Autism Mom Moves Away from Vaccine Hesitancy

 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.

Nancy Fellmeth at The Sacramento Bee:

My 30-year-old son, Chris, who lives with autism and was not caught up with his childhood vaccines, asked for the COVID vaccine when we got there. He was disappointed that he wasn’t in the right age group at that time and couldn’t get it.

Later, he had the opportunity to get the vaccine through the nonprofit We Embrace. In getting the vaccine, he felt like he became part of something bigger than himself, and that mattered to him.

After questioning other vaccines for years, I had a friend who participated in an early Moderna COVID vaccine trial, and I witnessed a concern for safety that upended my previous assumptions. Now I’m part of a vaccine side effects study that’s still following me six months after my second dose. It’s clear to me that those behind the vaccine care deeply about any effects that could show up months later.

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 The pandemic led me to believe that we should tip in favor of the community over the individual. The COVID vaccines, combined with social distancing and masks, are an opportunity for everyone to work together to get our lives back to a sense of normal.

DSM-III After 40 Years

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

Fred Volkmar at The Journal of Autism and Developmental Disorders:

Just over 40 years have now passed since the landmark 3rd edition of the American Psychiatric Association Diagnostic and Statistical Manual—DSM-III (American Psychiatric Association, 1980). Before DSM-III appeared, there was no official recognition of autism and both clinical work and research suffered as a result (American Psychiatric Association, 1980); In the first article in this section Rosen and colleagues (Rosen et al., 2021) summarize that the rational for autism’s official recognition rested on several important and distinctive lines of evidence and despite some problems with the definition it significantly advanced work in the area. As Rosen and colleagues discuss important issues and areas of diagnostic controversy remain even in the face of attempts to produce better revised definitions of the condition. These controversies have to do with issues like gender and cultural issues, the complexities of Asperger’s disorder, and the broader autism phenotype even while the most recent name change to Autism Spectrum Disorder has been well received. In the next article Fombonne and colleagues (Fombonne et al., 2021) note the important advances and challenges that have come with official recognition and epidemiological research. As they emphasize, challenges include culturally based work and continued surveillance studies of autism but compared to what we knew back in 1980 knowledge has advanced markedly. The quality of outcome studies began to increase in both number and sophistication. As Howlin reviews (Howlin, 2021), the evolving ways in which autism has been conceptualized have had significant importance in planning for adult services and evaluating changes in outcome. Similarly, as Vivanti and Messinger discuss (Vivanti & Messinger, 2021) the official diagnosis of the condition has led to a number of important attempts to develop psychological models and theories of autism that can both guide research and may also have important implications for clinical work. The growing consensus on best approaches to diagnosis of autism has also significantly advanced work in the area of genetics; this work, first begun in the 1970’s, has now emerged as one of the major areas of research interest in the condition and, as Thapar and Rutter discuss (Thapar & Rutter 2020), there have been important implications for understanding the heritability of autism and its diagnostic boundaries. Similarly work on the neuroscience of autism has been significantly advanced as we now understand much more about some important basic aspects of brain functioning in ASD and have seen autism emerge as, in many ways, the prototypic disorder for the study of the social brain (McPartland et al., 2021).

Antivax Chiropractors

 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.

Michelle R. Smith, Scott Bauer, and Mike Catalini at AP report that some chiropractos have pushed antivax misinformation.

They have touted their supplements as alternatives to vaccines, written doctor’s notes to allow patients to get out of mask and immunization mandates, donated large sums of money to anti-vaccine organizations and sold anti-vaccine ads on Facebook and Instagram, the AP discovered. One chiropractor gave thousands of dollars to a Super PAC that hosted an anti-vaccine, pro-Donald Trump rally near the U.S. Capitol on Jan. 6.

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 “People trust them. They trust their authority, but they also feel like they’re a nice alternative to traditional medicine,” said Erica DeWald of Vaccinate Your Family, who tracks figures in the anti-vaccine movement. “Mainstream medicine will refer people out to a chiropractor not knowing that they could be exposed to misinformation. You go because your back hurts, and then suddenly you don’t want to vaccinate your kids.”

The purveyors of vaccine misinformation represent a small but vocal minority of the nation's 70,000 chiropractors, many of whom advocate for vaccines. In some places, chiropractors have helped organize vaccine clinics or been authorized to give COVID-19 shots.

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Even before the pandemic, many chiropractors became active in the so-called “health freedom” movement, advocating in state legislatures from Massachusetts to South Dakota to allow more people to skip vaccinations.

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Nebraska chiropractor Ben Tapper landed on the “Disinformation Dozen,” a list compiled by the Center for Countering Digital Hate, which says he is among the small group of people responsible for nearly two-thirds of anti-vaccine content online. Tapper went viral with posts downplaying the dangers of COVID-19, criticizing “Big Pharma,” and stoking fears of the vaccine.

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On the West Coast, a chiropractic seminar and expo called Cal Jam, run by chiropractor Billy DeMoss, said in 2019 it raised a half-million dollars for a group led by one of the world’s most prominent anti-vaccine activists, Robert F. Kennedy Jr. Photographs posted online show DeMoss and others presenting Kennedy with a giant check for $500,000. The check’s signature line read “Chiropractic Rebels.”

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Beth Clay, executive director of the International Chiropractors Association, said in an email that the group “takes no official position” on vaccines, but when asked whether its formal policy statement had been rescinded, she replied that it “technically” remained official. The group’s policy statements were scheduled to be reviewed in the next 18 months, she said.

Clay has been an anti-vaccine activist for decades, DeWald said. In articles for the website of Kennedy’s group in 2019, she downplayed the danger of measles and pushed a link between vaccines and autism, a claim that is unsupported by science and has been widely debunked.

Home Care and Congress

The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for adults with intellectual and developmental disabilities. Home and Community-Based Services (HCBS) are particularly important.

From Katherine Tully-McManus and Andrew Desiderio at Politico:

As Democratic leaders work to shave trillions off of their social spending bill in an effort to win centrist support, Sen. Bob Casey (D-Pa.) is circulating a letter signed by 100 top economists pushing to keep investments in home care. The letter calls for negotiators to include $250 billion for home caretaking, which is already just over half of the originally proposed $400 billion backed by advocates. Read the letter here.

From the letter:

This historic investment in HCBS will strengthen the economy, both by creating jobs and by allowing people who are currently providing unpaid care to loved ones the support they need to rejoin the labor force. An analysis of the Senate bill found that expanding HCBS eligibility to allow an additional 3.2 million low-income seniors and people with disabilities would create 500,000 new and essential positions to provide home-care and allow 1.1 million unpaid caregivers to return to work. 

Even as home care is quickly growing into one of the largest occupations, there are even more family caregivers providing care to the elderly and people with disabilities. There are almost 20 million informal caregivers to people over 65, and they are disproportionately women, most often spouses and daughters. Without support, caregiving can have negative effects on caregivers’ physical and mental health, as well as limiting caregivers’ ability to remain in the workforce, while public investment can actually improve caregiver mental health and boost female labor force participation. Recently, the US has seen female labor force participation stagnate relative to many other developed countries. By alleviating caregiving burdens, one of the key constraints to women’s workforce participation, investing in home care will help the US maintain a competitive workforce. 

Vaccines and Republicans

 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. 

Alan Greenblatt at Governing:

There has always been resistance to vaccines, starting with the earliest smallpox vaccines of the 18th century. In recent years, vaccine hesitancy occurred on both the left and right, with low rates of measles vaccination in liberal enclaves such as Boulder, Colo., and Marin County, Calif. One of the most prominent vaccine skeptics is Robert F. Kennedy Jr., a scion of the liberal dynasty. “Prior to the pandemic, anti-vaccine activists fell roughly evenly along political party lines,” says Jonathan Berman, author of the book Anti-vaxxers.

But as anti-vaccine activism has grown during the pandemic, Berman notes, it’s become more partisan in nature. Opposing mandates and insisting on individual freedom to choose are messages that have resonated strongly among conservatives, particularly libertarians and white evangelicals.

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At this point, with the vast majority of COVID-19 deaths occurring among the unvaccinated, it’s Republican areas that are having the worst problems. As of the middle of last month, 53 percent of people in counties that voted for President Biden were fully vaccinated, according to the Kaiser Family Foundation, compared to 40 percent of Trump county residents. The death rate in counties that Trump carried by 70 percent or more has been nearly five times as high as counties where he carried less than a third of the vote, according to health analyst Charles Gaba.

The preponderance of COVID-19 deaths since the spring has occurred in the solidly Republican South, with Texas and Florida alone responsible for 30 percent of the deaths since June 15. People are twice as likely to die in rural areas, now Republican strongholds, than cities.

Steve Friess at Newsweek:

Meanwhile, signs are also mounting about the partisan nature of growing opposition to vaccines and vaccine mandates, and the shift from medical to libertarian reasoning. Asked in a survey by the Kaiser Family Foundation whether getting the COVID vaccine is a matter of "personal choice" or "part of everyone's responsibility to protect the health of others," more than 70 percent of Republicans saw it as a personal choice vs. just 27 percent of Democrats. And according to a Twitter analysis by Renee DiResta, research manager of the Stanford Internet Observatory, reported in The New York Times, even anti-vaxxers whose opposition in the pre-COVID era was focused on concerns about autism and toxins are now evolving their messaging to talk about freedom and "vaccine choice."

 

Video: Lindsey Graham booed and heckled by dozens of GOP activists after he says they should consider getting vaccinated. https://t.co/74odEzL87w

— Will Sommer (@willsommer) October 4, 2021

Video: Lindsey Graham booed and heckled by dozens of GOP activists after he says they should consider getting vaccinated. https://t.co/74odEzL87w

— Will Sommer (@willsommer) October 4, 2021

Autism-Friendly Workplaces

In The Politics of Autism, I discuss the employment of people on the autism spectrum.

Michael Bernick at Politico:

The true autism-friendly workplace is one that incorporates flexibility and patience, giving the worker time to learn skills and develop any needed workplace behaviors they might lack.

How do we ensure that people with autism find opportunities that meet these requirements? What’s worked best for Will and other AASCEND members is unglamorous, intensive, one-to-one placement and retention services. In California, these are offered by DDS and the Department of Rehabilitation, as well as regional agencies that work with nonprofits such as ARC, Goodwill, Best Buddies and Pomeroy Center. This network, when operating effectively, can guide workers through the employment process by identifying job leads, negotiating with employers, informing employers about government wage subsidies and on-the-job training funds, and providing ongoing job coaching and problem-solving support.

These services draw on the main elements of the Individual Placement and Support model, an approach developed by a team associated with Dartmouth Medical School in the 1990s that emphasizes intensive, individualized assistance in job placement and retention. (The model was originally targeted at people with mental illnesses but has been adapted for other populations with high unemployment rates.) In a report issued last December, MDRC, the leading national employment research entity, documented the value of the ISP model across the majority of the programs studied, citing examples of what success looks like: rapid job searches, follow-along support, coordination between program staff and mental health professionals and, most of all, small caseloads of fewer than 20 job seekers.

The problem right now is that, among intensive job search programs, the quality of services can be quite uneven. Job counselors and job coaches often come to their positions with little training or direction. They often are given caseloads of 60 to 70 job seekers. They might have four to five hours a month to spend on each worker — not nearly enough to assist in any serious way. Without knowledge of the job placement process, more than a few job counselors today will default to online job boards, which for most adults with developmental differences are black holes, where applications go to disappear.

Funding for this system is split between the federal government and state governments, with programs operated by states and regional entities. To really help adults with autism, the Biden administration and state governments need to prioritize improving and professionalizing this existing intensive employment services system. That will mean different things in different areas. To serve their clients better, some states will want reduced caseloads, improved staff wages and additional training. The role of the job counselor or coach should be valued and decently compensated, and candidates should have a strong sense of mission and craft.

Antivaxxers and Social Media Workarounds

 In The Politics of Autism, I look at the discredited notion that vaccines cause autism.  Twitter, Facebook, and other social media platforms have helped spread this dangerous myth.

Kiera Butler at Mother Jones:

There is an article on “Merck Fraud” from Robert F. Kennedy Jr.’s anti-vaccine group Children’s Health Defense. There is a “vaccine guide” that warns of harmful additives and hidden adverse reactions to immunizations. There is a site that urges people to be part of the COVID-19 vaccine “control group” by not getting vaccinated; there is a place where you can purchase a tank top that says “separate pharma & state.”

If the content in these links were posted on Instagram itself, they could trip the platform’s misinformation algorithms because they contain factually incorrect statements. (The vaccine guide link, for example, suggests that vaccines cause autism, which isn’t true.) If the algorithm picked up on this, the account could be suspended or even banned. But Janny Organically and a host of other Instagram users have figured out a clever workaround: They’ve found sites that allow you to curate a list of links under one tidy and unassuming URL. Janny Organically uses one of two very popular link curating platforms: a Milwaukee-based company Campsite.bio. Another is Linktree, an Australian company. Campsite.bio doesn’t share much about its size, but its client roster includes some big names: Dell, USA Softball, and the popular WNYC radio show Radiolab, to name a few. According to Linktree’s website, it has 8 million clients and offices in Sydney and Los Angeles. Instagram users also have the option of using a link-list service called Linkin.bio, which is hosted by Instagram itself.

I counted dozens of popular anti-vaccine Instagram accounts that use link lists, including a chiropractor in San Diego with 33,000 followers, an essential-oils-peddling homeschool mom in Tennessee with 101,000 followers, and an Australian podcaster with 80,000 followers. Some organizations use them, too: A powerful anti-vaccine advocacy group called Freedom Keepers United uses a Campsite link on its Instagram account, which has more than 66,000 followers. Another anti-vaccine group, Moms for Liberty, uses Linktree in several of its local chapters.

Direct Support Workforce

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  One is a shortage of caregivers and direct support professionals, which is likely to get worse.  

From ANCOR:

The State of America’s Direct Support Workforce Crisis 2021 summarizes the findings of ANCOR’s survey of providers, which we fielded for a five-week period beginning in August 2021. The survey, which followed up on our 2020 research, garnered 449 responses and sought to understand the human and financial impact of the direct support workforce crisis. The survey measured the same dimensions we asked about in 2020, along with additional measures targeted specifically to the impact of COVID-19 on DSP hiring and retention.

Key findings from ANCOR’s 2021 State of America’s Direct Support Workforce Crisis survey include that:

• 77% of providers are turning away new referrals, a 16.7% increase since the beginning of the pandemic.
• 58% of providers are discontinuing programs and services, a 70.6% increase since the beginning of the pandemic.
• 81% of providers are struggling to achieve quality standards, a 17.4% increase since the beginning of the pandemic.
• Nearly 3 in 10 providers report spending at least $500,000 annually on costs associated with high turnover and vacancy rates.
• 92% of providers report that the COVID-19 pandemic continues to complicate their ability to recruit and retain qualified direct support professionals.

To say the least, these results are troubling. But for those of us committed to moving beyond the direct care workforce crisis once and for all, it is imperative that we understand the true impacts of the crisis and the ways in which it is colliding with the COVID-19 pandemic. For these reasons, we invite you to download The State of America’s Direct Support Workforce Crisis 2021 and read lead author Lydia Dawson’s analysis today.

Download the State of America’s Direct Support Workforce 2021 issue brief today.

Universalizing Disability Rights

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

Ari Ne'eman at NYT:

[A]ctivists may need to consider universalizing the disability movement, presenting disability rights as broad protections available to all Americans, not just those who self-identify as disabled.

There is some precedent for this. Conceptually, scholars have long promoted a “social model” of disability, which presents disablement as emerging out of the interaction between an individual and their environment. Just as dyslexia would be unlikely to be diagnosed in a pre-literate society, so too are other forms of disablement only noticeable when context makes them important.

The experiences of those with at-risk diagnoses during Covid offers a powerful validation to what at first seems like abstract theory. By one estimate, nearly half of American adults have a chronic condition that places them at greater risk. Their medical issues existed before Covid, many even met the technical criteria for A.D.A. protections — but they are now more relevant than ever before.

Disability legal protections are similarly flexible. When the Supreme Court issued a series of opinions restricting the definition of disability, leaving many people with less obvious impairments out of the scope of nondiscrimination law, advocates convinced Congress to pass the A.D.A. Amendments Act of 2008. The law ensured the A.D.A..’s definition of disability was interpreted broadly.

There are other examples to build on. Laws like the Family and Medical Leave Act (F.M.L.A.) and HIPAA’s privacy protections (under the Health Insurance Portability and Accountability Act) overwhelmingly benefit disabled people — but because they create rights available to all, they are thought of as universal, not targeted, protections. Similarly, the Affordable Care Act’s prohibition on insurers charging more to those with pre-existing conditions represented one of the greatest disability policy achievements in a generation. Yet few saw it as a gift only for the disabled because proponents sold it to the public as a universal benefit that helped everyone.

Not every disability policy priority can be recast in such universalist terms. Sign language interpreters or supported employment services could never be replaced by broad and diffuse benefits spread across the entire population. Relatively few people need these things, and those that do need them to be financed with a level of resources far above what others get. In such cases, the framing of an oppressed minority group is useful. Even if the disability movement is to expand beyond identity politics, it won’t be able to leave them entirely behind. The prism of identity remains essential for many whose disability experiences are defining.

Still, the disability rights movement could position many other disability priorities as public goods, akin to clean air or privacy rights. Laws like the A.D.A. would still serve as a backstop for the minority that identifies as disabled, but could also come to be seen as useful protections for a larger public, much like HIPAA or F.M.L.A.

National Autism Indicators: Mental Health

The Politics of Autism discusses health care, and explains that autism services can be complicated, creating difficulties for autistic people and their families. 

From Drexel University:

 KEY FINDINGS

Autistic children and adults have high rates of co-occurring mental health conditions. Treatment or counseling from mental health professionals was common, however mental health services were difficult to access and parents of autistic children often report needing more mental health care. Psychotropic medication use is common in autistic children and adults, especially in those with co-occurring mental health conditions such as depression. Mental health conditions are also the most common cause for hospitalization in autistic children and adults. Autistic children with unmet need for mental health care were less likely to participate in their community than children who had no unmet need for mental health care.

OVERVIEW

The purpose of this report is to catalogue indicators of mental health and mental health care to highlight areas of needed improvement in practice and policy. Mental health care is an urgent priority and this report documents barriers that individuals and families face when trying to access mental health care. Good health and wellbeing require effective interventions and supportive policy to ensure that mental health needs of autistic children and adults are effectively addressed.

SUGGESTED CITATION

Rast, Jessica E., Garfield, Tamara, Roux, Anne M., Koffer Miller, Kaitlin H., Hund, Lisa M., Tao, Sha, Kerns, Connor M., Rosenau, Kashia A., Hotez, Emily, Anderson, Kristy A., Shattuck, Paul T., and Shea, Lindsay L. National Autism Indicators Report: Mental Health. Philadelphia, PA: Life Course Outcomes Program, A.J. Drexel Autism Institute, Drexel University, August 2021

From the report: 

Forty-four percent of autistic students reported frequent anxiety or depression in their freshman year. Twenty-two percent of all other freshman students reported the same. Autistic students with frequent anxiety or depression were more likely to rate their emotional health below average than their peers without autism (27% versus 16%). Nearly three-quarters of autistic students reported being overwhelmed by all they had to do. Mental health conditions were more common in this group than in the overall group of autistic students, with 62% reporting a psychological disorder. However, the rate of ADHD was the same, while still higher than peers without autism

YouTube to Take Down Videos Linking Vaccines to Autism

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.  Twitter, Facebook, and other social media platforms have helped spread this dangerous myth.

Dan Milmo at The Guardian reports that YouTube will take down videos with vaccine misinformation, including claims that they cause autism.

Matt Halprin, the global head of trust and safety at YouTube, said vaccine misinformation was a global problem and had spilled over from the spreading of falsehoods about Covid jabs.

“Vaccine misinformation appears globally, it appears in all countries and cultures,” he said.

Halprin added that falsehoods around the measles, mumps and rubella (MMR) vaccine, which has been wrongly attributed to causing autism, were an example of the misinformation YouTube will target.

“There is still a lot of challenges around MMR and people arguing whether that causes autism. And as we know, the science is very stable that vaccines do not cause autism,” he said.

Halprin said the ban would also apply, for instance, to content that claims vaccines cause cancer, infertility or contain microchips, the latter having gained prominence as a falsehood about Covid jabs.

In 2019, a major study affirmed that there was no link between autism and MMR, in the wake of a pre-Covid upsurge in vaccine scepticism, fanned by social media and anti-government populism. A paper in the journal Annals of Internal Medicine, which is published by the American College of Physicians, found “no support for the hypothesis of increased risk for autism after MMR vaccination in a nationwide unselected population of Danish children”.

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On Wednesday, a search under the terms “MMR vaccine autism” produced a page of results containing rebuttals of any link between the vaccine and autism, including a video entitled “Vaccines and autism: how the myth started”. However, the page also includes a TV interview with the actor Robert De Niro in which he states that Vaxxed, a documentary directed by Andrew Wakefield – one of the key figures in promoting discredited links between MMR and autism – is a film that “people should see”. De Niro was being interviewed in 2016 after his Tribeca film festival pulled a screening of Vaxxed in the wake of a backlash against the film.

CEO Lessons

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

Once they start receiving services, parents have to become case managers, coordinating the work of multiple providers. Some services take place in the home, but others (especially speech and occupational therapy) require a trip to an office far away. "Appointments. Lots of appointments," says one autism parent who drives two hours from a home in Rolla to a care center in Columbia, Missouri.

A CEO has the money and skills to do these things. But the lessons from a CEO are only partially transferrable to others.  Constraints of time, money, and location may severely limit options. 

At Forbes, Jennifer Palumbo writes:

Alison French is the CEO of Emerged Inc., a SaaS healthcare technology company based in San Diego. French is also a mother of three and a Marine Corps spouse who has spent her career working remotely. This has given her an inherent understanding of the importance of balancing and aligning personal and business life.

"E-commerce and digital marketing became my passion because I loved the analytics and attribution that came with this niche," French said. "My skill set was in high demand, and it allowed me to choose the jobs that fit my lifestyle (military spouse with children, and the need to move every 2-3 years). I quickly discovered that startups gave me the freedom of location that I needed, but, more importantly, I got to dive into a variety of different roles. I realized I loved managing all facets of a business, not working in a single silo. This desire to lead a business is ultimately what led me to Emerged."

Emerged began in 2020, which was also the year French's daughter received an autism diagnosis. As a fellow working parent with a neurodivergent child, we spoke about what skills as a CEO and entrepreneur helped her advocate for her child.

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Only Accepting an A-Team: "I'm very open with my team that I only accept A-level performance. I'm quick to fire employees that underperform. In this case, the team is the extended circle of occupational therapists, speech-language pathologists, teachers, psychologists, childcare." French recommends that you be prepared to fire quickly if you don't see your child progressing within reasonable milestones. Moving on and finding new care providers is hard, but you will see a transformation once you get the right group of people supporting your child.

Evaluating the ROI: "Evaluating the ROI for medical care is just like assessing the ROI on any business investment," advised French. "Medical care can be expensive, especially when electing to go out-of-network for the care your child needs. But it's not just the financial cost you need to consider. You also need to factor in the price of time associated with care when taking your child to recurring medical appointments. These two areas can be expensive for a family, and ensuring you're getting the ROI is critical."

Pausing a Study of Autism Genetics

In The Politics of Autism, I explain:

When a pregnancy is under way, doctors can detect certain kinds of disorders, but neither amniocentesis nor any other prenatal test can currently tell us whether a fetus will become autistic. Suppose that such a test did exist. “The best case use of a prenatal test at the moment would be if you could say to a parent, your child has got an 80 percent likelihood of autism and so once the baby's born, we would like to keep a close eye on that child in case they need extra support like speech therapy or social skills training or some sort of behavioral approach,” says leading autism scientist Simon Baron-Cohen. But would the “best case use” be the most common? When amniocentesis indicates Down Syndrome, most mothers choose abortion. A study of autism parents in Taiwan found that just over half would abort if a prenatal test indicated that their next child would be autistic. We cannot be sure what the figures would be if such tests were available in the United States, but it seems likely that a large share of autism pregnancies would end in abortion.

Katherine Sanderson at Nature:

A large, UK-based study of genetics and autism spectrum disorder (ASD) has been suspended, following criticism that it failed to properly consult the autism community about the goals of the research. Concerns about the study include fears that its data could potentially be misused by other researchers seeking to ‘cure’ or eradicate ASD.

The Spectrum 10K study is led by Simon Baron-Cohen, director of the Autism Research Centre (ARC) at the University of Cambridge, UK. The £3-million (US$4-million) project, which is funded by the London-based biomedical funding charity Wellcome, is the largest genetic study of ASD in the United Kingdom. It aims to collect DNA samples, together with information on participants’ mental and physical health, from 10,000 people with autism and their families. This will be used to study the genetic and environmental contributions to ASD, and to co-occurring conditions such as epilepsy and gut-health problems. “If we can understand why these co-occurring conditions are more frequent in autistic people, that could open the door to treatment or management of very distressing symptoms,” says Baron-Cohen.

But soon after the study’s high-profile launch on 24 August, people with autism and some ASD researchers expressed concern that it had gone ahead without meaningfully consulting the autism community. Fears about the sharing of genetic data and an alleged failure to properly explain the benefits of the research have been raised by a group called Boycott Spectrum 10K, which is led by people with autism. The group plans to protest outside the ARC premises in Cambridge in October. A separate petition against the study gathered more than 5,000 signatures.

Damian Milton, a researcher in intellectual and developmental disabilities at the University of Kent in Canterbury, UK, is one of those who signed the Boycott Spectrum 10K petition. Milton has been diagnosed with Asperger’s syndrome, a form of ASD. He says it is not clear how the study will improve participants’ well-being, and its “aim seems to be more about collecting DNA samples and data sharing”.

As a result of the backlash, the Spectrum 10K team paused the study on 10 September, apologized for causing distress, and promised a deeper consultation with people with autism and their families.