The Vax War Goes On

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.

At Vaccine, Mark Dredze and colleagues have an article titled "Vaccine Opponents’ Use of Twitter during the 2016 US Presidential Election: Implications for Practice and Policy."

These patterns show that those endorsing vaccine refusal are significantly more engaged with Mr. Trump than with other candidates. This engagement increased after the election. Given the increased energy of the vaccine refusal community, and early actions from the Trump administration, we may see policy proposals (including increased pressure on state governments from both federal and grassroots sources) aimed at addressing  erceived vaccine safety concerns. Even small changes can have consequences, since prevention of communicable diseases that impact children requires long-term, consistent effort.

At PLOS One,  Sara Pluviano, Caroline Watt, and Sergio Della Sala have an article titled Misinformation Lingers in Memory: Failure of Three Pro-vaccination Strategies."  The abstract:

People’s inability to update their memories in light of corrective information may have important public health consequences, as in the case of vaccination choice. In the present study, we compare three potentially effective strategies in vaccine promotion: one contrasting myths vs. facts, one employing fact and icon boxes, and one showing images of non-vaccinated sick children. Beliefs in the autism/vaccines link and in vaccines side effects, along with intention to vaccinate a future child, were evaluated both immediately after the correction intervention and after a 7-day delay to reveal possible backfire effects. Results show that existing strategies to correct vaccine misinformation are ineffective and often backfire, resulting in the unintended opposite effect, reinforcing ill-founded beliefs about vaccination and reducing intentions to vaccinate. The implications for research on vaccines misinformation and recommendations for progress are discussed.

From the article:

Our pattern of results thus confirms that there should be more testing of public health campaign messages. This is especially true because corrective strategies may appear effective immediately yet backfire even after a short delay, when the message they tried to convey gradually fades from memory, allowing common misconceptions to be more easily remembered and identified as true [25]. This is the case of one of the most frequently used corrective strategy employing the myths versus facts format, which often backfires because the simple repetition of the myth, though well-intended and necessary in order to contrast it with the available evidence, paradoxically amplifies the familiarity of that false claim making it seem even more believable and widely-shared [46]. This happens, at least partly, because people tend to mistake repetition for truth, a phenomenon known as the “illusory truth” effect [22, 23]. Familiarity appears as a key determinant of this effect; indeed, when something seems familiar is easier to process and one is more inclined to believe it [24], regardless of whether the statement is factually true or false [22, 47] or was initially rated as credible or questionable [48].

 Soumya Karlamangla and Sandra Poindexter report at The Los Angeles Times:

Even with a new law that has boosted kindergarten vaccination rates to record highs, hundreds of schools across California still have so many children lacking full immunization that they pose an increased risk of disease outbreaks, according to a Times analysis of state data.

At nearly 750 schools, 90% or fewer kindergartners had been fully vaccinated last year, the analysis found. Experts say the rate should be at least 95% to prevent the spread of highly contagious diseases such as measles.

California’s tougher inoculation law, known as SB 277, was approved in 2015 after a measles outbreak that originated at Disneyland. The law bars parents from citing religious or personal beliefs to excuse their children from immunizations, but some who already had such exemptions were allowed to keep them.

The rest of the unvaccinated children need a form signed by their doctor saying they had a medical reason not to get their shots.

In the school year that began last fall, the law’s first year, the number of kindergartners in California with medical exemptions tripled, the analysis found [from 991 to 2850]

Autism and Moral Responsibility

In The Politics of Autism, I discuss interactions between police and autistic people.  When autistic people violate the law, to what extent should the courts hold them responsible?  The answer is the same as for NT people:  it depends on the individual case.

At Neuroethics, Kenneth A. Richman has an article titled "Autism and Moral Responsibility: Executive Function, Reasons Responsiveness, and Reasons Blockage." The abstract:

As a neurodevelopmental condition that affects cognitive functioning, autism has been used as a test case for theories of moral responsibility. Most of the relevant literature focuses on autism’s impact on theory of mind and empathy. Here I examine aspects of autism related to executive function. I apply an account of how we might fail to be reasons responsive to argue that autism can increase the frequency of excuses for transgressive behavior, but will rarely make anyone completely exempt from moral responsibility in general. On this account, although excuses may apply more often to autists than to others, the excuses that apply to autists are just the same excuses that can apply to anyone.

Autistic Adults' Quality of Life

In The Politics of Autism, I write:

Many analyses of autism speak as if it were only a childhood ailment and assume that parents are the main stakeholders. But most children with autism grow up to be adults with autism, and they suffer uniquely high levels of social isolation. Almost 40 percent of youth with an autism spectrum disorder never get together with friends, and 50 percent of never receive phone calls from friends. These figures are higher than for peers with intellectual disability, emotional disturbance, or learning disability. When school ends, many adults with autism have grim prospects. Though evidence is sparse, it seems that most do not find full-time jobs. Compared with other people their age, they have higher rates of depression, anxiety, bipolar disorder, and suicide attempts.

At Autism, Michael Ayres and colleagues have an article titled "A Systematic Review of Quality of Life of Adults on the Autism Spectrum."  The abstract:

Autism spectrum disorder is associated with co-existing conditions that may adversely affect an individual’s quality of life. No systematic review of quality of life of adults on the autism spectrum has been conducted. Our objectives were as follows: (1) review the evidence about quality of life for adults on the autism spectrum; (2) critically appraise current practice in assessing quality of life of adults on the autism spectrum. We searched bibliographic databases and other literature to identify studies using a direct measure of quality of life of adults on the autism spectrum. Hand searching of reference lists, citation searching and personal communication with field experts were also undertaken. In total, 827 studies were identified; 14 were included. Only one quality of life measure designed for use with the general autism spectrum population was identified. Quality of life of adults on the autism spectrum is lower than that of typically developing adults, when measured with tools designed for the general population. There are no comprehensive autism spectrum disorder–specific quality of life measurement tools validated for use with representative samples of adults on the autism spectrum. There is a pressing need to develop robust measures of quality of life of autistic adults.

The perspective of autistic people on these issues can be quite different from that of non-autistic people. From the article:

[We] need to also be mindful that autistic individuals may value some experiences and activities more/less than people without ASD (Tavernor et al., 2013). For example, time spent on repetitive behaviours and on circumscribed or particular interests may be considered   more desirable than some activities undertaken by typically developing adults; social and group activities may be valued less by autistic adults. Therefore, the items included in these specific domains of assessment tools developed for and validated with the general population may lack validity when used with autistic individuals.

Better Business Bureau v. DeVos Company

In The Politics of Autism, I write:

The conventional wisdom is that any kind of treatment is likely to be less effective as the child gets older, so parents of autistic children usually believe that they are working against the clock. They will not be satisfied with the ambiguities surrounding ABA, nor will they want to wait for some future research finding that might slightly increase its effectiveness. They want results now. Because there are no scientifically-validated drugs for the core symptoms of autism, they look outside the boundaries of mainstream medicine and FDA approval. Studies have found that anywhere from 28 to 54 percent of autistic children receive “complementary and alternative medicine” (CAM), and these numbers probably understate CAM usage.

As previous posts noted, Education Secretary Betsy DeVos has a stake in Neurocore, a "brain training" company. U

At International Business Times, Josh Keefe reports that DeVos actually increased her stake in the "brain training" outfit called Neurocore and that the BBB is going after it.

The National Advertising Division (NAD) of the Council of Better Business Bureaus recommended this week that Neurocore “discontinue its testimonials.” The NAD said a review of the company’s claims, and their supporting evidence, led it to conclude that “the advertiser’s evidence was insufficiently reliable to substantiate the strong health-related advertising claims.”

According to the NAD, these claims include statements such as, “81% of children who come to us on ADHD meds and complete our program are able to reduce or eliminate their use of medications upon program completion,” as well as claims that Neurocore services produced a “25% reduction in reported symptoms on the autism evaluation checklists.”

The problem with the company’s claims, according to the NAD, is that they relied on a study of their own patients and those patients’ self-assessments.
...
Advocates for students with disabilities including autism were especially alarmed by DeVos’ connection to Neurocore — a company that claimed its treatments produced a “25% reduction in reported symptoms on the autism evaluation checklists.”

“We have a lot of evidence-based treatments that actually do help children with autism,” Fred Volkmar, director of the Yale Child Study Center, told Spectrum News, a news site dedicated to autism research, in February. Volkmar said that DeVos’ awareness of treatments seemed to be limited to the one that “has not yet been shown to be effective.”

Low Reiumbursement Rates in South Carolina

In The Politics of Autism, I discuss Medicaid services for people with intellectual and developmental disabilities, as well as other government programs at the federal and state levels.

Tim Smith reports at The Greenville News:

A "large" number of South Carolina children suffering from autism are not getting access to medically necessary treatment they need because the state pays the lowest therapy rates in the nation, a lawyer representing advocates and organizations has told federal Medicaid officials.

In a letter to the U.S. Centers for Medicare and Medicaid dated June 29, the advocates urge federal officials to direct the state Department of Health and Human Services to increase their reimbursement rates for applied behavior analysis treatments, what advocates believe offers the most hope for many who suffer from autism.

"Our most immediate concern is that a large number of South Carolina children are being deprived of access to prescribed, medically necessary ABA treatment because SCDHHS’ substandard reimbursement rate for these services — the lowest in the country, by far — has resulted in a lack of providers of this desperately needed care," Daniel Unumb wrote for the Autism Legal Resource Center and seven advocates and their organizations.

Unumb is the husband of Lorri Unumb, vice president of Autism Speaks and a new appointee for the state Department of Disabilities and Special Needs Commission. She also signed the letter.

Invitation to Take Part in an Autism Study

Hello,

My name is Katie Franke, and I am a doctoral candidate in school psychology at the University of South Carolina. If you are a caregiver of a teen with ASD (ages 13-18), I invite you and your teen to participate in an on-line research study of strengths and well-being. The online questionnaire (password: research) takes 20-30 minutes total to complete. A caregiver completes the first part, and the teen completes the second part. Participants can enter to win one of eight $25 Amazon.com gift cards!

Survey Link: https://www.surveymonkey.com/r/thoughtsandfeelings
Password: research
--
Kathleen B. Franke, M.A.
School Psychology Doctoral Candidate
University of South Carolina
1512 Pendleton Street
Columbia, SC 29208
kfranke@email.sc.edu 

Evidence for the Cost-Effectiveness of Early Intervention

In The Politics of Autism, I discuss costs and benefits of autism services.

A release from the University of Pennsylvania School of Medicine:

A recent study by Penn Medicine researchers published online ahead of print in the Journal of the American Academy of Child & Adolescent Psychiatry found that the costs associated with the Early Start Denver Model (ESDM), one evidence-based treatment for young children with autism, were fully offset after only two years following intervention due to reductions in children's use of other services.

The Early Start Denver Model (ESDM) is designed for children with autism ages 12 to 48 months. The program includes a developmental curriculum and a set of teaching procedures that are delivered by therapy teams and parents either in a clinic or the child's home. A randomized trial of 48 children between 18 and 30 months of age who were diagnosed with ASD found that children who received ESDM had better cognitive and behavioral outcomes than children who received community treatment. The present study of associated costs used data that was collected during that trial and for two years after the trial was completed.

During the intervention, children who received the ESDM had average annual health-related costs that were higher by about $14,000 than those of children who received community-based treatment, although this difference was not statistically significant.

The higher cost of ESDM was partially offset during the intervention period because children in the ESDM group used fewer community services like early intervention and speech therapy. In the post-intervention period, compared with children who had not received ESDM, children in the ESDM group used fewer early intervention services, less occupational or physical therapy, and less speech therapy, resulting in cost savings of about $19,000 per year per child. While the exact reasons for this reduction in service use aren't known, it is likely that children who were in the ESDM group used fewer services because they had made developmental gains to the point that their parents thought that they no longer needed those services.

Zuleyha Cidav, PhD, the lead author of the study, and a research assistant professor at the Center for Mental Health Policy and Services Research says that the findings demonstrate the economic value of identifying young children with autism and providing early high-quality, intensive and comprehensive developmental behavioral treatment.

"Prior studies have found that community-based early intervention costs between $40,000 and $80,000 per year," Cidav said. "We found that the high-quality, university-based early intervention delivered in this study costs about $45,580. This suggests that the issue is not how much we spend on early intervention, but rather how we use that money most effectively to scale up such interventions so that they are effective in community settings."

According to the study's senior author, David Mandell, ScD, a professor of Psychiatry and director of the Center for Mental Health Policy and Services Research, prior studies that relied on simulated data to estimate the return on investment of early intervention generally found that it would take decades to see a financial return on investment.

"We wanted to show what the short term payoff would be if payers invested in early intensive treatment for children with autism," Mandell said. "Much to our surprise, we found that the entire additional cost associated with high-quality intervention as opposed to traditional community services, which often are not as intensive or as of high quality, was completely offset within two years."

...
In the United States, the two largest funders of early intervention services for children with autism are the Department of Education and Medicaid. In Pennsylvania alone, Medicaid pays roughly $130 million each year for special education services like behavioral health therapists and occupational and physical therapy in schools. Mandell says his team's study is particularly important in the current political climate, where cuts to funding for Medicaid and special education are regularly being debated by elected officials.

The Benefits of Portraying Autism on the Screen

In The Politics of Autism, I discuss depictions of ASD in popular culture.  

Matthew Berger writes at Healthline:

One in 68 U.S. children has autism — 1 in 42 boys — and that rate has steadily increased since researchers began tracking it in 2000.

But just 58 percent of people with autism were employed in 2015. That’s far lower than the overall employment rate, and also the overall rate for people with disabilities.

More people with autism in films and on TV — portrayed accurately — help fix that.

“There’s an unemployment rate that’s ridiculously high,” Matt Asner, vice president of development at the Autism Society of America, told Healthline.

He said people with autism are “model employees,” and that employers need to step up and hire them.

“But in order for that to happen, we need to educate employers on what autism is, and I think film and TV does a great job at that,” he said.

Asner mentioned the new series Atypical and The Good Doctor. 

“The greatest thing that’s happening right now…is that we’re starting to see people talk about autism in a very respectful way. We’re seeing people weave it into the lives of the people on-screen instead of making a statement about it,” Asner said. “They’re dealing with autism the way it should be dealt with, just as a part of life."

The Good Doctor and Atypical

In The Politics of Autism, I discuss depictions of ASD in popular culture.  

At Deadline, Antonia Blyth reports on a new ABC series about an autistic surgeon

The Good Doctor has some parallels with the show House, EP David Shore admitted. “There was speculation as we went along about Dr. House and we certainly didn’t shy away from that,” he said. “The characters though ultimately couldn’t be more different.”

Shore was quick to point out that much research and consultation was done before representing a person living with autism. “We saw a lot of doctors, we consulted with people, we’ve got people on the spectrum who we’re working with,” he said. “But he is a specific character, he’s not there to represent autism, he’s there to represent Dr. Shaun Murphy.” 

Dr. Murphy exhibits savant traits, which are a highly unusual aspect of autism, but Shore assured reporters the show would work hard not to contribute to stereotyping. “Savant syndrome is rare, even within the community of people with autism,” he said, “I think it’s a legitimate question, and we want to make sure that we don’t represent him as being representative in any way.”

At The San Francisco Chronicle, David Wiegand takes a skeptical look at a new Netflix comedy

Although Sam (a terrific Keir Gilchrist), the lead character in “Atypical,” is an 18-year-old on the autism spectrum, while JJ (equally terrific Micah Fowler) has cerebral palsy on “Speechless,” the two shows not only have similar plot foundations, but one is an example of how to do it right, and the other an example of how to screw it up. 

The comedies share the theme of the adjustments a family has to make when one of its members has special issues. In both of the above-mentioned shows, the sitcom mothers are fierce, domineering caregivers, while the fathers are somewhat more detached. Minnie Driver is a take-no-prisoners mom on “Speechless,” while Jennifer Jason Leigh as Elsa Gardner is her son’s ever-vigilant champion on “Atypical.” Elsa wears the “burden” of having a son with autism on her arm, day and night. She attends a support group, is overly protective of Sam and doesn’t want to face the reality that he’s eventually going to live his own life apart from the family. She wallows so completely in the challenges, real and perceived, of Sam’s autism that she uses them as an excuse for some personal bad behavior that feels completely inauthentic.

VAST LIFE

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

Michael Vinci writes at The Philadelphia Public School Notebook:

Joselito "Josie" Torres is 19 years old, but until recently he had never made a purchase at a store by himself. He never rode the subway, nor had he bought a ticket to a museum on his own. But when Torres attended the University of Pennsylvania’s Graduate School of Education VAST LIFE program for teenagers with disabilities, that all changed.

VAST LIFE (which stands for Vocational Academic Social Skills Training Life Skills Independence Functional Experiences), is a program that pairs Penn graduate students with high school students ages 14-21 who have moderate to significant developmental and intellectual disabilities. The purpose of the program is to help graduate education students receive the experience they need to meet Pennsylvania requirements for special education certification, while also helping teenagers with disabilities in the tri-state area become more independent.

Monica Page-Torres, Josie’s mother, said that the VAST LIFE program has helped her son in many ways. 

“The program made him more independent. He was always very shy, but they taught him to communicate better by interacting with the other students. I’ve seen a change,” she said.

Lawsuit: Problems in NYC Special Education

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

From Disability Rights Advocates

M.G., et al. v. New York City Department of Education, et al.
Click here for case documents Date Filed: 07/27/2017 Status: Active 

On July 27, 2017, DRA filed a class action lawsuit against the New York City Department of Education (“DOE”), the City of New York, and DOE Chancellor Carmen Fariña, in her official capacity, alleging violations of the Individuals with Disabilities Education Act and other anti-discrimination laws on behalf of a class of students with disabilities who attend school in the Bronx and are being denied legally-mandated special education services. 

If the New York City Department of Education cannot find providers for related services that a student with a disability needs like occupational therapy or speech therapy, it issues a “voucher” to parents instead called Related Service Authorizations or RSAs 

While typically these services would be provided during the school day, the families of children receiving these vouchers are left to fend for themselves, often facing insurmountable obstacles related to limited transportation options, inflexible work schedules, and language barriers. These vouchers go unused at very high rates. In the Bronx, over 63% of the vouchers are not used. The rates of usage are not much better across the City generally as almost half of the over 9,000 vouchers issued in the 2015-2016 school year went unused

DRA’s goal in this case is to ensure that the DOE develops and implements a remedial plan that includes new practices, policies, and procedures to ensure that all students in the Plaintiff Class receive their related services.

Autism-Friendly Venues

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

At The Philadelphia Inquirer, Rita Giordano reports that more recreational and cultural facilities are welcoming ASD kids and their families.

Philadelphia’s major league sports teams host autism awareness events. Delaware’s Dover International Speedway and NASCAR hold an autism-friendly weekend every year. Other kid meccas like the Please Touch Museum, the Garden State Discovery Museum, the Adventure Aquarium, the Philadelphia Zoo, and New Jersey’s Diggerland and Sahara Sam’s Oasis are among the places that offer programs and accommodations for ASD children 

When the Philadelphia-area Legoland, one of several around the country, opened this spring, facility officials promised autism-friendly programming. For its first event on July 28, Legoland partnered with the nearby Ruttenberg Autism Center to prepare, including training Legoland staff about the ways people with ASD may perceive things differently than they do. 

“It’s a different way of looking at the world through their eyes,” said Ruttenberg director Eric R. Mitchell, a psychologist who is also the parent of a teenager on the spectrum.

Vaccine Reluctance Among Dog Owners Is Dangerous

In The Politics of Autism, I look at the discredited notion that vaccines cause autism

At Time, Jeffrey Kluger writes that vaccine reluctance among dog owners is not only stupid but dangerous.  In human populations, such attitudes lead to outbreaks of measles, pertussis and other diseases.

The same is true of canine vaccines. And if you're inclined to think, well, that's a problem for the dogs to sort out, think again. Rabid dogs, for starters, are a threat to everyone. More worrisome, leptospirosis, a vaccine-preventable bacterial infection carried by rats, spreads readily to dogs and then to humans. A serious outbreak struck the New York-New Jersey area in 2017, and Brooklyn itself was hit in 2009. The disease is often fatal in dogs. In humans it can lead to liver failure, respiratory problems, meningitis and, in extreme cases, death.

"Outbreaks of disease among unvaccinated dogs can be devastating to a community," said Brian Hare, an associate professor of evolutionary anthropology at Duke University and founder of the Duke Canine Cognition Center. "Unvaccinated dogs going to daycares or dog parks, or even walking around their neighborhoods, are at a much higher risk of contracting, and spreading, these diseases ... If you love your dog and the people around you, vaccinate them."