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Thursday, September 23, 2021

Early Internvention and Unintended Consequences


Infants who seemed headed for autism spectrum disorder (ASD) had milder symptoms as toddlers if their caregivers were subject to a social communication intervention when infants were just 1 year of age, a randomized clinical trial found.

Infants whose families participated in the intervention exhibited significantly milder ASD symptoms 12 months later compared to those in the control group. They also had lower odds of being diagnosed with ASD by an independent clinician at age 3 years (6.7% vs 20.5%, OR 0.18, 95% CI 0.00-0.68), according to the study group led by Andrew Whitehouse, PhD, of the University of Western Australia.

"To our knowledge, this randomized clinical trial is the first to demonstrate that a preemptive intervention for infants showing early signs of ASD led to a small but enduring reduction in ASD symptom severity and reduced odds of ASD diagnosis in early childhood," the researchers wrote in JAMA Pediatrics.

ASD can be detected at 18 months and reliably diagnosed at age 2, but is often not diagnosed until children are much older, according to the CDC.
What makes this complicated, however, is that social communication skills are one of the main things measured when someone is assessed for an autism diagnosis. The fact that this therapy boosted those skills meant that children scored lower on those parts of autism assessments, which in turn meant they didn’t meet the criteria for an autism diagnosis. In fact, the study shows that this therapy reduced autism diagnosis by two-thirds. It is worth noting that the numbers leading to this effect are quite small, but significant nonetheless.

That raises questions that should give us pause. The main concern for us in the UK is that support only follows diagnosis. Even if the therapy allows autistic people to have a better start in life, the system will need to change to ensure support is there if and when it is needed.

We’re working to fund research to create a system where support is based on needs and not on diagnosis, but we’re not there yet. This study itself shows that early, timely and sensitively designed support makes a difference, so what impact could the delay of support have in the long term?

We also have to ask what else a child may miss out on if they go on to be diagnosed with autism at a later date. For many autistic people, autism is part of their identity. As it stands under the current system, delaying a diagnosis could mean they miss out on a level of peer support and understanding that they could otherwise benefit from.

Wednesday, September 22, 2021

Antivax Talk Radio

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.  

Several prominent antivax talk-radio hosts have died of COVID.

In terms of the spread of misinformation, talk radio’s impact is unappreciated, Angelo Carusone, president of Media Matters, a progressive media watchdog, said.

“It is clearly a driving force. A lot of people understandably focus on online, especially when it comes to anti-vax information. But the reality of it is, when the dust settles, I think what we’re going to find is that the real source of a lot of the most damaging anti-vax messaging was driven largely by traditional media: talk radio and traditional rightwing forces like Fox News,” he said.

“When we think about talk radio, the reason it has had such influence is the reach. It still is reaching the largest number of people. Fox [News] is going to reach a couple of million people a day. Talk radio is reaching 40 million, 60 million people depending on the day, maybe even more.

“The guys who are dying, you could treat them as [having] small radio shows, but they have really high concentration in their communities.”
...

“Talk radio has always bashed elites and the mainstream media, and I think it is an extension of that to be questioning the public health professionals who are the ones handing down, seemingly from on high, these ever changing public health edicts tied to masks and vaccines and other things,” said Brian Rosenwald, a scholar-in-residence at the University of Pennsylvania and author of Talk Radio’s America: How an Industry Took Over a Political Party That Took Over the United States.

While radio hosts might be the public voice of that skepticism, it is a common misconception that audiences are “puppets”, Rosenwald said. Instead, it’s radio hosts who might find themselves “entrapped by what the audience wants to hear”.

At the beginning of the pandemic, many rightwing talk radio hosts were publicly skeptical, and, not wishing to lose listeners, and with them advertisers, they had backed themselves into a corner.

Tuesday, September 21, 2021

Eric Trump to Speak at Anti-Vax Event

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.  


Will Sommer at The Daily Beast:
Donald Trump’s son Eric Trump will give the keynote speech next month at an anti-vaccine conference, marking the latest alliance between the Trump family and the GOP’s fringiest elements.

Trump is set to speak at the Truth About Cancer Live! convention between Oct. 22 and 24 in Nashville, joining a speakers’ lineup that includes some of the most prominent promoters of disinformation about vaccines, as well as leading figures in the QAnon conspiracy theory movement.

The conference is the brainchild of Ty and Charlene Bollinger, two major promoters of anti-vaccine disinformation who have made tens of millions of dollars promoting both alternative health cures for cancer and vaccine fears. The Bollingers have dubbed the coronavirus vaccine “that abominable vaccine,” according to a Center for Public Integrity report, and sell a $200 video series promoting vaccine fearmongering on their website.

Trump confirmed his scheduled speech in an email to The Daily Beast.

“I am not there to talk about vaccines,” Trump wrote. “I am in Nashville to talk about the accomplishments of the 45th President of the United States.”


 

Monday, September 20, 2021

Ruth Christ Sullivan, RIP

In The Politics of Autism, I discuss parent activism and autism organizations.

Ruth Christ Sullivan, co-founder of the Autism Society, has passed.  Her obituary:

Ruth Christ Sullivan, Ph.D., age 97, died in Huntington, W.Va., on Sept. 16, 2021. Ruth Sullivan was a parent, expert and pioneer in the field of autism who is recognized globally. She was an influential lobbyist and speaker who not only made autism far better known to the public, but improved conditions for people with autism worldwide. She co-founded the Autism Society of America in the 1960s and served as its first elected president. She lobbied for the inclusion of autism in the landmark 1975 IDEA law, which mandated that all American children receive a free public education, and she was the chief author of the law's autism-specific language. She founded and ran Autism Services Center in Huntington from 1979 to 2007, and she successfully lobbied for state funding for the West Virginia Autism Training Center at Marshall University. After raising seven children, she earned the nation's first autism Ph.D., from Ohio University, at age 60. By the time she retired at age 83, she had received dozens of awards and had been invited to speak around the world, including at the U.S. Centers for Disease Control and Prevention, and in Argentina, Kuwait, Ireland, Australia, Namibia and Mexico, among others.
She was a loving mother and a born leader whose unwavering focus and determination joined a keen interest in kindness and fairness, especially toward society's most vulnerable. The oldest of seven children, Ruth Marie Christ was born on April 20, 1924, to a rice-farming Cajun French-German family in Mowata, La. During World War II, she earned a Registered Nurse degree from Charity Hospital in New Orleans in 1943, then joined the Army Nurse Corps, working at Fort Sam Houston in San Antonio, Texas. After the war, she moved back to live with her family in Lake Charles, La., and became a public health nurse. She later earned a B.S. in Public Health Nursing and in 1952 an M.A. in Public Health Administration, both from Columbia University Teachers' College, where she also met her future husband, William P. "Bill" Sullivan, a fellow graduate student and U.S. Navy veteran who later received his doctorate from Columbia. They married in December 1952 and in the next 11 years had seven children. Bill Sullivan was a professor of English at Marshall University until his retirement.
In 1962, they began to realize that their fifth child, Joseph, was not a normal little boy. In 1963, he was diagnosed with classical autism by a psychiatrist who told them the boy would "always be unusual." Ruth Sullivan began to research, network and organize. In 1965, she co-founded the National Society for Autistic Children, now known as the Autism Society of America. In Huntington, W.Va., where the family moved in 1968, she started an Information and Referral Service to answer the queries she was receiving from around the world. She won a $500,000 grant from the U.S. government to publish the first directory of autism programs in the nation. In 1979, she founded Autism Services Center (ASC), an agency in Huntington, W.Va., that eventually grew to provide services to thousands of people with autism and developmental disabilities in West Virginia. In 1984, she successfully lobbied the West Virginia legislature for funding to start the Autism Training Center at Marshall University. In 2002, she also founded NARPAA, a national association for residential providers of autism services.
In 1988, Sullivan was contacted by the producers of the movie "Rain Man." Actor Dustin Hoffman met with her and Joseph prior to and during filming, and for the role of Raymond he studied outtakes from a documentary about Joseph at age 24, "Portrait of an Autistic Young Man." Along with the other parents he consulted, Hoffman thanked "Joe Sullivan and his mother" when accepting the Oscar for the film in 1989, and she was listed in the final credit of the movie. "Rain Man" spurred many television appearances, with mother and son interviewed by Oprah, Larry King, Maria Shriver and CBS Morning News, among others, as well as a four-page article in People magazine. Sullivan often said the film did more to make autism known than all her years of work in the field.
Ruth was a longtime parishioner of St. Joseph Catholic Church in Huntington. Throughout her life, she was committed to "making every place better because you have been there." Her gift was instilling this commitment in others through her own example. She was preceded in death by her husband, William P. Sullivan, Ph.D.; her father, Lawrence Christ, her mother, Ada Matt Christ, her brother, Robert Christ, her sister Jeannette "Dena" Nodier; her brothers-in-law Jerry Buckingham, Ferdinand "Fred" Nodier, Joseph Sullivan and John Sullivan; her sisters-in-law Jackie Singer Christ, Madeleine Verdiere Sullivan and Catherine Sullivan. She is survived by her children, Julie Sullivan (David Winn), Christopher Sullivan (Jerri Tribble), Eva Sullivan (Frank Conlon), Larry Sullivan, Joseph Sullivan, Lydia Sullivan and Richard Sullivan; her siblings, Charles "C.J." Christ, Geraldine Landry (Lester), Frances Buckingham, Julie Miller (Remy); and dozens of grandchildren, great-grandchildren, nieces and nephews. Services will be announced at a later date. Klingel-Carpenter Mortuary is assisting the family with arrangements. In lieu of flowers expressions of sympathy may be made to Autism Services Center in Huntington or the West Virginia Autism Training Center at Marshall University. Family Guestbook at Klingelcarpenter.com To plant a beautiful memorial tree in memory of Ruth Christ Sullivan, Ph.D., please visit our Tribute Store.

 


Published by Klingel-Carpenter Mortuary on Sep. 19, 202


Sunday, September 19, 2021

Caregivers

 In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all. 

 In the Bay Area, Christopher Egusa reports at KALW-FM:

A June 2021 study from the CDC found that 70% of parents and unpaid caregivers of adults suffered mental health issues during the pandemic, including anxiety, depression, trauma, and suicidal thoughts. In fact, family caregivers like Fiona were eight times more likely to contemplate suicide than others.

...

The problem starts with basic math. Changing demographics like an aging baby boomer generation means that over the next decade the US is going to need more care workers. Like, 4.7 million more, according to a report by the Paraprofessional Research Institute. That’s the most of any occupation. more than the second and third places combined.

But the number of care workers is actually shrinking, as workers leave the industry. The reason? Caregiving jobs are of such poor quality. Mostly minimum wage or below, offer few benefits, and provide minimal training. Nationally, one in five care workers live below the poverty line, and over half receive public assistance.
...

The end result is an industry that experiences shockingly high turnover. Some estimates put it at over 60%. This is a problem when one of the most important aspects of a caregiver’s work is developing a trusting relationship with their client and learning their specific needs. The revolving door of care workers means that cases like Fiona and Linus get stuck in limbo for months or years, unable to find the consistent care they need.
...

Care workers are 87% women, 49% POC, and almost a third immigrants, and some advocates argue that the poor job quality speaks to a long history of oppression and discrimination.

Saturday, September 18, 2021

Antivax Radio Hosts Die of COVID

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.  

 Tommy Beer at Forbes:

Bob Enyart, a conservative radio talk show host in Denver who urged listeners to boycott Covid-19 vaccines and vowed never to get a shot, has lost his life after contracting the virus, one of his co-hosts announced earlier this week, in what is but the latest instance of a right-wing radio pundit succumbing to the coronavirus.

...

Dick Farrel, a Florida-based conservative radio host and anchor on Newsmax TV who had called vaccines “bogus bullsh*t” and characterized Dr. Anthony Fauci as a “lying freak,” died on August 4 due to complications from Covid-19.

In late August, Marc Bernier, who spoke out against Covid-19 vaccines and even called himself “Mr. Anti-Vax” on his radio show from Daytona Beach, died after battling the virus for weeks.

Jimmy DeYoung Sr., a religious radio broadcaster from Tennessee who published an interview advancing a conspiracy theory that the Pfizer vaccine would make women sterile and asked if the virus and vaccines were forms of governmental control, died on August 18 after contracting Covid.

Phil Valentine, a popular conservative talk radio host in Nashville who voiced vaccine skepticism and mocked Democrats’ efforts to encourage people to get the jab, was killed by the virus in mid-August after reportedly telling his brother he regretted not being a “more vocal advocate” of getting inoculated.


Friday, September 17, 2021

Learning Loss and COVID Shutdowns

 In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all. 

Amanda Morris at NYT:

Education experts have said that it may take months or years to fully grasp the learning loss that children have suffered from remote schooling during the pandemic. But many of the parents and guardians of the roughly 200,000 students with disabilities in New York City say they have already seen drastic damages from their children’s loss of their usual therapies, services or learning accommodations.

Each school year presents myriad challenges for the thousands of parents who file for special education services. But the shift to remote learning has “exacerbated pre-existing achievement gaps” for children with disabilities, according to a recent report by the state’s comptroller’s office.

According to that report, autism is the state's fourth-largest special-ed classification, accounting for nearly 10 percent of students with IEPs

The NYT story continues:

Nasheema Miley’s autistic, largely nonverbal son, Marcellus, was saying a few words before the pandemic, thanks to the work of speech therapists at his school in Harlem.

When classes went remote, Marcellus, 5, stopped having in-person speech therapy sessions three times a week and occupational therapy twice a week. Instead, Ms. Miley, 27, said she got a phone call once a week from both therapists.

During this time, he stopped speaking completely, she said.

Marcellus went back to school full time last fall and has started making progress again, but his mother thinks he is still behind.

The family thought about filing a complaint or lawsuit, but Ms. Miley said she is unable to afford a lawyer.


Wednesday, September 15, 2021

Left, Right, and the Antivax Movement

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.  


UnfortunatelyRepublican politicians are increasingly joining up with the anti-vaxxers.  Recent examples include a member of the House COVID subcommittee and a crackpot who is seeking the party's US Senate nomination in OhioCalifornia gubernatorial candidate Larry Elder gave a radio platform to Andrew Wakefield.

Orac (David Gorski) notes that there was once a stereotype that antivaxxers were mostly on the left.

In actuality, this perception of a strong leftward political bias in the antivaccine movement was never really accurate. It’s long been known that antivaccine views tended to be the pseudoscience that crossed political boundaries. Indeed, there has always been a libertarian and right wing component to the antivaccine movement, with a very strong strain of antivaccine views on the right as well. Examples included General Bert Stubblebine III’s Natural Solutions Foundation, far right libertarians, and others who distrust the government, including government-recommended vaccine schedules, an observation that led me once to ask in 2013 why the antivaccine movement seemed so at home among libertarians. Indeed, at the right-wing Libertarian FreedomFest in 2012, I was privileged to watch a debate between Julian Whitaker and Steve Novella about vaccines. At the debate, vaccine pseudoscience flowed freely from Whitaker in a most embarrassing fashion, and I couldn’t help but note that FreedomFest that year featured two screenings of Leslie Manookian’s antivaccine propaganda piece, The Greater Good and had featured antivaccine talks in previous years. Ironically, at one point, one of the antivaccine bloggers at the crank blog Age of Autism blamed “progressivism” for failing to “get” autism. (Translation: From his perspective, his fellow progressives don’t accept the vaccine-autism link the way he would like, while conservatives apparently did.)

It is no coincidence that the most powerful antivaccine legislator in the 1990s and into the first decade of the 2000s was Representative Dan Burton (R-Indiana), who for many years was the foremost promoter of the pseudoscience claiming that vaccines cause autism. His activities in support of antivaccine views as chair of the House Committee on Oversight and Government Reform were legion while he was in Congress and Republicans controlled the House. For instance, Burton held showboating, Kangaroo court-style hearings about thimerosal and autism back in 2002 that now remind me, more than anything else, of the hearings about Stanislaw Burzynski by Rep. Joe Barton (R-Texas) back in the 1990s. Burton also was known for harassing FDA officials over thimerosal in vaccines, and at one point tried to insert himself into the Autism Omnibus hearings by writing a letter to the Special Masters asking them to consider crappy scientific papers (e.g., a this paper, which was pure crap) allegedly supporting a link between thimerosal-containing vaccines and autism.


Tuesday, September 14, 2021

Antivax Movement Starts to Infect Canada


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.  

 Dr. Peter Hotez at Global News:

Well, it has finally happened. News this week of widespread and disruptive anti-vaccine protests at Canadian medical centres means that America’s destructive, self-defeating and totally nonsensical anti-vaccine movement has begun crossing the border.


As a pediatrician, vaccine-scientist and parent of an adult daughter with autism and intellectual disabilities, I have had a front-row seat to America’s anti-vaccine movement for the last two decades. I’m also a lead target, and sometimes known as the ‘OG Villain’ for writing the book, Vaccines Did Not Cause Rachel’s Autism a few years back.
...
Today, the anti-vaccine movement has three major drivers. One of them is anti-science aggression from the far-right, as highlighted above. However, there are also at least a dozen non-governmental groups identified by the Centre for Countering Digital Hate as responsible for approximately two-thirds of the anti-vaccine disinformation in America.

The third is Russian propaganda, which promotes anti-vaccine disinformation as a means to destabilize the U.S. and other democratic countries, possibly including Canada.


Monday, September 13, 2021

Wellness World and the Antivax Movement

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.  


The wellness world’s entanglement with vaccine hesitancy dates back to well before the covid pandemic. For years, the anti-vaccine movement grew on various Facebook groups, freely spreading discredited theories that shots cause autism and other ailments, until the tech giant began limiting those group’s reach and ability to pay for promotional ads in 2019. Of course, not all yoga instructors and holistic healers are anti-vaxxers, and many actively promote vaccines and support medical science.

But tight links have developed between groups focused on anti-vaccine messages and those dedicated to parenting, alternative health practices and concerns over genetically modified food, according to a study published online in February from George Washington University’s Institute for Data, Democracy and Politics. The study identified a large cluster of Facebook groups that focused on posting and spreading covid-19 misinformation, including anti-vaccine messages. It then showed that links from those groups were often posted in wellness groups, and vice versa.

When the coronavirus vaccines started becoming available and millions of people turned to the Internet to find out more information, many found answers in the wellness groups and networks of influencers that were already a daily part of their social media diet.

Sunday, September 12, 2021

National Training for Police and Mental Health Crisis Support

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

Senator Bob Casey (D-PA) and Senator Jerry Moran (R-KA) reintroduced the bipartisan Law Enforcement Education and Accountability for People with Disabilities (LEAD) Initiative. This legislation will help bring about racial justice and address the high incidence rate of police violence involving people with autism and other disabilities. The LEAD Initiative consists of two bills – the Safe Interactions Act (SIA) and the Human-services Emergency Logistic Program (HELP) Act. These two bills are also introduced in the House. Representative Anna Eshoo (D-CA) introduced the HELP Act and Representatives Susan Wild (D-PA) and Brian Fitzpatrick (R-PA) introduced the SIA Act.

From Senator Casey:

The HELP Act is a proposal to connect people in communities with the human services they need while at the same time reducing the call and response burden on local and state law enforcement agencies. The Act would: 

  • Divert non-criminal, non-fire and non-medical emergency calls from 9-1-1 systems to state and regional 2-1-1 systems. 
  • Provide each state with funds to build out its 2-1-1 referral system to link callers to both emergency and long-term human services in order to address their needs. Special emphasis would be placed on responses for mental health emergencies, homelessness needs and other non-criminal emergencies.  In addition, the 2-1-1 system would be a robust resource and referral system capable of linking individuals and families to other human services needs such as food assistance and child care. 
  •  Create an oversight system for the 2-1-1 networks comprised of community members who represent older adults, people with disabilities, ethnic and racial community members and members of other communities. Each system would be evaluated every year and recommendations to improve services would be made public.
The Safe Interactions Act provides grants to enable nonprofit disability organizations to form partnerships with a law enforcement agency or agencies, to develop training programs that support the safe interactions between law enforcement officers and people with diverse disabilities by increasing the understanding of different disability types among new and veteran law enforcement officers. Preference will be given to applicants with partnerships that will train law enforcement officers in rural communities and include racial and ethnic minorities and black, indigenous, people of color in the trainings.The Act would require: 
  • Partnerships between a nonprofit disability organization and law enforcement agencies. • Inclusion of self-advocates in the development and implementation of trainings, including a diverse group of disability types such as intellectual and developmental disabilities, mental health disabilities, and sensory and/or physical disabilities.
  • A minimum of eight hours of training for new law enforcement officers, including four hours of interactive sessions led by trainers with disabilities, and at least four hours of training every year for existing law enforcement officers.
  • The establishment of an advisory council, chaired by a person with a disability, to oversee the training program development and implementation

Saturday, September 11, 2021

The Keeping All Students Safe Act

In The Politics of Autismdiscuss the use of restraint and seclusion.  Many posts have mentioned these techniques, both in schools and facilities for people with disabilities.

From the Autism Society:

The Keeping All Students Safe Act (KASSA) has been introduced in both the House and Senate by Representatives Bobby Scott (D-VA), Don Beyer (D-VA), and Donald McEachin (D-VA), and Senators Chris Murphy (D-CT) and Patty Murray (D-WA). This bill would make it illegal for any school that receives federal funds to seclude a child or use dangerous restraint practices that restrict breathing, such as prone or supine restraint. KASSA would also prohibit schools from physically restraining children, except when imminent danger of serious injury to students or staff is likely. The bill would also ensure training is provided to all school personnel that is based on evidence-based proactive strategies. This harmful restraint and seclusion practices disproportionately affect students with autism and other disabilities, and/or students of color. According to the 2018 Civil Rights Data Collection, of the students restrained or secluded, 78 percent were students with disabilities. Although Black students comprise 15 percent of the student population, they represent 22 percent of students subjected to seclusion and 34 percent of students subjected to mechanical restraint.

Students with disabilities deserve the opportunity to pursue their education free from the fear of trauma and abuse. Please use this action alert to encourage your members of Congress to pass this important piece of legislation.

More here. 

Thursday, September 9, 2021

An Encounter in Glynn County, Georgia

In The Politics of Autism, I discuss interactions between police and autistic people.  Police officers and other first responders need training to respond appropriately.  When they do not, things get out of hand.   Unfortunately, there is practically no research on best practices for training programs.

 At WJXT-TV, Anne Maxwell reports:

Body camera footage released Tuesday shows Glynn County police tasing a man with autism who is nonverbal at least six times.

Police said officers were called around 8:30 Saturday night about a man walking in traffic. Callers said the man was carrying a weapon, screaming and hitting himself in the head near the Dollar General store on Stafford Avenue in Brunswick.

A spokesperson said the responding deputies didn’t know the man had autism when they arrived, but even after the man had dropped the metal object in his hand and people in the area shouted about his mental health condition, deputies continued to use force when he ignored calls to get on the ground.

CAUTION: The full video can be viewed here, but some might find the contents disturbing

Wednesday, September 8, 2021

If you want to develop an effective autism training, ask autistic students to help you

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

Kristen Gillespie-Lynch and colleagues have an article at Autism titled "If you want to develop an effective autism training, ask autistic students to help you." The abstract:

Autistic university students are often left out because people do not understand autism. We wanted to help people understand autism. Most autism trainings are not made by autistic people. Autistic people know what it is like to be autistic. So autistic people may be the best teachers when it comes to teaching about autism. Autistic students and non-autistic professors made an autism training. The students made videos for the training. They also helped make questions to see what people learned from the trainings. Professors who are not autistic made a training on their own. Students in New York City tried out the trainings. After they answered questions, they did either the training the autistic students helped make or the training made by only professors. Then, they answered questions again. We learned from the students how to make our trainings better. Then, students from two universities in the United States and one university in Lebanon did our trainings and questions. Both trainings made hidden feelings about autism better. The training autistic students helped make taught students more than the training professors made on their own. The autistic-led training also helped students accept autism more. These studies show that autistic students can make autism research and trainings better. At the end of this article, autistic students share their ideas for how to make autism trainings even better in the future.

From the article:

Autistic co-authors indicated that their experiences contributing to the development and/or evaluation of the participatory training gave them self-confidence and helped them advocate for themselves and others, particularly people who are diverse in multiple ways, such as autistic women and non-speaking people. They enjoyed learning how participants initially thought about autism and how their viewpoints expanded with training to appreciate the diversity of the autism constellation. An autistic collaborator wrote,

 Developing this participatory training for my capstone was an experience that felt quite personal to me, as I felt as though I was helping a new generation of autistic students be okay with being themselves. Whatever I can do to improve the conditions for people on the spectrum in the future, I will do, and this was an important part of that.

Monday, September 6, 2021

Irish Woman Nails Autism-Cure Scammer

In The Politics of Autism, I discuss autism quackery.  One particularly dangerous "cure" involves bleach.  Lately, the quacks hawking a bleach solution have rebranded it as a cure for coronavirus.

John Hand at Irish Mirror:

A man has been arrested in the US after an Irish woman alerted police that he was making and selling a bogus Covid-19 treatment.

Activist Fiona O’Leary informed cops in Las Vegas, Nevada, who lifted Elias Daniel Beltran Suarez over his scam on Monday.

Officials said his product posed “significant risks to patient health” after uncovering his makeshift chemical lab to create his bleaching agent treatment.

He claimed it could cure autism, cancer and Covid-19.

He is now facing the charge of acting as a medical practitioner without a licence.

Glenn Puit at The Las Vegas Review-Journal:

Police said the Las Vegas investigation started when an online sleuth who described herself as “a campaigner against dangerous pseudoscience” came across Suarez on the online portal Telegram under a group user name Comusav.com. The woman identified herself to the Las Vegas Review-Journal on Tuesday as Fiona O’Leary of Cork, Ireland.

In a phone interview, O’Leary said she has three children who have autism, and she learned years ago that chlorine dioxide was being peddled by fake doctors and pseudo-scientists to desperate parents of autistic children. She referred to the sellers of chlorine dioxide as “bleachers” who engage in “dangerous quackery.”

“Someone reached out to me telling me they were giving bleach to autistic children,” O’Leary said. “I thought they were mad.”

O’Leary said chlorine dioxide also is sold as a cure for cancer. She said she works tirelessly to out those who sell chlorine dioxide and report them to law enforcement. She said the treatment is especially popular in Latin America.

Sunday, September 5, 2021

Controversy Over a DNA Study

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.

Liam O'Dell at The Independent:
Autistic advocates have expressed concerns over a University of Cambridge study, over fears that the research into “genetic and environmental factors that contribute to the wellbeing of autistic individuals and their families” amounts to “eugenics”.

Branded “the largest study of autism in the UK”, Spectrum 10K – which also involves researchers from the Wellcome Sanger Institute and the University of California Los Angeles (UCLA) – looks to collect questionnaire responses and DNA samples from 10,000 autistic people.

Professor Simon Baron-Cohen, director of Cambridge’s Autism Research Centre and project leader, said there is an “urgent need” to “better understand” the needs of autistic people.

...

However, while the team behind Spectrum 10K repeatedly insist that they are “not searching for a cure” for the condition and that they are “ethically opposed to any form of eugenics”, concerns have been raised over the security of genetic information and the views of those involved.

Speaking in April 2019, Baron-Cohen told Spectrum News that “there’s no way we can ever say that a future political leader or a scientist won’t use the research for eugenics”.

The "eugenics" fear is that if DNA testing shows that a couple with a high probability of having an autistic child, they will decide not to have children at all.  And more specifically, there is concern that it could lead to selective abortion