Early Internvention and Unintended Consequences

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

Lei Lei Wu at Medpage Today:

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.

James Cusack at The Guardian:

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.

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.

Adam Gabbatt at The Guardian:

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.

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.”

 

This is a full view of the board behind Michael Flynn and Mike Lindell. (2/2) pic.twitter.com/SYw5wqSE8e

— PatriotTakes 🇺🇸 (@patriottakes) July 6, 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

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.

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.

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.