would be available only to officers recalling information from a driver's license or license plate, and officers wouldn't know details about the disability besides that fact it could influence communication.

"We're trying to close the communication gap between people who voluntarily go through this initiative with a communication disability and law enforcement officers," said Rep. Scott Wiggam, a Wooster Republican co-sponsoring the bill.

House Bill 115 was prompted by recent Ohio incidents where drivers with autism were arrested for driving under the influence of alcohol. The drivers failed field sobriety tests but blood and urine tests came back negative.

Olivia Fecteau reported at WCMH-TV:

Medicaid and the Trumpcare Near-Miss

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

Kate Zernike, Abby Goodnough, and Pam Belluck report at The New York Times that Medicaid survived the Trumpcare fiasco.

Medicaid now provides medical care to four out of 10 American children. It covers the costs of nearly half of all births in the United States. It pays for the care for two-thirds of people in nursing homes. And it provides for 10 million children and adults with physical or mental disabilities. For states, it accounts for 60 percent of federal funding — meaning that cuts hurt not only poor and middle-class families caring for their children with autism or dying parents, but also bond ratings.
...
Representative [Chris] Smith of New Jersey said he was voting no because of concerns about the impact on people with disabilities, who make up just 15 percent of all Medicaid recipients but account for 42 percent of spending, making them particularly vulnerable to cuts.

For millions of disabled people, Medicaid covers services provided at home or through local programs — aides who help them walk, eat and bathe, for example, and physical and speech therapy — that allow them to stay out of institutions, where care is often more expensive. But those services are optional for states, while the cost of institutional care is not. The law would have given states an incentive to place them in institutions.