Irondequoit families can now request to put up a sign in their neighborhood indicating an autistic child lives in the area. The state started allowing towns to put up these signs back in May and the town of Irondequoit just got the go-ahead.
Lawana Jones, president of the Rochester Autism Council, said she’s been looking into installing these signs for at least 10 years. She said she’s excited Irondequoit is leading the charge on putting them up locally.
“I think its important because not only are you making the drivers aware that there’s a child in the neighborhood that may wander out into the road, but it also makes your neighbors aware that you’ve got a child in the neighborhood that there are some safety concerns about,” Jones said.
Irondequoit town supervisor Dave Seeley said there are a few boxes to check to get a sign approved. The autistic child is under age 18, the average daily traffic volume in the neighborhood is less than 2,000 cars, the speed limit is 35 miles per hour or lower, and the street is residential.
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Wednesday, September 30, 2020
Tuesday, September 29, 2020
In The Politics of Autism, I discuss the issue's role in campaign politics. In the 2016 campaign, a number of posts discussed Trump's bad record on disability issues more generally. As his actions as president indicate, he has little use for Americans with disabilities.
A long-established federal autism advisory committee charged with coordinating the government’s activities related to the developmental disorder has been defunct for the last year.
Every member of the panel known as the Interagency Autism Coordinating Committee, or IACC, saw their term expire at the end of last September. To date, no new members have been appointed.
The committee comprised of federal officials and members of the autism community last met in July 2019. Nominations for new members were being accepted between Nov. 19, 2019 and Feb. 21, 2020.
The National Institute of Mental Health’s Office of Autism Research Coordination, which manages the IACC, is working to seat a new committee, according to Susan Daniels, director of the office.
“The IACC selection and appointment process is underway. We are hopeful that appointments will be made in the fall of 2020,” she said in a statement to Disability Scoop. “Once the new committee members are appointed, a formal announcement will be made and meetings and other activities of the IACC will resume. IACC publications have continued and will continue.”
The NIMH declined to answer any further questions about the status of the committee.
Monday, September 28, 2020
Unfortunately, Republican politicians are increasingly joining up with the anti-vaxxers.
Conspiracy theories, debunked notions and flat-out lies have erupted in political races across the country in this presidential election year, and Idaho is not immune.
In the race for a Boise district seat in the Idaho House of Representatives, a GOP candidate has used her social media accounts to openly share falsehoods and discredited conjecture on a variety of topics.
Republican Jackie Davidson is running in legislative district 16 B against Democrat Colin Nash. The seat was previously held by Rep. Rob Mason, D-Boise, who served one term and is not running for re-election.
Davidson’s Facebook page contains inaccurate information and conspiracy theories about the coronavirus, vaccines and the so-called “plandemic,” and unfounded allegations about well-known people such as Bill Gates, Dr. Anthony Fauci and George Soros. She has shared posts that were taken down by Facebook.
When interviewed by the Statesman recently, Davidson generally stood by the posts....
When it comes to childhood vaccines, Davidson says it should be a parent’s choice.“I think they are just giving too many,” Davidson said about vaccines. “I think it needs to be looked at. There’s kids who are getting damaged. I’m not against vaccines. I am concerned that they are giving too many vaccines to the children, and it’s causing things like autism.”
On June 15, Davidson posted a link on Facebook claiming that “there was no autism in Vietnam before Bill Gates brought his vaccines.” She called Gates “Enemy #1 in terms of our children.”
That’s false. There is no evidence that vaccines cause autism, according to many studies, and there is no evidence that vaccines funded and delivered by the Bill and Melinda Gates Foundation caused harm to children.
“Personally, having a brother who has autism, I find it personally offensive when people spread conspiracy theories about disproven links between vaccines and autism,” Nash told the Statesman when asked about Davidson’s posts. “That one hits home for me.”
Davidson is parroting Trump, who has often spread the false notion that combination shots cause autism. The tell is the line "It needs to be looked at," which is a Trump catchphrase.
Sunday, September 27, 2020
If we can land a man on the moon, why can’t we cure autism? Frustrated parents may ask that question, remembering that when John F. Kennedy committed the United States to go to the moon, NASA scientists and engineers figured out how to get there. Ever since Neil Armstrong stepped off the lunar module in 1969, politicians have held up the Apollo project as a model for solving all kinds of problems. But autism is not rocket science. Contrary to the usual meaning of that expression, I hardly suggest that autism science is simple; rather, it is more puzzling than rocket science.
When the moon program was getting under way, there was consensus about the fundamental terms and facts. Although the engineering details were challenging, the basic math and physics behind the mission dated back to Isaac Newton. Autism is different. As we have already seen, it is a contested concept with many uncertainties. Just picture an Apollo program in which experts saw different kinds of moons in different parts of the sky and were not quite sure about the laws of motion.
Ann Wagner, Leslie Caplan, Denise Juliano-Bult, and Nicole Williams have a guest editorial at Autism in Adulthood titled "Improving the Rigor of Research on Autism in Adulthood Requires Valid and Reliable Measurement Tools."
Largely through the efforts of autistic self-advocates, families of autistic youth transitioning to adulthood, researchers, and concerned caregivers and policy makers, there is increasing recognition that autistic adults face unique challenges and that the supports and services available to them are often inadequate or inaccessible.1 Across the globe, we are hearing about the urgent need to do a better job of reducing barriers to the full social, economic, and political participation of autistic people in society.2–4 As government employees who oversee programs that provide research grant funding, we want to highlight the importance of rigorously designed research that evaluates the impact of interventions and policies on the people they are meant to help. The availability of valid reliable tools to evaluate the impact of interventions and policies is absolutely critical but is often overlooked. ...
We describe three U.S. federal funding programs here that can support the development of outcome measures, but it is important to note that there are other research funding sources within the United States and internationally12–15 that could support such efforts.
- The Autism Research Program (ARP), under the Department of Defense CDMRP, is focused on supporting research that will lead to better outcomes to ultimately improve the lives of individuals on the autism spectrum.11 To reach this goal, the ARP developed a four-faceted strategy11 that includes funding high-impact research to address major knowledge gaps in autism research, invest in projects with potential for immediate implementation, invest in projects with potential for broad dissemination, and focus on novel ideas that fulfill the needs of the autism community and maintain high scientific rigor. One of the program's strategic goals is to fund research centered on addressing the needs of autistic people into adulthood. Since 2013 the ARP has invested in research aimed at determining key factors of success in the transition to independence and developing interventions that promote successful transition. The ARP will continue to make investments in this area of research, as addressing the needs of autistic individuals into adulthood remains one of the four strategic goals of the program.
- The National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) funds applied research and development, including autism-related research, that address the following mission: “To generate new knowledge and promote its effective use to maximize the full inclusion and integration into society, employment, independent living, family support, and economic and social self-sufficiency of individuals with disabilities of all ages.”16 NIDILRR funds research and development that supports full inclusion and integration into community and society in three outcome domains: health and function, community living and participation, and employment. NIDILRR supports measurement development in all of these domains. NIDILRR is housed in the Administration for Community Living, U.S. Department of Health and Human Services.
- The National Institute of Mental Health (NIMH) supports a broad range of research on autism, including studies of the brain and other biological aspects of autism, research to refine and improve diagnostic tools and outcome measures, and developing effective treatment and services tailored to important life stages of people on the autism spectrum. Areas of emphasis include improving access to care and supports and optimizing capacity for independent functioning and community integration for children, transition-age youth, and adults on the autism spectrum. With attention to differences across communities, care settings, and systems, intervention strategies must be designed for rapid adoption and implementation on a broad scale. NIMH is a part of the National Institutes of Health, U.S. Department of Health and Human Services.
Saturday, September 26, 2020
Governments which design policies to empower marginalized groups contribute to reducing the democratic deficit in public policy and improve their efficacy, efficiency, and democratic credentials. This article uses fuzzy set ideal type analysis to propose three ideal types of policy design for political empowerment, according to whether the government views the target group as capable only of being Informed by experts, or of being Involved in policy, or even Empowered to co‐govern. An analysis of Western European autism policy illustrates and confirms the usefulness of the ideal types. England, Wales, and Denmark emerge as countries where governments have the highest expectations for political empowerment. Surprisingly, traditional disability policy groupings seem not to apply, with the UK split across Empowered and Involved, while Spain leaves its Informed Southern European counterparts to join the Involved cohort. This paper is a timely reminder of the importance of lived experience as a policy resource lived experience as a policy resource.
From the article:
Autism policy has evolved as a discrete subset of disability policy in Western Europe over the past twenty years, with fifteen new autism policies arriving on the policy scene in response to concerns that autistic people were “falling through the gaps” of disability policy (Ravet, 2015). The neurodiversity movement argues that autistic people have untapped potential which remains unrealized due to a hostile environment (Arnold, 2017; Donaldson, Krejcha et al., 2017; Kapp, 2020; Kapp, 2013). If this is true, the autistic community has much to gain from empowerment, and their statistical over‐representation among the under‐employed, unemployed (Mavranezouli, Megnin‐Viggars et al., 2014), and those involved with the mental health (Maddox & Gaus, 2019) and criminal justice systems (King & Murphy, 2014) is all the more concerning.
Friday, September 25, 2020
At MMWR, Rebecca Leeb and colleagues have an article titled "Support for Transition from Adolescent to Adult Health Care Among Adolescents With and Without Mental, Behavioral, and Developmental Disorders — United States, 2016–2017."
They find that adolescents with diagnosed mental, behavioral, and developmental disorders (MBDDs) -- including autism -- are likely to disengage from and experience gaps in health care as they approach adulthood.
Consistent with recent findings (2,3), this study found that a minority of U.S. adolescents receive recommended transition planning. Overall, rates of transition planning are higher among adolescents aged 15–17 years than among their younger peers (aged 12–14 years) suggesting that PCPs might be addressing transition to adult care as the transition becomes imminent. However, among adolescents aged 15–17 years, only 21.5% of those without MBDDs and 19.5% of those with MBDDs were receiving transition planning guidance, indicating a significant gap in transition planning for all adolescents.
Three subgroups of adolescents with MBDDs might be especially vulnerable to transition planning gaps. First, adolescents with ASD and other developmental disorders were least likely to meet the transition measure, suggesting that PCPs should work with families to better address the transition needs of these adolescents (3). Second, although adolescents with behavioral and emotional disorders had similar or higher levels of transition planning than did adolescents without MBDDs, only one in five adolescents with emotional disorders, and one in seven adolescents with behavioral disorders met the transition measure. Adolescents with behavioral and emotional disorders are at increased risk for disengagement from health care services during the transition to adult care, which can result in poor health outcomes (1,6,8). Finally, fewer than 20% of adolescents receiving medication, behavioral treatment, or both for MBDDs met the transition planning measure; this group might benefit from an increased emphasis on transition planning. Treatment continuity from adolescence into young adulthood is critical to long-term mental and physical health, and support during transition can increase the likelihood of maintaining adherence to current treatment (1,4,5). Together, these findings suggest increased attention to the transition needs of adolescents with MBDDs is warranted.
Thursday, September 24, 2020
[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.”
As somebody living with autism who had to fight to build self-esteem and find true happiness in an essentially non-autistic world, I consider the use of the word "disability" in public discourse about autism to be a mixed bag. On a societal level, labeling autism a disability is clearly essential when it comes to justice for all of the Linden Camerons and Neli Latsons of the world who pay an unjust price as a result of improper treatment under the law. The Americans with Disabilities Act and the Individuals with Disabilities Education Act necessitate referring to autism as a disability if autistic individuals who require government assistance or special accommodations in school are to receive the services they deserve. Furthermore, it is very understandable for people with more moderate or severe autism spectrum profiles and those who work with and care about them to view autism as a disability. But what do you do if you are autistic and actively working on learning how to accept and love who you are, yet you are having to do so while being looked upon by society as being disabled? In this respect, the necessity for society to label autism a disability is deeply regrettable to me in that it will inevitably interfere in the process of building self-esteem for at least some people living on the spectrum.
Wednesday, September 23, 2020
But there’s a broader problem, says Seema Yasmin, a Stanford physician and expert on health misinformation. Conspiracies, Yasmin says, thrive in the absence of clear and consistent guidance from leaders. As the pandemic wears on, the Trump administration continues to contradict itself, sending mixed messaging on testing, schools, masks, and social distancing—not to mention the possible vaccine. Parents are left to their own devices, relying on incomplete information to keep their families safe. “We are in a state of heightened anxiety and fear, and we’re looking for a way to understand what’s happening in the world,” Yasmin said. “Charlatans are plugging those knowledge gaps. They’re saying completely false things with a sense of authority.”
The spread of misinformation isn’t restricted to local parenting groups—it’s also flourishing in holistic child-rearing and natural birth communities. On his Facebook page, Dr. Bob Sears, an attachment parenting guru and vaccine critic with 97,000 followers, rails against school closures and COVID vaccines. Based in Southern California, he has invited his local followers to attend “freedom rallies” protesting mandatory masks and social distancing measures. In his podcast, “The Vaccine Conversation,” he promotes the discredited coronavirus treatment of hydroxychloroquine and celebrates citizens who are “pushing back against state government” on mask mandates and business closures.
While Sears doesn’t explicitly mention any of the more far-fetched QAnon ideas, his followers do in the comments. “It will take the entire world to stop the corruption of Bill Gates, the World Health Org, the CDC and the FDA, collectively known as the ‘#medicalmafia,’ reads one comment on a post criticizing the idea of a mandatory COVID vaccine. In response to a post in which Dr. Sears praises the CDC for calling for schools to reopen, one commenter speculates that the CDC is “planning some 5G rollouts in/near schools which will help fuel their ‘second wave’ narrative.”
But it can be difficult to figure out how to change the minds of people who are convinced that they are correct. In a recent advice piece about conspiracy theories spreading through online parenting communities, The New York Times suggested, “If it’s someone you don’t know personally, respond with facts.” That’s a start, but Yasmin, the Stanford physician and health misinformation expert, believes that approach might not be enough. “More and more I’m seeing that misinformation and disinformation are packaged with political information—vaccines and masks are anti-freedom, anti-American,” she says. “You don’t counter that by citing studies. These are tied into beliefs about freedom and what it means to be American.” In other instances, the misinformation is packaged in a way that’s meant to tug at parents’ heartstrings —say a story about a child who died after receiving a routine vaccination. In order to combat misinformation, Yasmin says, pro-science groups will have to beat the purveyors at their own game, finding effective ways to reach fellow parents. One idea that some vaccine advocacy groups are already trying out: sharing stories of children who died of vaccine-preventable diseases. “Compelling and well-told stories on parenting sites—those can really connect with parents,” she says. “They offer an emotional connection that’s very hard to counteract with facts.”
Tuesday, September 22, 2020
In The Politics of Autism, I discuss interactions between police and autistic people. Police officers need training to respond appropriately. When they do not, things get out of hand. A recent incident in Salt Lake City is getting national attention. Police shot an unarmed teen named Linden Cameron.
Monday, September 21, 2020
Often lost in the day to day of life are the big moments in history that make today possible. Today, a life in the community for millions of people with disabilities is possible because of the actions of those who came before them, that led to justice. We mourn the loss of one of those champions, U.S. Supreme Court Justice Ruth Bader Ginsburg, who wrote the opinion in the landmark ruling affirming that unjustified segregation of people with disabilities is discrimination.
“Thirty years ago, the Americans with Disabilities Act transformed the country in important ways, changing expectations for the lives of people with disabilities. Thanks to the work of countless committed advocates, we have taken meaningful steps toward the elimination of discrimination against individuals with disabilities. Two advocates that carried the promise of the law all the way to the Supreme Court were Lois Curtis and Elaine Wilson. Their bravery and refusal to live behind the dark walls of institutions led to the landmark U.S. Supreme Court Olmstead v. L.C. decision in 1999. The case established that unjustified segregation of people with disabilities is discrimination under the Americans with Disabilities Act – and that people with disabilities have a right to live in the community rather than institutions.
“In the opinion, Justice Ginsburg focused on the fact that ‘institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable of or unworthy of participating in community life.’
“This big moment, and her staunch affirmation of the human dignity of people with disabilities and their rightful place in the community of their choice, fundamentally changed the course of the lives of hundreds of thousands of people with disabilities. With this history in our hearts, we will carry on our fight for inclusion and justice for all people with disabilities,” said Peter Berns, CEO, The Arc.
From Ginsburg's concurrence in Tennessee v. Lane, 541 U.S. 509 (2004) (h/t Robyn Powell)
Including individuals with disabilities among people who count in composing “We the People,” Congress understood in shaping the ADA, would sometimes require not blindfolded equality, but responsiveness to difference; not indifference, but accommodation. Central to the Act’s primary objective, Congress extended the statute’s range to reach all government activities, §12132 (Title II), and required “reasonable modifications to [public actors’] rules, policies, or practices,” §§12131(2)–12132 (Title II). See also §12112(b)(5) (defining discrimination to include the failure to provide “reasonable accommodations”) (Title I); §12182(b)(2)(A)(ii) (requiring “reasonable modifications in [public accommodations’] policies, practices, or procedures”) (Title III); Bagenstos, supra, at 435 (ADA supporters sought “to eliminate the practices that combine with physical and mental conditions to create what we call ‘disability.’ The society-wide universal access rules serve this function on the macro level, and the requirements of individualized accommodation and modification fill in the gaps on the micro level.”
Apart from her legendary dissents on the Supreme Court of the United States, Ginsburg is perhaps best known for the six cases she argued before the court as director of the ACLU Women’s Rights Project, a position I’m privileged to hold now. In 1973, the year Ginsburg had her first argument before the high court, she and the Women’s Rights Project co-founder, Brenda Feigen, filed a federal lawsuit in North Carolina on behalf of Nial Ruth Cox, a Black woman who had been forcibly sterilized in 1965 as part of a gruesome state eugenics program targeted at people with mental disabilities.
Sunday, September 20, 2020
We reviewed federal special education data to determine school-identified prevalence of Autism Spectrum Disorder (ASD) and other disability categories by U.S. state. We also examined whether state-level policies, demographic factors, and rates of other eligibility categories are predictive of these state ASD rates. Results indicate that overall, 1 of 81 school-aged children are served under an ASD special education eligibility. State-level demographic factors, such as socioeconomic status and political leanings were highly predictive of rates of ASD. States with higher rates of ASD had lower rates of intellectual and learning disabilities, but higher rates of Other Health Impairment (OHI).
The results from this study provide further support for the idea that ASD prevalence rates by state are associated with SES factors, including the proportion of special education students being served under an ASD eligibility (Palmer et al. 2005; Sullivan 2013; Thomas et al. 2011). Despite evidence that SES factors and race/ethnicity are intertwined in their relation to ASD identification (Fountain et al. 2011), we failed to improve our model by including race as a predictor. Our findings also indicate that political leanings on the state level might be partially implicated in these discrepancies. In fact, the model that included political leanings explained about 6% more of the variance in ASD rates than did the model including only income and education as predictors. After removing the outlier of Iowa, the model of just state-level demographic factors of politics, household income, and average adult education accounted for 40% of the proportion ASD by state. This same model failed to predict the overall proportion of students in special education by state, indicating that ASD specifically, and not simply special education services, is tied to these demographic factors. Interestingly, states with centrist politics had higher ASD rates than Democratic or Republican states after controlling for income and education. While the reason for this specific group difference warrants further investigation, the overall finding implicates the role of politics in ASD prevalence at the state level. This may be due to the impact of either policies or simply collective values within states around different special education eligibility categories.
Saturday, September 19, 2020
The search for a missing 6-year-old with autism in 2018 left a profound impression on the North Carolina community where the boy went missing—and on the FBI’s teams that specialize in finding children who suddenly disappear.
Since then, a special agent on the FBI team that assisted in the search for Maddox has developed a one-page questionnaire for investigators to use when a child with autism goes missing.
“I wanted to make sure that if I had another opportunity, I’d be ready,” said Special Agent James Granozio, who works in the Bureau’s Charlotte Field Office and also leads one of the FBI’s four regional Child Abduction Rapid Deployment (CARD) Teams. These teams are composed of agents, intelligence analysts, operational specialists, and behavioral analysts who deploy on short notice when police departments request FBI assistance in missing child cases.
After the Maddox case, Granozio learned all he could about autism and autistic children, reaching out to local and national organizations for information. The feedback led to the development of the checklist of baseline questions that Granozio said should be asked immediately of parents or caregivers of missing autistic children.
“I want to know from the family early on: Does the child have a tracking mechanism? Is the child afraid of water or do they like water? If they like water, do they know how to swim?” said Granozio. “What about traveling at night? Is the child scared at night? Will they hunker down or will they like to move? All these things I want to know early on, and hopefully we can save a life.”
The questionnaire has been circulated among the FBI’s CARD Team, which includes approximately 75 members in FBI field offices across the country. They, in turn, have distributed the material to local law enforcement agencies during training exercises on child abductions and joint search and rescue operations. The CARD Team holds multiple table-top-style exercises every year to prepare local law enforcement on how to properly respond to the infrequent events.
When the CARD Team deploys, Bedford said, trainings provided to our law enforcement partners have proven to be particularly beneficial because everyone already knows how to work alongside the CARD Team. “So when the CARD Team comes in, the lead investigative agency doesn’t need to waste time developing a plan, they’ve got a very effective playbook that they can roll out immediately. And I think local departments really appreciate that.”
Friday, September 18, 2020
In The Politics of Autism, I discuss interactions between police and autistic people. Police officers need training to respond appropriately. When they do not, things get out of hand. A recent incident in Salt Lake City is getting national attention.
When Darlene McDonald read about Salt Lake police officers shooting a 13-year-old autistic boy whose mother had called for help with a mental health episode, she saw herself in the tragic situation.
But when the mother of an autistic young man and member of Salt Lake City’s newly formed Racial Equity in Policing Commission learned that a new policy about enhanced de-escalation tactics went into effect hours after he was shot, she was “floored.”
“So this seemed to me that there was a disconnect, either between what we thought was already in place or what’s not in place,” said McDonald, who chaired Wednesday night’s commission meeting that discussed several specific policies, conducting a survey of Salt Lake officers, police officers in schools and the possibility of pairing officers with commissioners for research purposes.
“Is that something that you could speak to because when I read that article, I almost hit the floor. I was so shocked by that,” McDonald asked.
Salt Lake Police Chief Mike Brown was listening to the virtual meeting, and he responded to the concerns by letting her know the new policies were refining what already existed.
“With these new policies, we’re going to try to expand upon it, and we’re going to really talk about when we do it, but also report back,” he said. “Again, we’re going to foot-stomp that even more into the culture of our organization.”
He mentioned that officers are recognized for utilizing de-escalation tactics, and a commissioner asked for more insight into what kind of accountability there is for officers who fail to utilize these techniques.
Thursday, September 17, 2020
Tuesday, September 15, 2020
Some parents I know have been told that their child’s I.E.P. simply can’t be fully met while distance learning persists — that they will receive not only less instruction than usual but also far less of the individualized support that makes that instruction meaningful. “I think most families are being reasonable, but students’ rights don’t change during a pandemic,” says Julia Bascom, executive director of the Autistic Self Advocacy Network. Denise Stile Marshall, the chief executive of the Council of Parent Attorneys and Advocates, emphasizes that there have been no waivers to schools’ obligations to disabled students. “You can amend the I.E.P. with mutual consent of parent and district, and you can create an addendum based on what’s feasible given the current conditions,” Marshall says, “but parents and administrators need to remember that ‘doing the best you can’ is not the legal standard.”
“I think most schools’ approach to students with I.E.P.s was to desperately hope they’d be able to have in-person instruction in the fall,” Bascom says. But even if the option of some on-site learning eventually materializes in our district, I wonder about the impact on my autistic child. She needs a consistent routine to feel secure; will switching between home- and school-based instruction make it harder for her to focus? If she struggles to keep a mask on all day, will she face discipline? Will teachers be able to guide and support her — and all other students with their varying needs — from six feet away? Tiffany Jeng, a speech-and-language pathologist who worked with disabled students in on-site Extended School Year classes this summer, says: “It was impossible to maintain six feet between us and our students, and not only because we’re used to giving therapy sitting right next to or across from kids. Many kids need close proximity to understand what we’re asking of them.”
Monday, September 14, 2020
When Jenny takes the baby to its checkup with the pediatrician, Dr. Smith brings up its vaccine schedule. Jenny refuses and has come armed with information she's pulled from her sources on the internet and in books. She insists that there's mercury in vaccines that causes autism. She lists chemicals with long names that are in vaccines. Dr. Smith is taken aback. She agrees to delay but will try to persuade Jenny again at the next office visit. At the next office visit, Dr. Smith has come prepared with responses to the anti-vaccine claims made by her patient. However, for every answer she can provide, Jenny has a rejoinder. The pediatrician is again delayed in vaccinating. Jenny feels ambushed by Dr. Smith. "I've done my research," she says. "As a mother, I know what's best for my own child, better than anyone else."
Jim and Jenny feel they've done their best for their child. They identified a potential danger, did research, and avoided that danger, which is the duty of good parents, after all. When Dr. Smith tried to convince them with facts and data alone, she failed because Jim and Jenny knew they shouldn't just trust whatever the pediatrician says. Long gone are the days of paternalism when the doctor knows best and a patient should simply listen and do what they're told. Jim and Jenny are active in their own health care and that of their children.
What could Dr. Smith have done to convince Jenny to go ahead with vaccination? What can municipalities, neighbors, and friends do to help Jim and Jenny make better choices? Dr. Smith was operating from an information-deficit model. She believed that Jim and Jenny simply didn't have enough information. However, Jim and Jenny have more than enough information. It's just bad information. The bad information came from people whom Jim and Jenny trusted, friends and family. The good information came from an authority figure.
Imagine how this scenario would have played out if someone on the Measlton Moms Facebook group had stepped forward after that initial post to say "I had all three vaccinated, and they're doing great." Or if there had been another post with a picture of a smiling child with the caption "She just got her 24-month booster shots!" Perhaps if the sources that presented themselves when Jim and Jenny set out to do research had been better, they might have stopped themselves. Jim may have been directed to New Scientist, Scientific American, or another mostly reliable source, rather than to InfoWars and Natural News. Amazon's algorithm may have directed Jenny to books by Paul Offit, rather than to books by vaccine denialists.
Sunday, September 13, 2020
Ashley Imlay at The Deseret News:
When 14-year-old Gabe Smith learned from his parents Saturday that a 13-year-old boy on the autism spectrum was shot and injured by police last week while having a crisis, it hit close to home.
“I felt pain, felt physical pain. I felt like I was having a heart attack. It just hurt, and I ignored it the best I can,” recalled Gabe, who is also on the spectrum.
The news brought back his own memories.
“At my school, when the police officer took me down when I was upset and hitting my head against a window, (he) grabbed my arm and pushed me on the ground and held me for five minutes, I remembered that,” he said.
That’s why the family showed up for a small but emotional rally Saturday in support of Linden Cameron, the 13-year-old who was shot and injured by police.
About 40 people gathered in front of the Ogden Municipal Building to speak against police brutality and call for understanding and compassion for those with mental illness and disabilities. Some of the ralliers were also members of the Black Lives Matter movement in Utah.
During the rally, a few carried signs with slogans such as: “You have no authority to shoot a child,” “Crisis management not cops,” “Justice for Linden Cameron, we stand with you.”
On Sept. 4, after police came into contact with Linden in the area of 500 South and Navajo Street (1335 West), the boy ran from officers. A short time later, shots were fired. Salt Lake Police Sgt. Keith Horrocks told reporters at the scene that night that the boy “had made threats to some folks with a weapon,” but also stated he did not believe any weapon was recovered from the scene.
Saturday, September 12, 2020
The health department’s politically appointed communications aides have demanded the right to review and seek changes to the Centers for Disease Control and Prevention’s weekly scientific reports charting the progress of the coronavirus pandemic, in what officials characterized as an attempt to intimidate the reports’ authors and water down their communications to health professionals.
In some cases, emails from communications aides to CDC Director Robert Redfield and other senior officials openly complained that the agency’s reports would undermine President Donald Trump's optimistic messages about the outbreak, according to emails reviewed by POLITICO and three people familiar with the situation.
CDC officials have fought back against the most sweeping changes, but have increasingly agreed to allow the political officials to review the reports and, in a few cases, compromised on the wording, according to three people familiar with the exchanges. The communications aides’ efforts to change the language in the CDC’s reports have been constant across the summer and continued as recently as Friday afternoon.
The CDC's Morbidity and Mortality Weekly Reports are authored by career scientists and serve as the main vehicle for the agency to inform doctors, researchers and the general public about how Covid-19 is spreading and who is at risk. Such reports have historically been published with little fanfare and no political interference, said several longtime health department officials, and have been viewed as a cornerstone of the nation's public health work for decades.
But since Michael Caputo, a former Trump campaign official with no medical or scientific background, was installed in April as the health department's new spokesperson, there have been substantial efforts to align the reports with Trump's statements, including the president's claims that fears about the outbreak are overstated, or stop the reports altogether.
Caputo and his team have attempted to add caveats to the CDC's findings, including an effort to retroactively change agency reports that they said wrongly inflated the risks of Covid-19 and should have made clear that Americans sickened by the virus may have been infected because of their own behavior, according to the individuals familiar with the situation and emails reviewed by POLITICO.