New research from UC Santa Cruz shows incremental improvements in the representation of autistic adults in film, television, books, media coverage, and advocacy organization websites. The study, published in the journal Autism in Adulthood, follows up on a 2011 paper, “Infantilizing Autism,” in Disability Studies Quarterly, which had found that popular portrayals of autism were overwhelmingly focused on children.
The earlier paper had raised alarm about lack of representation of adults with autism, which can limit public awareness of the unique needs of some autistic adults, like employment and housing accomodations. At the time, the authors of the 2011 paper—Jennifer L. Stevenson, Bev Harp, and Morton Ann Gernsbacher—theorized that the bias toward representing children might be due to factors like advocacy organizations being led by parents and clinicians and a predominant focus on initial diagnosis and treatment of autism.
However, since then, the neurodiversity movement has continued to grow, especially as autistic self-advocates have worked to shift focus onto how autistic people can flourish throughout their lives. And a new team of researchers, led by UC Santa Cruz Psychology Professor Nameera Akhtar, wondered whether these efforts, and other potential influences, may have affected representations of autism over the past decade. So, they set out to replicate the 2011 study.
“This is an important issue to track, because autistic adults often say it’s very annoying to them that autism is almost always depicted as having to do with children, and it's like that is making them invisible,” Akhtar said. “They talk about how it’s like they fall off a cliff when they turn 18, because there are very few resources available for them after that. But, of course, you don't stop being autistic and needing accommodations when you become an adult.”
To see how trends in representation may have changed, one place the research team looked was the websites of some well-known autism advocacy and charity organizations. In reviewing online materials from 49 state and regional chapters of the Autism Society of America, the team found that 20% of photographs depicting autistic individuals were of adults, compared to only 5% of photos when the 2011 study had originally reviewed these sites. While children were still heavily favored, this was a statistically significant improvement. And 80% of websites at least mentioned autistic adults and linked to related resources. A review of 16 additional autism charity organization websites found similar results.
The study also looked for trends across the entertainment industry. Researchers analyzed 124 movies and television shows released between 2010 and 2019 that featured autistic characters. They found that 58% of these characters were children, whereas 68% of autistic characters were children in the 2011 paper’s original analysis. The new paper says one factor that could be contributing to this improvement is that production teams are increasingly bringing in consultants to advise on proposed portrayals of autism—likely due to calls for more accurate representation from autistic self-advocates.
However, levels of representation were quite different in the publishing industry. The research team reviewed 484 English-language fiction books published between 2010 and 2017 that included a mention of an autistic character in the book’s description. 81% of these characters were children, compared to the 91% at the time of the 2011 paper’s analysis. This was a statistically significant improvement, despite the lingering disparity. The new paper conducted an additional analysis showing that representation was better among books geared toward adult audiences, in which 67% of autistic characters were children.
The research team also analyzed 90 news stories from print, television, and radio media outlets in the United States that featured one autistic individual and were published between April and May of 2020. 58% of these stories featured autistic children, compared to 79% of stories in a similar analysis for the initial study.
But the new paper notes that even though autistic adults are increasingly represented in news media, they may still be portrayed as childlike. For example, the study showed that one-third of news stories that included autistic adults also mentioned their parents. And prior research has found that non-autistic researchers, parents, and clinicians are more likely to be presented as experts on autism than are autistic adults themselves.
Overall, the authors of the new study say that, while their findings show a shift toward more numerical representation for adults in portrayals of autism, there’s still plenty of room for improvement, including in the capacity of those representations to truly reflect the lived experiences of autistic adults. UCSC Associate Professor of Philosophy Janette Dinishak, a coauthor of the new paper, says she hopes future improvements in representation might include increased attention to the intersectionality of autism with gender, race, ethnicity, and other social categories or identities.
“We need to see a continued increase in the number of representations of autistic adults, along with an improvement in the manner of that representation to reflect the heterogeneity of how autism manifests across a person’s lifespan,” she said. “Autistic people need to be part of the conversation on how to improve that representation, and they also need to be given space to represent themselves.”
Thursday, June 30, 2022
Adults, Children, and Portrayals of Autism
Wednesday, June 29, 2022
Inflammatory Bowel Disease and Autism
In The Politics of Autism, I discuss various ideas about what causes the condition.
Evidence linking parental inflammatory bowel disease (IBD) with autism in children is inconclusive. We conducted four complementary studies to investigate associations between parental IBD and autism in children, and elucidated their underlying etiology. Conducting a nationwide population-based cohort study using Swedish registers, we found evidence of associations between parental diagnoses of IBD and autism in children. Polygenic risk score analyses of the Avon Longitudinal Study of Parents and Children suggested associations between maternal genetic liability to IBD and autistic traits in children. Two-sample Mendelian randomization analyses provided evidence of a potential causal effect of genetic liability to IBD, especially ulcerative colitis, on autism. Linkage disequilibrium score regression did not indicate a genetic correlation between IBD and autism. Triangulating evidence from these four complementary approaches, we found evidence of a potential causal link between parental, particularly maternal, IBD and autism in children. Perinatal immune dysregulation, micronutrient malabsorption and anemia may be implicated.
IBD joins a growing list of correlates, risk factors, and possible causes that have been the subject of serious studies:
Tuesday, June 28, 2022
Critical View of ABA and Private Equity
In The Politics of Autism, I write:
As long as government funds so much research, politics will shape the questions that scientists ask and determine the kinds of research that receive funding. Politics will even influence which scientists the policymakers will believe and which findings will guide public policy. In the end, science cannot tell us what kinds of outcomes we should want. ABA “works” in the sense that it helps some autistic people become more like their typically developing peers. Most parents regard such an outcome as desirable, but not all people on the spectrum agree.
The book also includes an extensive discussion of autism service providers.
Private equity has shown initiative in its jump into autism services in recent years–a move that acknowledges the support autistic individuals and their families need.
In 2018, Blackstone acquired the Center for Autism and Related Disorders, the world’s largest autism therapy provider. Similar acquisitions by other firms soon followed.
In their efforts to streamline responsive services for this population, investors and others within and outside of the autism community should be aware of the paradigm shift happening around autism services as new evidence emerges, and particularly Applied Behavior Analysis (ABA) therapy, one of the main interventions for the disability.
ABA has been in my family’s life since my younger brother was diagnosed at the age of four in the 1990s, and I was about six years old. It is based on theories of behaviorism and operant conditioning, and is known as the gold standard by many in the caregiver and professional community.
However, several factors in recent years have compelled me to break away and try to shed some light on a troubling dynamic that exists in this space–and elevate the voices of those who have been hurt by ABA, in the hopes that others in both the professional and consumer communities will listen.
Last year, I retracted an article I wrote as a law student in a Harvard law journal, which gave a history of how health insurance came to provide coverage for ABA and argued for expanded access to coverage throughout the U.S.
The process of writing the initial article brought me into contact with several parent advocates and professionals in the community who then invited me to work with them as they launched a new organization centered around litigating to improve access to autism services, and primarily ABA, throughout the nation.
At the time, I didn’t realize the set of experiences I’d have over the next few years would be as significant and perspective-altering as they turned out to be.
Monday, June 27, 2022
IDEA Data 2020-21
In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act.
From the National Center for Education Statistics, Report on the Condition of Education 2022
From school year 2009–10 through 2020–21, the percentage of public school students served by the Individuals with Disabilities Education Act (IDEA) increased from 13 percent (6.5 million students) to 15 percent (7.2 million students) In 2020–21, some 33 percent of all students who received special education services had specific learning disabilities, 19 percent had speech or language impairments, and 15 percent had other health impairments (figure 6) (Students With Disabilities).
Sunday, June 26, 2022
Faith and the Antivaxx Toll
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. And among those diseases could be COVID-19.
Antivaxxers are sometimes violent, often abusive, and always wrong.
We are slowly but surely emerging from a deadly pandemic. It’s not that the disease has disappeared. Far from it. But the combination of mutations, vaccinations, and prior infections is making it far less deadly. Yet at every point in the pandemic, it was pro-life red America that loudly declared its bodily autonomy, disproportionately shunned even the slight inconvenience of a mask before the vaccine, and then disproportionately rejected the vaccine when it miraculously appeared mere months after the pandemic began.
Parts of pro-life red America moved from skepticism to outright defiance. “How dare you tell me what to do. This is my decision between me and my doctor.” They trafficked in pseudo-science and bizarre conspiracy theories. The cost was staggering. It was horrifying. Look at this chart, from the Brown School of Public Health:
When I bring this up, people get furious. The conventional wisdom on the right has hardened into adamantium. If you condemn the anti-vaxx movement, then you’re an elitist. You hate anti-vaxxers. How dare you question their decisions? Everyone knows the real cultural tragedy of the pandemic was the way the terrible blue states imposed extended lockdowns and kept schools closed too long.
To criticize the anti-vaxx movement isn’t to hate or look down on its members any more than criticizing the pro-choice movement means hating or looking down on its members. Strong disagreement isn’t hatred, even when you believe the contrary position contains grave moral flaws.
I also can agree that blue state restrictions went too far, but I cannot get that staggering death toll out of my head. And that’s not a random 319,000 people, it’s 319,000 of our most vulnerable citizens. The elderly. The infirm. People with immune disorders.
In the face of that wave of death, a wave of death created by a staggering amount of Christian fear, disinformation, and defiance—millions of the same people who created that culture now loudly demand that other people sacrifice for life.
It’s time for another caveat. When we talk about national movements, we invariably talk about generalities. Huge movements are made up of millions of people, and many of those millions have gone above and beyond the call of duty. They’ve spent their lives sacrificing for others, in ways large and small. They resist the hatred of the times, and even though I might disagree with some of their votes, they put me to shame in their service for others.
But the sad reality remains: When American culture burned with partisan hatred, all too many institutions of the American church fueled the fire. They fuel the fire to this day. There is a cost to this combat, and that cost is born in our ability to reach out to people outside our tribe and to have people believe us when we say that we care for them, that we want to see them flourish, and that we love their families—both red and blue.
Christian hate-preacher Greg Locke said this morning that children with autism actually suffer from demon possession.
— Hemant Mehta (@hemantmehta) January 23, 2022
"Your kid could be demonized and attacked, but your doctor calls it autism."
He added: "Ain't no such diagnosis in the Bible." pic.twitter.com/Q44WmGKCd7
Saturday, June 25, 2022
Program at the University of Illinois
In The Politics of Autism, I discuss the growing number of college students on the spectrum.
From the University of Illinois:
Incoming freshmen at the University of Illinois Urbana-Champaign this fall with autism spectrum disorder can take part in a new program that will offer a variety of support to help them succeed at college and beyond.
The Illinois Neurodiversity Initiative pilot program will offer autism-specific services to promote students’ academic, social and professional success..
Often used in reference to autism, neurodiversity also comprises conditions such as dyslexia and attention deficit hyperactivity disorder in which the brain functions, learns and stores information in nontypical ways.
Jeanne L. Kramer, the director of The Autism Program and the I-Ready virtual summer camp for college-bound high school students with autism, said the goal of I-N-I is to support neurodivergent freshmen from move-in day until they obtain jobs and graduate.
The program will address four types of skills or needs – academics, social skills, mental health and job skills.
Students in the program can participate in courses that promote self-awareness, self-advocacy and executive functions such as planning and organizing their coursework; a social mentoring group; and individualized weekly mental health check-ins with clinicians in the department of psychology.
While some freshmen with autism may have needed little help with academics and never had to study during high school, others may have received assistance through an individualized education plan or a 504 plan, a formal agreement with the school that protects students’ rights to reasonable accommodation, Kramer said.
Transitioning to a college environment where support services are decentralized and parents are not present to advocate on their behalf can make college particularly challenging for some of these students, Kramer said.
“Being successful academically at the university level requires many new social skills that most of these students won’t come by naturally,” Kramer said. “The first class that we’re getting started will teach participants strategies to help them succeed in their courses. These will include study skills and strategies such as joining a study group, communicating with their professors and keeping track of their deadlines for assignments and projects.”
Since many young people with autism have difficulty making social connections, I-N-I will offer a mentoring program in which peers will help participants practice the necessary social skills to connect with other students, clubs and organizations that share their interests.
Obtaining and maintaining employment also requires social skills and preparing participants for the working world will be a critical piece of the initiative, Kramer said. I-N-I will give participants opportunities to engage with potential employers through internships and other events.
“I have corporations that want to hire neurodiverse talent,” Kramer said. “The neurodiverse brain is wired to solve some of the world’s biggest problems, with the right support in place and the right people surrounding them. These are the minds that corporate America is really looking for.”
Two incoming freshmen who participated in the I-Ready virtual summer camp in 2021 were I-N-I’s first applicants, Kramer said. The goal is to have from five to 12 students in the inaugural cohort this fall.
“We want to keep it small because we really want to get to know these students and their families, and to understand and be responsive to their wants and needs,” Kramer said.
A support group for participants’ parents will be available as well.
“The question I get most often from parents is: ‘What does the U. of I. have to offer students with autism?’” Kramer said. “Everyone agrees the need is there, and now we’re at a point where we can do something about it.”
Students can apply to I-N-I online at https://illinoisaces.co1.qualtrics.com/jfe/form/SV_80MbZFe35LewwJ0.
The deadline for applications is July 15.
Friday, June 24, 2022
Polio
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. Examples include measles, COVID, flu ... and polio.
For the first time in nearly 40 years, health officials in the U.K. have identified a likely outbreak of polio in London.
So far, there have been no cases of polio detected directly in the U.K. But instead, scientists have discovered the outbreak through an indirect route. They've found multiple versions of the virus in sewage water, the U.K. Health Security Agency said Wednesday in a press release.
The risk to the general public is extremely low, the agency said, because the vast majority of people in Britain are vaccinated against polio during childhood – and therefore protected against infection.
But the agency encourages anyone not fully immunized to schedule an appointment right away.
Thursday, June 23, 2022
Military-Base Internship
In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities. Many posts have discussed programs to provide them with training and experience.
This waitlist-controlled cluster randomized clinical trial presents the results of PS + ASD [Project SEARCH Plus ASD Supports] for military dependent and connected youth with ASD. Following earlier findings regarding PS + ASD, this study expands upon that previous work by including a new population, military dependent and connected transition aged youth with ASD. Findings indicate that military dependent and connected youth who participated in PS + ASD gained competitive integrated employment at 60% despite the impact of the COVID-19 pandemic and economic downturn. In addition, these youth worked a mean of 24.42 h weekly and earned an average hourly wage of $9.38 at one year post baseline while the waitlist control group participants did not gain CIE. In addition, by 18 months, 58.3% of participants gained positions in federal employment. Implications of the study are discussed.
Wednesday, June 22, 2022
Autism, Antivax, and Influenza
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. And among those diseases could be COVID-19.
Unfortunately, Republican politicians and conservative media figures are increasingly joining up with the anti-vaxxers
Michael Kinch at Technology Networks
In the latter half of the twentieth century and despite exposure of duplicitous motives and data meant to stir up anti-vaccine notions, the DPT (diphtheria, pertussis and tetanus) and later the MMR (measles, mumps and rubella) vaccines each were claimed to cause developmental disorders such as autism. Both claims were shown definitively to be frauds foisted by hucksters motivated by greed…and yet persist to this day. Later still, the HPV vaccine (which prevents several sexually-transmitted forms of cancer) was discredited by a belief it would trigger a wave of teenage promiscuity, rumors that again were not based upon fact.
...
A newly published study suggests evidence of a far more troubling outcome with a dire potential to amplify the suffering. In a recent edition of The New England Journal of Medicine, a team of researchers from the University of California, Los Angeles revealed that changes in the uptake of the influenza vaccine were aligned with political views in general and skepticism of COVID vaccines in particular.
It is generally recognized that individuals in blue-trending states were more likely to embrace COVID vaccines while the populations of red-leaning states were more skeptical. A remarkable and troubling outcome is that these same views were soon applied to influenza vaccines. By comparing the rates of influenza immunization before versus after both the onset of the pandemic and the introduction of the first COVID vaccines in early 2021, the investigators measured the rates of influenza vaccination.
Whereas recognition of the COVID-19 pandemic in 2020 itself did not alter rates of influenza vaccination in the following autumn, the introduction of the COVID vaccines in early 2021 had a profound impact on adult vaccination rates. Those in red states became less likely to be vaccinated for influenza (than before the introduction of the COVID vaccines) whereas younger adult populations of blue states increased their vaccination rates. Thankfully, these diverging trends in influenza vaccination were not observed with older adults (age 65 and older), who are most susceptible to influenza morbidity and mortality.
As recently reported in The New York Times, anecdotal evidence suggests that COVID vaccine-skeptical parents are contributing to a further erosion of adherence to pediatric vaccination. Such irrationality is not particularly new given that the rates of MMR vaccination had been declining in the years before the pandemic. Indeed as I recounted in Between Hope and Fear, declining rates of vaccination have been contributing to a resurgence of measles in the United States
Tuesday, June 21, 2022
The Rock Sends a Message
Sunday, June 19, 2022
Yuh-Line Niou and Disabled Politicians
In The Politics of Autism, I write: "Support from the general public will be an important political asset for autistic people. Another will be their sheer numbers, since a larger population of identified autistic adults will mean more autistic voters and activists." Previous posts have discussed autistic officeholders and political candidates in New York, Georgia, Texas, and Wisconsin.
Hannah Getahun at Business Insider reports that New York Assemblymember Yuh-Line Niou is running for the US House and would be its first openly autistic member.
"I think we hear a lot of the first and only sometimes," Niou told Insider. "While it's an amazing thing, I think that what's more important is that there are people understanding that it's also a really lonely thing. And I think that it really is important to have representation because you need that lens to talk about everything in policy."
Niou, a progressive Democrat and Taiwanese immigrant who represents New York's 65th district, announced her run for Congress this year in a high-profile race against Bill de Blasio and Rep. Mondaire Jones.
Niou's diagnosis became well known after Refinery 29 published an article discussing it in 2020. After parents and kids reached out to her relating to her, she became aware of how talking openly about her autism helped to "drive away stigma."
Among full-time politicians, disabled Americans are underrepresented. People with disabilities make up 6.3% of federal politicians, compared to 15.7% of all adults in America who are disabled, research from Rutgers shows.
"People with disabilities cannot achieve equality unless they are part of government decision-making," said Lisa Schur in the 2019 Rutgers report.
...
"One of the things that I really like to say is when you put in a ramp, we're all less likely to trip," Niou said. "Consider one another, we all do better."
Saturday, June 18, 2022
Autistic Pride Day
To create more awareness about autism in society, Autistic Pride Day is celebrated on 18 June. The day draws attention to individuals with Autism Spectrum Disorder (ASD) and celebrates their identity as unique individuals.
The day is run by people with ASD instead of non-governmental organisations. The rainbow infinity symbol represents Autistic Pride Day as it characterises the diversity of people with ASD and the infinite opporunities within the autistic community.
What is autism or ASD?
According to the World Health Organisation, ASD “constitutes a diverse group of conditions related to development of the brain.” The disorder is characterised by difficulties in social interaction and communication. People with ASD often have atypical behaviours and patterns such as unusual reactions to sensations as well as difficulty in moving on from one activity to another.
According to the WHO, about one in 100 children is diagnosed with autism.
History of Autistic Pride Day
Autistic Pride Day was first marked in 2005 by the Aspies For Freedom (AFF) organisation so that people with ASD could celebrate their neurodiversity and differences. Since then, the day has been marked globally every year.
Friday, June 17, 2022
Johnson and Bigtree
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. And among those diseases could be COVID-19.
Unfortunately, Republican politicians and conservative media figures are increasingly joining up with the anti-vaxxers. Case in point, Senator Ron Johnson (R-WI), who appeared with notorious antivaxxer Del Bigtree.
Wisconsin, for the love of all that's holy, do better https://t.co/bMd7nXeWIs
— Aaron Rupar (@atrupar) June 17, 2022
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