Stigma

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 their difference and likely to stigmatize or hinder them on that basis?”[i]

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

Nicole Buonocore Porter at The Regulatory Review:

When people think about the stigma surrounding disabilities, they usually think about discomfort, fear, or sometimes even disgust.

But as I have previously argued, stigma can also result from people with disabilities receiving special treatment in the form of accommodations. I call this “special treatment stigma,” and it occurs in a variety of settings, including the workplace.

In higher education, this stigma often leads to students with disabilities either refusing to disclose their disabilities or experiencing social disapproval when they do. Both results are problematic.

Although people with disabilities are attending college in record numbers, they continue to face social, academic, and psychological stigma if their disability is visible or if they disclose a hidden disability.

Students with disabilities report feeling judged by their peers and their professors. They worry about standing out as different and perceive that their peers and professors either doubt their ability to perform academically or believe that they are receiving an unfair advantage if they receive academic accommodations.

Suicide and Self-Harm

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.

A release from  Columbia University Mailman School of Public Health:

People with autism spectrum disorder (ASD) are at substantially increased risk of self-injury and suicide, according to a study by researchers at Columbia University Mailman School of Public Health and Columbia College of Physicians and Surgeons. They found that odds of self-harm in people with autism spectrum disorder were over three times that of people without ASD. Elevated odds of self-harm existed in both children and adults with ASD, though there were slightly higher odds in adults. The findings are published in JAMA Network Open.

It is estimated that 5,437,988 U.S. adults (2 percent) have autism. In children, prevalence estimates have increased over the past several decades due in part to improved awareness, changes in documentation, and the identification of milder cases.

“The findings from our systematic review and meta-analysis underscore the need for targeted interventions to reduce the risk of self-harm in people with autism,” said Ashley Blanchard, MD, MS, assistant professor of emergency medicine at the Vagelos College of Physicians and Surgeons. “Among the myriad of health problems facing people with ASD is the excess risk of injury morbidity and mortality. The emergency department presents a unique clinical setting for interventions to reduce self-harm and other injuries in people with autism.”

The researchers used PubMed, Embase, CINAHL, PsychInfo, Web of Science databases from 1999 through June of 2020 to identify studies on the relationship between ASD and self-injurious behavior and suicide. They identified 31 studies with a wide range of ages and self-harm outcomes. Twenty-nine showed statistically significant positive associations between ASD and self-harm, and that people with ASD were at similarly increased risk of self-injury behavior and suicide.


According to the researchers, several factors may explain the excess risk of self-harm associated with ASD. The prevalence of self-injurious behavior, such as hand-hitting, self-cutting, and hair pulling, is as high as 42 percent in the autism population. Estimates also show that 28 percent of people with ASD have co-occurring attention deficit hyperactivity disorder, 20 percent have co-occurring anxiety disorders, and 11 percent have co-occurring depressive disorders. There is also a known link between self-injury and suicide.

“Our findings are of public health importance in light of the continuing increase in the reported prevalence of autism and the high prevalence of self-injurious behavior in this population—especially relevant during a period of heightened rates of depression, anxiety, and suicide associated with the COVID-19 pandemic,” said study senior author Guohua Li, MD, DrPH, professor of epidemiology at the Columbia Mailman School, professor of anesthesiology at the Vagelos College of Physicians and Surgeons. “Further research should aim to determine the impact of co-occurring diagnoses, develop injury surveillance systems for the autism population, and implement effective prevention strategies to ensure the safety and well-being of people with ASD.”

Co-authors include Stanford Chihuri, Columbia College of Physicians and Surgeons; and Carolyn DiGuiseppi, University of Colorado Anschutz Medical Campus.

The study was supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development of the National Institutes of Health (grant HD098522).

Autism Prevalence in New Jersey Communities

In The Politics of Autism, I discuss the uncertainty surrounding estimates of autism prevalence. 

A release from Rutgers University:

In some New Jersey communities up to 8 percent of children have autism spectrum disorder (ASD) — more than triple the national average, according to a Rutgers study.

Funded by the Centers for Disease Control and Prevention the study appears in the journal Autism Research.

Researchers analyzed data from the Autism and Developmental Disabilities Monitoring Network — a group of programs funded by CDC to estimate the number of children with autism — looking at 5,453 children in public school districts in Essex, Hudson and Union counties who were 8 years old in 2016.

They discovered an estimated ASD prevalence of 36 children per 1,000 in most regions, but greater than 70 per 1,000 in multiple school districts in the state. The national average of children with ASD is 2 percent.

“When we focused on the district level, we recognized that many communities in our region —approximately one in five, including some of the largest — had ASD rates between 5 percent and 10 percent,” said study co-author Josephine Shenouda, a project coordinator at Rutgers New Jersey Medical School. “These variations may reflect differences in use of services or access to care. Larger districts may provide more services from a greater number of professionals or have additional resources for detection or care of ASD. It is also possible that parents of children with learning or developmental disorders relocate from small districts to large districts to maximize their children’s educational attainment.”

The study also found that one in five school districts had ASD estimates greater than 5 percent and that Hispanic children were less likely to be identified with ASD, compared to white and Black peers, indicating a significant disparity in identification.

ASD prevalence was approximately 5 percent in Newark, the state’s largest school district. Tom’s River, which is the state’s largest suburban school district, had the highest ASD prevalence (7.3 percent), with a 12 percent prevalence among boys. “We found that mid-socioeconomic status communities, like Toms River, had the highest ASD rates, which was contrary to expectation because in earlier U.S. studies ASD rates were highest in high- socioeconomic status communities,” said Shenouda.

“The study suggests that effective educational and health planning should be informed by community and county level estimates and data as well as by state and national averages,” said coauthor Walter Zahorodny, an associate professor of pediatrics at Rutgers New Jersey Medical School. “It also shows that additional effort is needed to reduce disparities in the identification of ASD in the Hispanic community, including expansion of ASD screening of toddler-age children.”

Other Rutgers authors include Emily Barrett, Amy L. Davidow, William Halperin and Vincent Silenzio.

The Buttar Battle

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

Rob Kuznia, Scott Bronstein, Curt Devine and Drew Griffin, at CNN:

[Dr. Rashid] Buttar has shared all manner of outrageous claims and misleading statements about the pandemic: Most people who took the vaccine will be dead by 2025. It's all part of a "depopulation plan." Covid-19, he wrote on Twitter -- where he has 88,000 followers -- was a "planned operation."

In a recent interview with CNN's Drew Griffin, Buttar stood by it all.

"I've told people the best thing that could happen is you get Covid," he said.

"The best thing that can happen is get Covid?" Griffin asked.

"Of course," Buttar replied. "You're going to build your own innate immune system and then you don't have to worry about it anymore."

He later said, falsely: "More people are dying from the Covid vaccine than from Covid."

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Buttar, 55, has long been popular among anti-vaxxers and parents of children with autism. He has reportedly drawn patients from most US states and more than 40 countries. (Buttar puts the country count at 94.) In an especially high-profile case in 2009, then-celebrity couple Jenny McCarthy and Jim Carrey -- both noted vaccine skeptics -- referred a woman who said that she'd been sickened by a flu vaccine to Buttar for his unorthodox treatments, according to the 2013 book, "Do You Believe in Magic? The Sense and Nonsense of Alternative Medicine," by vaccine expert Dr. Paul Offit.

Buttar is a believer that environmental toxins such as mercury and lead are at the root of many chronic maladies, from autism to heart disease to cancer. He has treated patients -- hundreds of them children with autism -- with a patented cream that he claims removes poisonous metals from the body, according to Offit's book.

Buttar has twice been reprimanded by the North Carolina Medical Board, in 2010 and 2019.

Bright Autistic Students

 In The Politics of Autism, I discuss the growing number of college students on the spectrum. 

Sally M. Reis, Nicholas W. Gelbar & Joseph W. Madaus have an article at The Journal of Autism and Development Disorders titled :"Understanding the Academic Success of Academically Talented College Students with Autism Spectrum Disorders." The abstract:

Little is known about the academic and extra-curricular experiences of academically talented students with Autism Spectrum Disorder (ASD). This study focused on how these capable students with ASD successfully navigated and completed high school, and specifically, the experiences that enabled them to attend competitive colleges. Using comparative case studies and directed content analysis, data were derived from semi-structured interviews with 40 students who had been identified as academically talented with ASD, and were enrolled in, or recently graduated from, highly competitive colleges in the United States. The majority were identified as having academic talents, participated in challenging honors classes, enrichment opportunities, interest-based extra-curricular activities, residential summer programs, and pursued other advanced educational experiences. Implications for educational and talent development services are included.

From the article:

Educators and parents who support 2e students should focus on having their talents recognized, as it was important for these participants to have been identified as gifted or as having academic talents, enabling their inclusion in more advanced content classes and strength-based educational opportunities. As several participants were identified after completing comprehensive testing for the ASD, special education teachers and administrators should try to focus on students’ strengths and talents, as well as their disabilities, as a result of testing for special education services. As has been advocated in previous research (Reis et al., 2014), inclusion of talent development experiences and advanced learning opportunities made an important difference in the future academic success of this group, as did these participants’ identification as 2e.

Educators and parents of 2e students should advocate for the inclusion of talent development opportunities, especially extracurricular activities as goals for 2e/ASD students. The IEP or Sect. 504 plan can also include engaging and interest-based extracurricular activities such as those in which these students participated, including science fair, invention convention, or debate club. These extracurricular interest areas can help address 2e/ASD students’ social skills and leadership capabilities, using their interests and talents. Parents and educators should also consider the ways they can support these students’ social development, academic interests, and future college experiences by exposing them to residential programs that will help them to develop socially which will aid in their meta-cognitive development and understanding of how they learn. For these participants, residential programs attended during middle and high school were essential contributions to their subsequent academic success.

Students who are identified as 2e/ASD should be given opportunities to develop their interests and talents in both school and extracurricular activities. They should also have the opportunity to learn about their profiles of both strengths and weaknesses and understand the implications of their dual identification. They should be given information about why they should participate in advanced classes, extra-curricular activities, and residential programs, and they should have the opportunity to ask questions about why these different activities can be beneficial, even if they are uncomfortable initially.

Tasing an Autistic Man

In The Politics of Autism, I discuss interactions between police and autistic people.  Police officers need training to respond appropriately.  When they do not -- as recent events have shown -- things get out of hand. 

Holly Bristow at Fox 35 Orlando

Eustis Police tased a man with severe autism multiple times Saturday in what Police Chief Craig Capris calls a "perfect storm."

"We did everything per policy per protocol per policy people say you tased an autistic man. That’s not true. We tased a felony suspect that wasn’t complying. We later found out he happened to be autistic," Chief Capri told FOX 35 News.

..;

Officers eventually get the man into handcuffs. A little over four minutes into the video the people start running towards the officers yelling, "We know him! He’s autistic! He’s non-communicative."

It’s the man’s family. They say he has the mental capacity of a toddler.

Officers can be heard explaining that they tased the man, identified as 20-year-old Louis Grahai. He was uncuffed and put in an ambulance.

According to a police report, once officers realized Louis didn’t have the mental capacity to commit a crime, they let him go without pressing charges.

Parks

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

Judith Newman at National Geographic:

[M]ore parks and recreation centers are seeking recognition as “Certified Autism Centers.” The imprimatur comes from the International Board of Credentialing and Continuing Education Standards (IBCCES), which oversees training in the field of cognitive disorders originally created by the Autism Society of America.

The National Park Service formed its own Accessibility Task Force in 2012, with the goal of making some areas of the outdoors available to those with physical disabilities. It’s only been in the last two years that the NPS has discussed extending its accommodations to those with developmental disabilities like Autistic Spectrum Disorder. The National Parks access pass for autism is still not widely known, but you can apply for $10 and get free access to virtually every national park in the country.

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Despite abundant research showing that spending time in nature can be deeply soothing to those on the spectrum (as it is to the rest of us) and can even help improve attention and focus, there are significant obstacles. The list of triggers includes new smells, new sensations, unfamiliar noises, too much light…the list goes on and on. With natural beauty, there is also a great deal of unpredictability. Certainly no one can control the weather.

For autistic families, the great outdoors is not a first choice. According to one recent study by the IBCCES, 87 percent of autism families never go on vacation at all. When they do go, it might be to a theme park, or a city.

But the new IBCCES initiative to certify certain parks and recreation centers as autism-friendly could be a game changer. To earn certification, 80 percent of all personnel must receive specialized training on dealing with people on the spectrum.