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Friday, July 17, 2020

Finding the Autistic Community

 In The Politics of Autism, I examine the role of social media in the development of the issue.  Social media can spread vaccine disinformation, but they can also provide autistic people and their families with a way to connect with one another and to press for government action.

Joseph Shapiro at NYT:
Also true to their age group, members of the A.D.A. generation use social media to meet and organize. Ari Ne’eman was 18 when he started the Autistic Self Advocacy Network online in 2006 to challenge the prevailing narrative about autism, one that was driven by parents’ groups and researchers. It largely saw autism as a tragedy and the answer as a cure.
For Mr. Ne’eman and other autistics, that ran counter to the proof of their lives, which were rich and fueled by the ambitions promised by the A.D.A. He and others wrote and organized to shatter the old images of autism. A recent academic study of newspaper content credited their work for a dramatic shift to positive depictions of autistic life.
Mr. Ne’eman, now a visiting scholar at the Lurie Institute for Disability Policy at Brandeis University, said, “Finding the autistic community online was important to me because it sent the message that you don’t actually have to take, as written on stone tablets, everything that professionals say about you as true.”
Thus social media perform the same function that Tocqueville ascribed to newspapers: "Then a newspaper gives publicity to the feeling or idea that had occurred to them all simultaneously but separately. They all at once aim toward that light, and these wandering spirits, long seeking each other in the dark, at last meet and unite. The newspaper brought them together and continues to be necessary to hold them together." (Democracy in America, Lawrence/Mayer ed., p. 518)

Thursday, July 16, 2020

How to Talk to Antivaxxers and Other Conspiracy Theorists

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. The antivaxxers are joining up with protests against the coronavirus shutdown. Belief in conspiracy is a common denominator.

Tanya Basu at MIT Technology Review:
  1. Always, always speak respectfully. Every single person I spoke to said that without respect, compassion, and empathy, no one will open their mind or heart to you. No one will listen.
  2. Go private. Donovan says that when she sees someone post something problematic on social media, she doesn’t pile on in the comments section. “I might send someone a text or reach out in a personalized way through DMs rather than post on their wall,” she says. That prevents discussion from getting embarrassing for the poster, and it implies a genuine compassion and interest in conversation rather than a desire for public shaming.
  3. Test the waters first. That way you save yourself time and energy. “You can ask what it would take to change their mind, and if they say they will never change their mind, then you should take them at their word and not bother engaging,” r/ChangeMyView moderator ihatedogs2 told me. In fact, the subreddit has a list of behaviors that indicate if a person is not genuinely open to discussion.
  4. Agree. Remember the kernel of truth? Conspiracy theories often feature elements that everyone can agree on. Establish those to help build trust and an “I’m on your side” vibe to prep for the stickier stuff to come.
  5. Try the “truth sandwich.” Use the fact-fallacy-fact approach, a method first proposed by linguist George Lakoff. “State what’s true, debunk the conspiracy theory, and state what’s true again,” Donovan says. For example, if you’re talking to someone who believes the 5G conspiracy theory, you could structure your argument as “Coronavirus is an airborne virus, which means it is passed by sneezing, coughing, or particles. Because viruses are not transmitted via radio waves, coronavirus, which is an airborne virus, can’t be carried by 5G.” It’s repetitive, but it reinforces facts and points out where the conspiracy theory doesn’t work.
  6. Or use the Socratic method. In other words, use questions to help others probe their own argument and see if it stands up. Stuart Johnson, a mod on r/ChangeMyView, says that this is by far the most effective approach he’s found, as it challenges people to come up with sources and defend their position themselves. “The best way to change someone’s view is to make them feel like they’ve uncovered it themselves,” he says. That means engaging in back-and-forth questions and answers until you hit a dead end, gently pointing out inconsistencies. Studies show that people often think they know more about a policy then they let on, and the Socratic method can reveal those inconsistencies. Research shows this tactic can prevent one party from feeling attacked.
  7. Be very careful with loved ones. Every single person I spoke to hesitated when asked how to confront a loved one, like a parent or sibling, who believes in conspiracy theories. Many said they back off if the relationship is extremely close. “You have to perform a calculation on whether it’s worth it to engage,” ihatedogs2 told me. “How deeply do they believe it? How harmful is their belief?” It can be tough, but biting your tongue and picking your battles can help your mental health too. As another r/ChangeMyView user, Canada Constitution, put it: “A harmonious Thanksgiving is preferable to fights over social media.”
  8. Realize that some people don’t want to change, no matter the facts. In highly politicized areas, researchers have found, some people rationalize their belief system—even if reality counters it—simply because it’s difficult to be in the wrong. Canada Constitution once ran into this in trying to talk to someone who thought psychiatric medication was a conspiracy: “No matter how many peer-reviewed studies I pulled up, they would not budge. Rather than get frustrated, I took the opportunity to ask them further questions to understand their beliefs.” Taking this approach not only helps you refine your argument but also is more compassionate.
  9. If it gets bad, stop. One r/ChangeMyView moderator suggested “IRL calming down”: shutting off your phone or computer and going for a walk. Another put it even more simply: “If I am not enjoying the discussion and getting angry, then I simply stop.”
  10. Every little bit helps. One conversation will probably not change a person’s mind, and that’s okay. “People aren’t going to have seismic shifts in beliefs all at once,” an r/ChangeMyView mod, themaskedserpent, told me. “Sometimes you can shift someone’s perspective a little, like water eroding a rock. You won’t debunk a conspiracy theory but lay the path for someone in the future to do so.”

Wednesday, July 15, 2020

The Moloch of Mar-a-Lago

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.

Coronavirus presents unprecedented challenges to public policy and the electoral process. Trump has a bad record on health care issues, especially now.

Lloyd Green at The Guardian:
Like Moloch, the ancient pagan god, Donald Trump is ever ready to demand that Americans sacrifice themselves for his greater good. He commanded that states open up early, and then this happened: Arizona, Florida, and Texas are looking like Wuhan redux. Come this fall, the president also expects that parents will put their children in harm’s way for the sake of his re-election bid. In response, teachers have taken to drafting their wills, just in case.

But other moments, Trump acts like a man with a political death wish of his own. His justice department is urging the US supreme court to strike down the Affordable Care Act as unconstitutional. The fact that 5.4 million people have already lost their health insurance amid the pandemic does not even register as a blip on the administration’s radar.

Instead, last month the government filed its brief with the high court in its endless endeavor to erase Barack Obama’s legacy. Just think of Wile E Coyote chasing Road Runner and you get the picture.
...
The amicus briefs filed in opposition to the government’s position are bad news for the president. Portions of Trump’s base are actively aligned against him. In simplest terms, older voters and Catholic Americans don’t necessarily like what they are seeing.
AARP and the Catholic Health Association have come out swinging to defend Obamacare. AARP speaks for America’s seniors, and older voters are walking away from Trump.
...
In Too Much and Never Enough, Mary Trump, the president’s niece, writes that if the president “can in any way profit from your death, he’ll facilitate it, and then ignore the fact that you died”. As her book dropped on Tuesday, the Grim Reaper’s scythe is again unsheathed. Covid is going full-bore. The prospects of Trump as a one-term president grow.

Disability, Race, and the Police


Autistic people may have poor eye contact or engage in repetitive behaviors, which may strike police officers as suspicious. They also might be slow to react to police commands, which can cause a routine stop to spin out of control. In Greenville, South Carolina, one news account tells of an autistic man named Tario Anderson: “Officers said they saw Anderson walking on the sidewalk and tried him to question him. They said when they put a spotlight on Anderson, he put his hands in his pockets, started walking the other way and eventually started running from them. He was shocked with a Taser and arrested because he didn’t follow the officers’ commands.”[i] Anderson is also African American, which adds another dimension to the story. In the wake of incidents in which African Americans had died at the hands of white police officers, one father wrote of his autistic son: “What if my son pulling back from a cop is seen as an act of aggression? What if a simple repetitive motion is mistaken for an attempt at physical confrontation? If a cop is yelling at my son and he doesn’t respond because he doesn’t understand, what’s stopping the cop from murdering my boy in cold blood?”[ii]

I know that I am not alone when it comes to worrying that a loved one with autism, or a developmental disability, or mental health challenges will one day encounter the wrong cop — one who won't recognize that special needs people often require patience. I recently spoke about my worries concerning my son on CNN and the response from viewers who empathized with my fears was overwhelming. One email was particularly moving.
"I saw you today on CNN. While I was trying to process the horrible news that just doesn't seem to stop, I heard you mention your concerns for your son. When you began to speak about his autism and how much you worry about the constant possibility of him being shot for being a young Black man and an autistic young man, my tears spilled over. My son is 30 and autistic. My son is white but he is your son. Your son is Black but he is my son. Today (shown on CNN crawl) in Jerusalem, the Israeli police shot and killed a Palestinian man who they later learned had Autism. I am Jewish but that man is my son. That man is OUR son.
The intersection of so many kinds of lives binds us together. We must find a way for all of our sons and daughters to be safe. To be loved and safe.
I pray for reconciliation, recognition, and rebuilding of the shredded social fabric of the United States. Thank you for sharing your story.” - Faye
I was truly touched by Faye’s words, and I do believe America would be a much better place if more people could see the world through eyes as honest and loving as hers. But every time I turn on the news and see the story of an Elijah McClain, an innocent, unarmed Black man who was murdered by police, I am reminded that my son is not Faye’s son. My son is a Black man, and to racist cops that makes him only one thing — a suspect.
Chelsey Cox at USA Today:
About one-third of people killed by police have a mental or physical disability, McDeid said. A Washington Post tally found nearly a quarter of those shot and killed by police had a mental illness.
Six years ago, Dontre Hamilton, who had schizophrenia, was shot 14 times by a Milwaukee police officer who had not received any specialized training on interacting with people with mental illness. After George Floyd's death, people of color with disabilities were inspired to march for Hamilton and others, The Milwaukee Journal Sentinel reported.
...
A study conducted in 2019 by the nonprofit Stop Street Harassment found that people with disabilities are more likely to experience sexual harassment and assault. People with disabilities were the victims of sexual or aggravated assault, robbery and rape at twice the rate of people without disabilities, according to a summary released in 2017 by the Bureau of Justice Statistics.
One in five surveyed said their disability made them a target.
“Clearly people can tell by interacting with me or observing me that I'm not ... normal by ableist definitions of normal, even if they wouldn't know the specific language to use. But many people would think, ‘that person is a target,’ ” said [Lydia X. Z.] Brown, who has autism and survived a near-sexual assault.
In a Washington survey of people with disabilities who said they experienced harassment, only 12% said they filed a police report. Distrust of police was one reason, according to a report by the D.C. Office of Human Rights. The office found that people with disabilities are publicly targeted for harassment more often than any other marginalized group aside from immigrants.

Tuesday, July 14, 2020

The Problem of Guardianship

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

Tyler Cowen at Bloomberg:
[T]he error rate for decisions about guardianship, in contrast with the medical error rate, is unknown. There is also a dearth of information about the overall numbers of autistic Americans under guardianship. In American history, lack of transparency has too often been correlated with unfairness and prejudice.
One study considered 8,713 diagnosed autistic adults in the U.S. Of that cohort, 5,025 were legally dependent, with a court-appointed custodian of some kind. Regardless of whether this is a representative sample, guardianship is by no means a rare practice. Of that group, 43.4% were listed as intellectually disabled, and about two-thirds had at least one psychiatric disorder over the course of their lifetimes (with imperfect scrutiny, the general U.S. rate registers at one half).
These numbers hardly settle the question. But they do raise the possibility that many of these adults may never have needed guardianship status in the first place.
Such a lack of transparency is shocking. Once people have lost their rights, it is not particularly easy to win them back, if only because they do not have control over their own life. How do you prove that you are capable of making your own decisions?

Monday, July 13, 2020

COVID Risk in Residential Group Homes

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.

Scott D. Landes and colleagues have an article in Disability and Health Journal titled:"COVID-19 Outcomes among People with Intellectual and Developmental Disability Living in Residential Group Homes in New York State."  The abstract:

Background
People with intellectual and developmental disabilities (IDD) may be at higher risk of severe outcomes from COVID-19.
Objective
To describe COVID-19 outcomes among people with IDD living in residential groups homes in the state of New York and the general population of New York State.
Methods
Data for people with IDD are from a coalition of organizations providing over half of the residential services for the state of New York, and from the New York State Department of Health. Analysis describes COVID-19 case rates, case-fatality, and mortality among people with IDD living in residential group homes and New York State through May 28, 2020.
Results
People with IDD living in residential group homes were at greater risk of severe COVID-19 outcomes: case rates – 7,841 per 100,000 for people with IDD compared to 1,910 for New York State; case-fatality – 15.0% for people with IDD compared to 7.9% for New York State; and mortality rate – 1,175 per 100,000 for people with IDD compared to 151 per 100,000 for New York State. Differences in cases and mortality rate were confirmed across regions of the state, but case-fatality rate was only higher for people with IDD in and around the New York City region.
Conclusions
COVID-19 appears to present a greater risk to people with IDD, especially those living in congregate settings. A full understanding of the severity of this risk will not be possible until US states begin publicly sharing all relevant data they have on COVID-19 outcomes among this population.

Sunday, July 12, 2020

A COVID Cough?

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.

Rep. Glenn Grothman (R-WI) apparently believes in the discredited notion.
In 2017, Jeff Spitzer-Resnick blogged about a visit to Grothman's office::
Sure enough, almost immediately, Rep. Grothman walked into his office where we were already sitting down with his legislative assistant, and recognized me and said:

I have to ask you a question. Do you believe that vaccines cause autism?
While I could not have predicted exactly what outrageous question Rep. Grothman would ask me, I had anticipated that he would ask an outrageous question. I could have demurred and said that this was not what we had come to talk to him about as it was not one of our issues, but my past experience with Rep. Grothman was that he would not give up until he got an answer to his question. So, I replied by saying:

No, I do not believe they cause autism.
Of course that did not satisfy Rep. Grothman, so he persisted by asking:

How do you KNOW they don’t?
So, I replied:

You asked me if I believe they cause autism. I do not BELIEVE they cause autism because science has not demonstrated that they do.
I then proceeded to put him in his place by telling him the story of my brother who died from a pertussis vaccine in 1966. We know this because science proved it and Congress passed a vaccine compensation program for such medical mistakes. I further informed him that fortunately our son was born after scientists developed a dead virus vaccine which is safe so we could give it to him. I closed with informing him that people who do not give their children vaccines are bringing back diseases into our community and they are a public health menace.
By the time I finished, Rep. Grothman recognized that he was not going to win this argument and our meeting was able to continue in the manner that we desired by discussing the issues that we came to talk about. The lesson, of course, is that well prepared advocates will not get thrown off by those in power who choose to pursue an irrelevant agenda. By speaking truth to power, I was able to provide both personal and fact based information to Rep. Grothman and steer the meeting back to what we came to talk about.

Saturday, July 11, 2020

Driver's License Legislation in Louisiana

[M]any police departments have trained officers and other first responders how to spot signs of autism and respond accordingly. Some organizations have also published identification cards that ASD adults can carry in order to defuse potential conflicts. Virginia provides for an autism designation on driver licenses and other state-issued identification cards. Once again, however, the dilemma of difference comes into play. One autistic Virginian worries: “Great, so if I get into an accident, who’s the cop going to believe, the guy with the autistic label or the guy without it?” Clinical psychologist Michael Oberschneider is concerned about the understanding level of first responders: “I think many people still think of Rain Man or, more recently, the Sandy Hook Shooter, when they think of autism even though very few people on the autistic spectrum are savants or are homicidal and dangerous.”

At.myarklamiss.com/KTVE-TV, Mya Hudgins reports:
Two local women who work for the Autism Society of North Louisiana have spent the last few months working with representative Francis Thompson on a new bill that will protect those on the Autism Spectrum. House bill 317 will allow those with autism to get a symbol placed on their driver’s license, so police and first responders will know immediately that the driver has Autism. The flashing lights, sirens, and not knowing who the officer is could trigger a sensory overload for those on the spectrum.
“Sometimes those on the autism spectrum may have that fight or flight, they may walk off if you are trying to talk to them, they may not have the communication skills, and they may not be able to talk to you,” said Dr. Dawn Stanfield, co-founder of Badge Buddies.
In addition, the bill requires police officers to take a course that will train them on interacting with those on the spectrum. House Bill 317 is a tool for both the driver and the police officer.
“If they have this training and they understand the communication differences and some of the behavior differences with individuals with autism, then they may not misinterpret some of that behavior as being disrespectful or non-compliant,” said Amber Boykin, President of Autism Society of North Louisiana.
...

The bill will go into effect on August 1st of this year. The Autism Society of North Louisiana will have a summer institute training later this month. For more information about the Autism Society Of North Louisiana, click here. To read the entire HB317, click here.

Friday, July 10, 2020

Invisible Disabilities: Hidden Pain

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  One challenge is that autism is an "invisible disability," which does not have obvious physical markers.  

Andrew Solomon at NYT:
The word “disability” evokes images of ramps, lower-positioned urinals, grab bars and other allowances in our architectural landscape. But an untold number of people have disabilities — from A.D.H.D. to addictive disorder to lupus — that aren’t necessarily helped by a reserved parking spot. A person who walks with a limp but uses no physical support may be jostled on the street like anyone else. An autistic person, or a person with a mental illness, will often be disdained or even assailed for peculiar or antisocial behavior.
...
The Center for Disability Rights (C.D.R.) lists the following invisible disabilities: “learning differences, deafness, autism, prosthetics, Traumatic Brain Injury (T.B.I.), mental health disabilities, Usher syndrome, bipolar disorder, diabetes, A.D.D./A.D.H.D., fibromyalgia, arthritis, Alzheimer’s, anxiety, sleep disorder, Crohn’s disease, and many more.” Post-traumatic stress disorder, epilepsy, multiple sclerosis and cystic fibrosis are other invisible disabilities. The C.D.R. cautions, “Unless it is disclosed, no one knows for sure whether someone has an invisible disability.”
...
Societal reactions to hidden disabilities can be harsh. Some parents of autistic children say that it is difficult to be in public with a neurotypical-seeming child who suddenly experiences a huge meltdown because of apparent sensory overload. People stop and stare, offer unsolicited advice or reprimand the parents for their presumed abuse or indifference in the face of their child’s outrageous behavior. People with schizophrenia have been spared some opprobrium by the invention of cellphones and earbuds: It can be hard to tell on the street who is engaged in imaginary conversation with nonexistent people. Yet while people with untreated psychoses are seldom dangerous, their behavior can be erratic and jarring, and because it is not always understood as being rooted in a mental health condition, it often provokes unpleasantness, even violence.
...

Students granted extra time to take a test may be met by the cynicism of peers; some may choose not to avail themselves of a reasonable accommodation because they fear being stigmatized. Working people who require specific environmental conditions — an autistic person, for example, may need an office without florescent lighting — may attract suspicion and even mockery.
Wayne Connell founded the Invisible Disabilities Association in 1996 after his wife was diagnosed with multiple sclerosis and late Lyme disease. He was frustrated by the outside perception that she didn’t have a real infirmity.

Thursday, July 9, 2020

Feds Charge Bleach Quacks

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.

Meagan Flynn at WP:
In April, when President Trump mused whether injecting patients with disinfectant could kill the novel coronavirus, perhaps no one was more thrilled about the suggestion than Mark Grenon.

Grenon runs a fake church with his sons in Florida that sells people a life-threatening toxic bleach product he calls the Miracle Mineral Solution (MMS), federal officials say, which he fraudulently claims cures everything from covid-19 to cancer.

“Trump has got the MMS and all the info!!! Things are happening folks!” Grenon, 62, wrote on Facebook on April 24, linking to Trump’s comments. “Lord help others to see the Truth!”

Grenon had made $500,000 in 2019 alone selling his solutions to thousands of vulnerable, sick people across the country, according to the Justice Department, even though the Food and Drug Administration had warned for years that people could die if they drank MMS products, which are essentially bleach.

From the U.S. Attorney for the Southern District of Florida:
Federal prosecutors in Miami have charged four Florida residents who allegedly marketed “Miracle Mineral Solution,” a toxic bleach, as a cure for COVID-19, with conspiracy to defraud the United States, conspiracy to violate the Federal Food, Drug and Cosmetic Act, and criminal contempt.

Ariana Fajardo Orshan, U.S. Attorney for the Southern District of Florida, and Catherine Hermsen, Assistant Commissioner of the FDA’s Office of Criminal Investigations, made the announcement.

According to the criminal complaint affidavit, Mark Grenon, 62, and his sons, Jonathan Grenon, 34, Jordan Grenon, 26, and Joseph Grenon, 32, all of Bradenton, Florida, manufacture, promote, and sell Miracle Mineral Solution (“MMS”), a chemical solution containing sodium chlorite and water. The Grenons allegedly directed their customers to ingest MMS orally, which causes the solution to become chlorine dioxide, a powerful bleach, typically used for industrial water treatment or bleaching textiles, pulp, and paper. FDA has received reports of people requiring hospitalizations, developing life-threatening conditions, and dying after drinking MMS.
...
The affidavit also alleges that, before marketing MMS as a cure for COVID-19, the Grenons marketed MMS as a miracle cure-all for dozens of other serious diseases and disorders, including cancer, Alzheimer’s, autism, multiple sclerosis, and HIV/AIDS, even though the FDA had not approved MMS for any use. The Grenons allegedly sold tens of thousands of bottles of MMS nationwide, including to consumers throughout South Florida. They sold this dangerous product under the guise of Genesis II Church of Health and Healing (“Genesis”), an entity they allegedly created in an attempt to avoid government regulation of MMS. According to the charging documents, Genesis’ own websites describe Genesis as a “non-religious church,” and Defendant Mark Grenon, the co-founder of Genesis, has repeatedly acknowledged that Genesis “has nothing to do with religion,” and that he founded Genesis to “legalize the use of MMS” and avoid “going [ ] to jail.”
...
Related court documents and information may be found on the website of the District Court for the Southern District of Florida at www.flsd.uscourts.gov or at http://pacer.flsd.uscourts.gov, under case number 20-MJ-03050.

Progress on Screening

In The Politics of Autism, I discuss evaluation and diagnosis of young children.  Screening is an important part of the process.

Paul S. Carbone and colleagues have an article at Pediatrics titled "Primary Care Autism Screening and Later Autism Diagnosis"

From the abstract:
Of 36 233 toddlers, 73% were screened and 1.4% were later diagnosed with ASD. Hispanic children were less likely to be screened (adjusted prevalence ratio [APR]: 0.95, 95% confidence interval [CI]: 0.92–0.98), and family physicians were less likely to screen (APR: 0.12, 95% CI: 0.09–0.15). Compared with unscreened children, screen-positive children were more likely to be diagnosed with ASD (APR: 10.3, 95% CI: 7.6–14.1) and were diagnosed younger (38.5 vs 48.5 months, P < .001). The M-CHAT’s sensitivity for ASD diagnosis was 33.1%, and the positive predictive value was 17.8%. Providers routinely omitted the M-CHAT follow-up interview and had uneven referral patterns.
From the article:
Previous estimates of ASD screening have varied significantly (between 17% and 81%) and relied on physician report of “usual practice.”6,16 Our study, along with 2 recent studies, adds to understanding of ASD screening because estimates are based on data from actual visits rather than physician recall and indicates that, although ASD screening is far from universal, a high proportion of children are screened at least once.10,11
With our study, we provide important insight into disparities in ASD screening; researchers in previous studies suggested that ASD screening in primary care reduces racial and ethnic disparities in ASD identification and age of diagnosis.17 Hispanic children in our cohort were less likely to be screened compared with non-Hispanic white children, a finding supported by one previous study.11 We also found family physicians rarely administered ASD screening tools. The American Academy of Family Physicians does not recommend universal ASD screening, which may explain differences in screening between pediatricians and family physicians.18 No previous studies have had estimated rates of ASD screening among family physicians, although researchers of one qualitative study of a small group of family physicians found that, rather than screening, participants relied on developmental surveillance to identify children with ASD.19 Given that family physicians provide 16% to 21% of pediatric care, this new finding uncovers an opportunity to further increase ASD screening rates in the United States.20
...
Our results suggest progress toward universal ASD screening in primary care practices. Still, only half of children in our study were screened at both 18- and 24-month visits, suggesting further work to be done to encourage providers to complete screens as recommended, with more efforts to screen Hispanic children. Further advocacy and education are needed to encourage family physicians to screen for ASD. More resources are needed for implementing ASD screening at the practice and health care system level, with particular attention to administering ASD screening tools with fidelity, prompt referral of children who are found to be at-risk, and increasing the availability of ASD diagnostic providers to facilitate prompt ASD evaluations.

Wednesday, July 8, 2020

National Disability Voter Registration Week

In The Politics of Autism, I write:  "Support from the general public will be an important political asset for autistic people. Another will be their sheer numbers, since a larger population of identified autistic adults will mean more autistic voters and activists"
Why NDVRW? 
Every year, the REV UP Campaign coordinates National Disability Voter Registration Week (NDVRW) to increase the political power of people with disabilities by sharing resources and getting folks registered to vote. This year, NDVRW is July 13-17. With an estimated 35 million people with disabilities eligible to vote in 2020, we invite state and local organizations to participate in NDVRW in order to raise the disability voice and civic participation across the country!
COVID-19 Update: Although some states are slowly opening up, we are focusing on supporting the disability vote through digital organizing techniques throughout NDVRW!
Getting Involved in NDVRW
Share our Online Voter Registration Portal! Direct folks to AAPD’s custom registration portal at weall.vote/aapd, powered by When We All Vote, where they can register to vote in just a few minutes.
Host a Virtual Event! Host a virtual event to help voters in your state understand the rules, disability voting rights, voting options, safety-protocols, and key dates for the 2020 elections.
Organizing Virtual Text-banking! AAPD has partnered with When We All Vote to use OutVote, an app that helps individuals to use texting to get out the vote among their friends and family. Check out instructions for using OutVote in our NDVRW 2020 toolkit.
Activate your Social Media! Use the power and reach of social media to share our online voter registration portal weall.vote/aapd, motivate your network to register and vote, and inform voters on your state’s election rules and dates.
Use our NDVRW 2020 Toolkit! Our Toolkit provides key resources and info to help you engage with NDVRW!
Access the NDVRW 2020 Materials

NDVRW Resources & Tools

Getting people with disabilities registered to vote is the first step to increasing the political power of people with disabilities. Below are links to tools and resources to help you get involved in NDVRW 2020:
NDVRW Signup Form If you are planning voter registration events or other activities, please keep the REV UP Campaign updated on your efforts!
NDVRW 2020 Toolkit The NDVRW Toolkit includes a guide on how to organize virtual voter registration events, sample social media posts and graphics, and more.
NDVRW Digital Organizing Training On June 10th, AAPD and When We All Vote hosted a training on how to get folks registered through digital organizing strategies.
Online Voter Registration Portal (weall.vote/aapd) Share this online voter registration on social media, on your websites, in your email signature, in newsletters, and more.
NDVRW Press Release Template Use this press release template to share your involvement in NDVRW 2020 in your state and communities.
NDVRW Social Media Graphics Especially during COVID-19, Social Media is an incredibly powerful tool for encouraging people to register and vote.
NDVRW Partners Supporting Organizations will have their name and logo listed on the REV UP website to show the vast support behind the Campaign.
NDVRW Flyer Use this flyer to share information about NDVRW with your partners.
NDVRW Spanish Materials*
*Special thanks to María Vicky Díaz, Dr. Sara M. Acevedo, and Dr. Federico Waitoller with the National Coalition for Latinxs with Disabilities/Coalición Nacional para Latinxs con Discapacidades (CNLD), and Laura Marquez from Paso Del Norte Children’s Development Center for providing Spanish translation.
Additional Ways to Participate in National Disability Voter Registration Week
Write letters to the editor or Op-Eds and engage local radio or TV stations on the growing efforts by the disability community. Check out The Op-Ed Project for tips on writing a compelling Op-Ed!
Organize a candidate town hall event or distribute candidate questionnaires to engage candidates with people with disabilities in your community. As a nonpartisan 501(c)(3) nonprofit organization you must send an invitation to all candidates. Nonprofit VOTE offers additional resources and guides on staying nonpartisan.
Connect with other disability rights and voting rights organizations in your area to partner on events and initiatives during NDVRW.
Ask your Governor, Mayor, City Council, County Commissioner, or State Representative to issue a proclamation declaring July 13-17, 2020, National Disability Voter Registration Week. Find a draft Proclamation here and send any Proclamations you receive to programs@aapd.com!
Find out how other organizations are engaging in NDVRW on our State Resources and Events Page.
Resources from Previous NDVRW’s
2019 REV UP National Organizing Call Recap2018 REV UP National Organizing Call Recap2018 Joint Statement of Support from Senators Dole and Harkin2018 REV UP Graphics

Tuesday, July 7, 2020

Antivaxxers Go Global

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.

Rebecca Speare-Cole at The Evening Standard:
Nearly one in six Britons will refuse a coronavirus vaccine if and when one becomes available in the UK, according to a recent survey.
The findings come amid a significant rise in anti-vaccination sentiment on social media.
In a survey conducted by YouGov on behalf of research group Centre for Countering Digital Hate (CCDH), only 6 per cent of people polled said they would definitely not get vaccinated.

A further 10 per cent also said they would “probably not”, meaning at least 16 per cent are not open to getting inoculated against Covid-19.
Loveday Morris and William Glucroft at WP:
Germany already had a fervent anti-vaxx movement, reflecting a historic skepticism of government control and an affinity for alternative medicine. [You-know-who was big on alternative medicine. -- ed.] Now, health experts have warned that even if a coronavirus vaccine gets approval, refusals could open the way to a resurgence while threatening efforts to keep other preventable diseases in check.

“With such a bad pandemic, there were people that said it would make anti-vaxxers wake up and see that vaccines are important,” said Heidi Larson, director of the London-based Vaccine Confidence Project. “But it’s actually done the opposite.”

Anti-vaxx groups have become highly “active and aggressive,” she said. “I think we are in a vulnerable spot right now.”

In Germany, conspiracy theories over a vaccine abound. Attila Hildmann, a vegan chef, has become one of the leading voices of the resistance, accusing the health minister of promoting a surveillance state and forced-vaccination program at the behest of Bill Gates.
...
Surveys of Germany conducted by the University of Erfurt found that in late June, 64 percent of respondents said they would be willing to get a hypothetical coronavirus vaccine — down from 79 percent in mid-April. The notion of mandatory vaccination was rejected by 38 percent of respondents.
The Australian Broadcasting Corporation:
With some Victorians refusing COVID-19 testing, it has become more important than ever to counter online misinformation, which may be influencing communities in virus hot spots.
In one Facebook post spotted by Fact Check this week, a slick, shareable infographic posted by a newly-created Facebook page claims there is "no evidence" that COVID-19 tests used in Australia are accurate. The post, shared by Friends of Truth, also states they have not been safety tested and are "unapproved".
Reuters:
Anti-vaccine protesters took to the streets in Johannesburg on Wednesday to voice their concern over Africa’s first human trials for a potential coronavirus vaccine.
Last Wednesday, the University of the Witwatersrand in partnership with Oxford University rolled out South Africa’s first clinical trial, which will consist of 2,000 volunteers.
The involvement of South Africa in vaccine trials is intended to ensure the continent will have access to an affordable vaccine and not be left at the back of the queue.
About 50 people held protests at the University of the Witwatersrand in Johannesburg, saying they did not want Africans to be used as guinea pigs, reflecting concerns among some on the continent over testing drugs on people who do not understand the risks.
At The Washington Post, Adam Taylor reports on the earlier measles outbreak in Samoa.