Helping Autistic People Get Vaccines

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. 

Kathleen Toner at CNN:

Dr. Wendy Ross, a pediatrician, was honored as a CNN Hero in 2014 for her work advocating for people with intellectual or developmental disabilities. Now, as director of Jefferson Health's Center for Autism and Neurodiversity in Philadelphia, she's making it easier for them to get vaccinated.

"A lot of them get easily overwhelmed in crowds. They have a lot of sensory issues, they tend to be very anxious in new experiences," Ross said. "We reduce that stress by having a very low-stimulus environment ... We just sort of slow down the pace and make it more relaxed."

For those who are neurodiverse, Ross' sensory-friendly clinic is a welcome refuge. There's more space between appointments, which means less waiting in line, and the office has special seating, fidgets and even sunglasses available to help people stay calm. Trained vaccinators have strategies to help the process go smoothly.

But these accommodations aren't just about comfort. Ross conducted a study that showed that people with intellectual disabilities face a greater risk of Covid-19.

"What we discovered was that having an intellectual disability was the number one risk factor for getting Covid and the second risk factor -- only below age -- for dying from Covid," she said. "This is an invisible population and our goal is to make them visible and cared for adequately."

Ross has resources available on her office's website to help neurodiverse individuals prepare for vaccinations and other Covid-related issues. She also asked a focus group of young adults with intellectual disabilities what people vaccinating them should know, and she later turned this into a video PSA with the Special Olympics.

Dawn Powell had concerns about getting her 16-year-old son Anthony vaccinated, because in addition to having autism he had a lot of anxiety about getting a shot. Ross and her staff had to try a few times before they were successful, but Powell was grateful for their efforts.
"I didn't think it was going to happen ... but they did it," she said. "As a mom, it means everything ... When we go to regular clinics, they kind of give up on the first try."

Ross says that a number of people have told her they would not have been able to get their children vaccinated anywhere else.

"Getting the vaccine to this population absolutely is saving lives," she said. "I just feel that everyone matters and has value and that everyone should be included."

Autistic Soldiers in Israel

In The Politics of Autism, I note that we need more study of how autistic people fare in other countries.

Lilach Shoval at Israel Hayom:

For the first time in its history, the Israeli Defence Forces opened its doors Wednesday for recruits on the autistic spectrum.

Fifty-three high-functioning Israelis joined the military following months of preparations that included working with experts, redesigning shoes and setting up tailor-made mentoring systems.

Having only been able to serve in the military's volunteer programs thus far, they no longer have to limit their service applications.

Besides providing these young people with opportunities that were denied to them in the past, the IDF also believes their skills would be an asset to the military in terms of cyber protection, quality assurance, system development, and other disciplines.

Seventy more autistic Israelis are expected to join the IDF in December, another 350 next year, and hopefully, another 500 annually from then on.

Unfortunately, the US Navy recently took an ROTC scholarship away from an applicant because of his autism. 

Mercola

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.

At NYT, Sheera Frankel reports on Joseph Mercola:

An internet-savvy entrepreneur who employs dozens, Dr. Mercola has published over 600 articles on Facebook that cast doubt on Covid-19 vaccines since the pandemic began, reaching a far larger audience than other vaccine skeptics, an analysis by The New York Times found. His claims have been widely echoed on Twitter, Instagram and YouTube.

The activity has earned Dr. Mercola, a natural health proponent with an Everyman demeanor, the dubious distinction of the top spot in the “Disinformation Dozen,” a list of 12 people responsible for sharing 65 percent of all anti-vaccine messaging on social media, said the nonprofit Center for Countering Digital Hate. Others on the list include Robert F. Kennedy Jr., a longtime anti-vaccine activist, and Erin Elizabeth, the founder of the website Health Nut News, who is also Dr. Mercola’s girlfriend.

“Mercola is the pioneer of the anti-vaccine movement,” said Kolina Koltai, a researcher at the University of Washington who studies online conspiracy theories. “He’s a master of capitalizing on periods of uncertainty, like the pandemic, to grow his movement.”

Some high-profile media figures have promoted skepticism of the vaccines, notably Tucker Carlson and Laura Ingraham of Fox News, though other Fox personalities have urged viewers to get the shots. Now, Dr. Mercola and others in the “Disinformation Dozen” are in the spotlight as vaccinations in the United States slow, just as the highly infectious Delta variant has fueled a resurgence in coronavirus cases. More than 97 percent of people hospitalized for Covid-19 are unvaccinated, according to the Centers for Disease Control and Prevention.

Dr.Stephen Barrett at Quackwatch:

For many years, Dr. Mercola and other staff members saw patients at his clinic, which was called the Optimal Wellness Center. In 1999, Mercola announced that about one third of his new patients were autistic and that he had treated about 60 such children with secretin, a hormone he said “appeared to be a major breakthrough.” [2] After it was well settled that secretin is ineffective against autism [3], Mercola’s Web site still said it would work if a child complied with his recommended diet strategies [4].Mercola JM. Milk linked to autism, schizophrenia. Optimal Wellness Center Web site, March 21, 1999.

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Biden on ADA at 31

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

Yesterday, President Biden spoke on the 31st anniversary of the Americans with Disabilities Act:

I was enormously proud to be a co-sponsor to the ADA as Pat Leahy was, as well, if I’m not mistaken, as a member of the United States Senate.

 And I’m proud to be here today, as President, alongside so many fearless champions who represent the ongoing legacy of this law, from the foundations to its future.
 
Thirty-one years ago, after its passage, many Americans have never lived in a world without the ADA.  Generations have grown up not knowing a time before it existed. 
 
But many of us can still recall an America where a person with a disability was denied service in restaurants and grocery stores, and could be; where a person using a wheelchair couldn’t ride on a train or take a bus to work or to school; where an employer could refuse to hire you because of a disability.  An America that wasn’t built for all Americans.
 
Then we passed the ADA and made a commitment to build a nation for all of us.  All of us.  And we moved America closer to fulfilling that promise of liberty and justice, and maybe most importantly, dignity and equality for all.
 
You know, and perhaps most importantly, we did it together.  This was a Democratic bill signed by a Republican president.  A product of passion and compassion, not partisanship.  Progress that wasn’t political, but personal, to millions of families.
 
I’ll never forget the moment the ADA passed.  And you may remember it, Pat.  Standing on the floor of the United States Senate, and Tom Harkin saw the recognition — he rose.  And the first time — first time in the history that I’m aware of — in the United States Senate, he stood up and he signed in a speech to his brother.  Tom wasn’t just sending a message to millions of deaf and hard-of-hearing folks; he was speaking to his brother, Frank.  It was personal to him.
 
It was personal to Bob Dole, as well, who lost the use of his right arm in a heroic effort during World War Two; who laid out in a hospital for almost three years — his injury listed, and they also lasted an entire lifetime.
 
But like so many Americans, he turned his disability, his apparent limitation, into greater purpose and will.  He made — he made the rights of disabled Americans a lifelong cause. 
 
And for more than 60 million Americans living with disabilities, the ADA is so much more than a law; it’s a source of opportunity, participation, independent living, and respect and dignity, the bulwark against discrimination, and a path to independence.
 
And for our nation, the ADA is more than a law as well; it’s testament to our character as a people, our character as Americans.  It’s a triumph of American values.  
 
But, of course, this law didn’t bring an end to the work we need to do.  Today, too many Americans still face barriers to freedom and equality.  But thanks to this movement that spans all races, beliefs, backgrounds, and generations, we’re once again making progress together.  

Unvaxxed Autistic Man Dies 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.

Half of COVID vaccine rejectors think that vaccines in general cause autism. 

María Luisa Paúl at WP:

These days, Christy Carpenter finds strength in her family and faith. But on some days, one question keeps ringing in her head: “Why?”

After weeks of battling through oxygen treatments, her 28-year-old son died in the hospital two months after being diagnosed with covid-19.

Now in Carpenter’s Alabama home, the room belonging to Curt, her “beautiful baby boy” and firstborn, remains empty — a painful reminder of a life that could have been saved if the family had decided to get vaccinated, she said.

“It took watching my son die and me suffering the effects of covid for us to realize we need the vaccine,” the mother said. “We did not get vaccinated when we had the opportunity and regret that so much now.”
...

Curt Carpenter was a young and otherwise healthy man. While at home, his mother said, he would spoil her with the “best hugs” and a daily dosage of kindness. Curt was autistic, but Christy Carpenter said he “lived life to the fullest” and had a passion for all things Pokémon, trains, video games and frogs.

...

 His last uttered phrase is still etched in Christy Carpenter’s mind: “This is not a hoax, this is real,” Curt said, according to his mother.

His mother said Curt Carpenter at first believed that the coronavirus was a hoax. The whole family was hesitant to get vaccinated when the shots became available.

“It took years to create other vaccines, and the coronavirus vaccine was created very quickly,” Christy Carpenter said. “That made us very nervous.”

Medicaid and Autistic Adults

The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for people with intellectual and developmental disabilities.

At Health Services Research,  Lindsay Lawer Shea, Kaitlin H. Koffer Miller, Kate Verstreate, Sha Tao, and David Mandell have an article titled "States' use of Medicaid to Needs of Autistic Individuals."

Abstract

Objective

To assess the use of Medicaid programs, including waivers, to address the needs of aging autistic individuals.

Data sources

We gathered data on Medicaid programs in place between 2004 and 2015 for 50 states and the District of Columbia from the Centers for Medicare and Medicaid Services website, by contacting state Medicaid administrators and advocacy groups, and by reviewing the Medicaid Analytic eXtract Waiver Crosswalk.

Study design

This retrospective analysis classified each Medicaid program and documented state changes over time in eligibility criteria: those serving autism spectrum disorder only, autism spectrum disorder or intellectual disability, and intellectual disability only.

Data collection/extraction methods

We captured age and diagnosis eligibility criteria for Medicaid programs serving any of the three target groups.

Principal findings

A total of 269 Medicaid programs met our criteria and most programs (51%) were 1915(c) waivers. The number of autism-specific 1915(c) waivers grew more than fivefold during the study period, outpacing increases in waivers serving individuals with intellectual disability.

Conclusions

States varied in their use of Medicaid to address the needs of the aging autism population. Further study of characteristics of states that changed their Medicaid programs, and of the health care use and outcomes associated with these changes, are needed to identify opportunities to replicate effective approaches to meeting the needs of this population.

What is already known on this topic

The number of individuals diagnosed with autism spectrum disorder (ASD) is increasing. Most will need services and supports throughout their lives.

Medicaid 1915(c) waivers are a policy mechanism that states frequently use to provide health care insurance to specific populations for targeted services.

What this study adds

States use a variety of Medicaid programs to enroll and serve individuals with ASD; the most common mechanism being the 1915(c) waiver authority.

Twenty-six states changed their 1915(c) waiver programs to increase options for individuals with ASD.

Identifying state policy changes is the first step in comparing outcomes associated with varying approaches.

Welcome Vaccine Reversals in Tennessee

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. 

Half of COVID vaccine rejectors think that vaccines in general cause autism.  Even when they take the vaccine, there could be a problem.

Brett Kelman at the Nashville Tennessean:

The Tennessee state government will resume all forms of vaccine outreach, with the narrow exception of social media posts aimed specifically at children, after halting many forms of advocacy this month in response to conservative pressure, the state's top health official said Friday.

Tennessee also faces a new “surge” of coronavirus that shows no signs of slowing, and deaths from the virus are expected to spike in coming weeks, the health official warned.

Health Commissioner Dr. Lisa Piercey said the Tennessee Department of Health will restart outreach efforts recommending vaccines for children and once again hold events on school property offering the COVID-19 vaccine, including some next week. Department staff are no longer instructed to strip the agency logo from public-facing vaccine information, she said.

“Nothing has been stopped permanently,” Piercey said during a press briefing. “We put a pause on many things, and then we have resumed all of those."

Piercey said her agency will also, in rare circumstances, provide the COVID-19 vaccine to minors without the permission of their parents. This statement is a contradiction to an announcement made this week by conservative lawmakers, who said Piercey agreed in a private meeting to stop this practice.

The Tennessee Department of Health drew nationwide attention this month after exclusive reporting by The Tennessean revealed the agency had dramatically scaled back efforts to promote the coronavirus vaccine to minors. The changes came after conservative state lawmakers lambasted the agency for gently recommending the vaccine to minors and proposed dissolving the entire agency to make the outreach stop.

 Martin Pengelly at The Guardian:

 A conservative radio host in Tennessee who urged listeners not to get vaccinated against Covid-19 has changed track and called on listeners to get the shot, after contracting the virus and ending up in hospital in “very serious condition”.

In a statement posted to social media, Phil Valentine’s family detailed his condition and said: “Please continue to pray for his recovery and PLEASE GO GET VACCINATED!”

The family also said the WTN host had “never been an ‘anti-vaxer’”, but “regrets not being more vehemently ‘pro-vaccine’ and looks forward to being able to more vigorously advocate that position as soon as he is back on the air, which we all hope will be soon”.

Valentine, 61, did, however, play down the need for vaccines and perform a song called Vaxman, to the tune of Taxman, George Harrison’s Beatles number against government taxation.

“Let me tell you how it will be,” he sang, “and I don’t care if you agree, ‘Cause I’m the Vaxman, yeah I’m the Vaxman. If you don’t like me coming round, be thankful I don’t hold you down.”