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Friday, September 21, 2018

Autistic Person Is a Statewide Candidate in Georgia

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"

Adam Murphy reports at WGLC-TV in Atlanta:
At State Farmer's Market in Macon, fresh fruits and vegetables aren't the only thing that's home-grown.

Born and raised in central Georgia, Fred Swann is running for statewide Commissioner of Agriculture, but it's not the only challenge he's facing.

"No challenge for someone on the autistic spectrum, no challenge it presents should hold them back from being a contributing member of society, even a politician," said Swann.

He's not only autistic, he's now the Democratic nominee for office.

"The outpouring of affection and support that I have gotten has been overwhelming," said Swann.



From his campaign website:
I was born and raised in Middle Georgia, in both Warner Robins and Macon by a single mother. For most of my childhood, she worked two, sometimes three jobs just to make ends meet to provide for our family, instilling in me the value of hard work. I spent much of my childhood with my grandparents.
After he retired, my grandfather took up farming on a side acre of land. He grew tomatoes, corn, snap peas, and other assorted crops. Today, he would be called a micro farmer. To him, he was just filling his days with productive work.
He would send his family home with bags of produce from his land. He also sold tomatoes on a roadside stand for extra money. I helped him work the land, pull weeds, really anything he needed. In exchange, I learned valuable lessons about hard work and developed a strong appreciation for our farmers. As a person with autism, I never forgot how therapeutic that work was for me.
Swann discusses autism at about 6:50 in this video:

Thursday, September 20, 2018

Special Education In Puerto Rico


Kyra Gurney reports at The Miami Herald:
It was the second day of the new school year in Puerto Rico, but 7-year-old Angel Torres wasn’t in class. He was at a physical therapy session, struggling once again to stand on his own, when the boy’s therapist asked his mom how school was going.
“Bad. Terrible,” Brenda López said, frustration spilling out. “The classroom isn’t suitable for him.”
A year after Hurricane Maria changed almost everything on the island, hundreds of parents like López were left struggling to find classrooms, teachers and therapists for their children with autism, Down syndrome or cerebral palsy. What had been a daunting task before the storm — finding a place where their special needs children could thrive — had become vastly harder afterward, as the government shuttered more than 250 schools and the education department scrambled to relocate students and staff. The Department of Education said in late August that it still needed to fill 132 vacancies for special education teachers. And that meant some kids like Angel, who has cerebral palsy and cannot walk on his own or talk, were left in limbo.

Wednesday, September 19, 2018

Grandparents

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families

A family systems approach is required to identify the needs of families of children with autism. This paper explores how grandparents support children with autism and their parents using a family systems perspective. A thematic analysis of eighteen semi-structured interviews was conducted with participants from nine [Irish] families, capturing experiences of both parents’ and grandparents’. Themes identified were family recalibrating; strengthening the family system; and current needs and future concerns of grandparents. The views of families indicated the overwhelming need to acknowledge the grandparental role in supporting families that strengthen the family system by supporting the needs of a child with autism. Findings revealed that grandfathers have a calming role in these families where children have significant behavioural difficulties.
From the article:
Grandparents of children with ASD provide supports, not only to the children themselves, but also to their son or daughter whose child has autism. To reduce the burden families can experience, they would benefit from a family systems approach to empower grandparents to respond proactively to the needs of the family. It is incumbent upon professionals to devise supports to meet this need and to give recognition to grandparents of the valuable role they play. This research is a rallying call to professionals to consider the roles of grandparents more formally in their interactions with families of children with autism, and to identify supports to meet grandparents’ needs that ultimately improve the functioning of the family system

Tuesday, September 18, 2018

Opioid Withdrawal and Autism

In The Politics of Autism, I discuss various ideas about what causes the conditionHere is just a partial list of correlatesrisk factors, and possible causes that have been the subject of serious studies:

Christina Samuels at Education Week:
Researchers examined the educational status of a group of Medicaid-eligible children in Tennessee ages 3 to 8. Some of those children were born with neonatal abstinence syndrome, meaning that they spent their earliest days coping with the health effects of opioid withdrawal. The other children were not diagnosed with the syndrome.
The children who faced opioid withdrawal as babies were more likely to be evaluated for special education services and, once evaluated, were more likely to be found eligible, according to the report, published in August in the journal Pediatrics. Most of the children's disabilities were in five categories: autism, developmental delay, "other health impairment," specific learning disability, and speech and language impairments

Monday, September 17, 2018

Another Step Forward for the EMPOWER Care Act

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

David J. Totaro, Chairman of the Partnership for Medicaid Home-Based Care (PMHC), issued the following statement on the House Energy & Commerce Committee passage of H.R. 3891 and H.R. 5306, two bipartisan measures that would improve the Medicaid program by strengthening access to and the integrity of home and community-based services.

"PMHC is grateful for the bipartisan support that the Committee has provided for H.R. 5306, the Ensuring Medicaid Provides Opportunities for Widespread Equity, Resources, and Care Act (EMPOWER Care Act). Introduced by Representatives Brett Guthrie (R-KY) and Debbie Dingell (D-MI), this measure reauthorizes the highly successful Money Follows the Person (MFP) demonstration program.

"The Money Follows the Person program was first authorized in the Deficit Reduction Act of 2005 with strong bipartisan support. Since that time, MFP has enabled an estimated 75,000 older adults and individuals with physical, intellectual, and developmental disabilities, to transition from institutional settings back to their homes and communities.

"Unfortunately, MFP's authorization expired over a year ago, and states have been operating through no-cost extensions. Eight states have already run out of MFP grant funds, and it is projected funds will run out for the remaining participants by the end of 2018. As a result, these states are already in the process of scaling back their programs and reducing dedicated staff and resources.

"As amended, the EMPOWER Care Act rectifies this situation by reauthorizing MFP through 2019. In addition, this important legislation improves the MFP program by reducing from 90 to 60 the number of days an individual must be in a nursing home before becoming eligible to transition to their homes or community settings. In addition, the EMPOWER Care Act enhances the reporting and accountability of MFP funding and requires HHS to conduct a best practices evaluation that will include the most effective strategies for transitioning beneficiaries from institutions to their homes or qualified community settings.

"As a result of its attributes, passage of the EMPOWER Care Act will strengthen access and reduce program costs by ensuring that individuals who could be helped by MFP to live in their homes and communities are not instead forced into an institution or to remain segregated in an institution.

"PMHC is also pleased to endorse H.R. 3891, which we believe will strengthen the Medicaid program's ability to protect those served by the program from abusive activity. We are particularly grateful for this legislation's expansion of scope for Medicaid Fraud Control Units (MFCUs) so they can better identify, investigate, and prosecute instances of patient abuse, or neglect.

"MFCUs play a vital role in securing the integrity, efficiency, and effectiveness of the Medicaid program. However, MFCUs are currently restricted in their efforts to investigate patient abuse and neglect complaints in certain settings. H.R. 3891 empowers MFCUs to undertake this activity across all settings.

"We believe H.R. 3891's introduction by Representatives Tim Walberg (R-MI) and Peter Welch (D-VT) will do much to strengthen the integrity of the Medicaid program. We also look forward to working with the Committee on additional reforms that PMHC has proposed to protect the individuals who depend on Medicaid services from fraud, abuse, and neglect.

"Thanks to these measures, Medicaid recipients may soon realize strengthened access to high-quality, low-cost, consumer-preferred home and community-based services. We are confident decision makers will achieve improved outcomes and significantly reduced program costs from their efforts, and we look forward to working with lawmakers as they continue their important work to strengthen individuals' access to high-quality, high-value home-based care."

PMHC is comprised of organizations representing home care agencies, associations, MCOs and other payers, and business affiliates who have come together to improve the quality and integrity of Medicaid funded home- and community-based services (HCBS). Recognizing the integral role of home- and community-based care in the Medicaid program, PMHC is dedicated to advancing and supporting public policies that strengthen the Medicaid program for recipients and taxpayers alike.

Sunday, September 16, 2018

Amazon Allows Sale of Quack Autism "Cure"

In The Politics of Autism, I discuss autism quackery.  One particularly dangerous"cure" involves bleach.

Over the past few months, I have been working on exposing and uncovering individuals that sell miracle cures. Individuals that attempt to sell products that “cure” or “treat” an illness in the United States are subject to regulations enforced by the Food and Drug Administration. A miracle cure used by parents to “cure” autism Miracle Mineral Solution (MMS) is not legal for sale for internal use in the United States. However, vendors use Amazon to sell Miracle Mineral Solution, and we must report this to the FDA.
...
Amazon knows customers are buying this product and making MMS based on their product recommendations to consumers. By allowing their platform to be used to sell MMS, I feel Amazon is responsible for the poisoning and abuse of autistic children around the United States.
Shame on you, Amazon. Stop allowing sellers to market a product that the FDA warns people from using.
Amazon must be held accountable.
Please report Amazon for Unlawful Sales of Medical Products on the Internet.

Saturday, September 15, 2018

Important Forthcoming Book

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.

In 1994, Peter J. Hotez's nineteen-month-old daughter, Rachel, was diagnosed with autism. Dr. Hotez, a pediatrician-scientist who develops vaccines for neglected tropical diseases affecting the world's poorest people, became troubled by the decades-long rise of the influential anti-vaccine community and their inescapable narrative around childhood vaccines and autism. The alleged link between the two was first espoused in a fraudulent scientific paper, long since retracted, but the story shows no signs of letting up. As a result, we've seen deadly and disabling outbreaks of vaccine-preventable diseases around the country, and Texas, where Hotez lives, is at particular risk.
In Vaccines Did Not Cause Rachel's Autism, Hotez draws on his experiences as a pediatrician, vaccine scientist, and father of an autistic child. Outlining the arguments on both sides of the debate, he examines the science that refutes the concerns of the anti-vaccine movement, debunks current conspiracy theories alleging a cover-up by the CDC, and critiques the scientific community's failure to effectively communicate the facts about vaccines and autism to the general public, all while sharing his very personal story of raising a now-adult daughter with autism.
A uniquely authoritative account, this important book persuasively provides evidence for the genetic basis of autism and illustrates how the neurodevelopmental pathways of autism are under way before birth. Dr. Hotez reminds readers of the many victories of vaccines over disease while warning about the growing dangers of the anti-vaccine movement, especially in the United States and Europe. A former US Science Envoy for the Department of State, he also explains what's at stake if the movement continues to gain ground. Opening with a foreword by leading medical ethicist Arthur L. Caplan, this book is a must-read for parent groups, child advocates, teachers, health-care providers, government policymakers, health and science policy experts, and anyone caring for a family member or friend with autism.

Friday, September 14, 2018

A Community Responds to Bullying

In The Politics of Autism, I discuss challenges facing autistic adults and children One is bullying.

At KABC-TV in Los Angeles, Rob McMillan reports on a Colton, CA middle school student with autism.
"Every time when I start school, I've been bullied," Samuel Aragon, 13, said. "I just want the bullying to stop."

Aragon's mother, Desiree Reyes, said her son was particularly troubled by a recent incident, in which her son's Nike shoes were stolen. The black and white Air Jordans were allegedly stolen from his locker by a classmate.

"It's not fair for kids who don't speak up, or can't speak up, because their voices can't be heard," Reyes said.

Furious, Reyes posted a request for help on Facebook, alerting parents to what happened.

But what happened next was a surprise. The community raised $215 to buy her son a new pair of shoes. The effort was spearheaded by Colton resident Daniella Chavez.

Thursday, September 13, 2018

Autism, Education, and the European Union

In The Politics of Autism, I discuss the need for more study of the issue in other countries.

At PLOS One, Monika Roleska and colleagues have an article titled: "Autism and the  Right to Education in the EU: Policy Mapping and Scoping Review of the United Kingdom, France, Poland and Spain."  The abstract:
Introduction
Autistic people may have different educational needs that need to be met to allow them to develop their full potential. Education and disability policies remain within the competence of EU Member States, with current educational standards and provisions for autistic people implemented locally. This scoping review aims to map EU and national special education policies with the goal of scoping the level of fulfilment of the right to education of autistic people.
Methods
Four EU countries (United Kingdom, France, Poland and Spain) were included in this scoping review study. Governmental policies in the field of education, special education needs and disability law were included. Path dependency framework was used for data analysis; a net of inter-dependencies between international, EU and national policies was created.
Results and discussion
Each country created policies where the right to free education without discrimination is provided. Poland does not have an autism specific strategy, whereas the United Kingdom, France and Spain have policies specifically designed for autistic individuals. Within the United Kingdom, all countries created different autism plans, nevertheless all aim to reach the same goal—inclusive education for autistic children that leads to the development of their full potential.
Conclusion
Policy-making across Europe in the field of education has been changing through the years in favour of autistic people. Today their rights are noticed and considered, but there is still room for improvement. Results showed that approaches and policies vastly differ between countries, more Member States should be analysed in a similar manner to gain a broader and clearer view with a special focus on disability rights in Central and Eastern Europe
From the article:
This study provided vital information on the right to education of autistic people in the UK, France, Poland and Spain. The scope of this study only included four countries, therefore the results cannot be generalized and clear conclusion on the average level of the fulfilment of the right to education cannot be drawn. More countries should be analysed to get a better picture of the situation across the EU. Additionally, since this is the first in a series of studies that map SEN policy in the EU, the findings have not been able to be triangulated to ensure reliability. Furthermore, the initial pool of identified studies has not been examined by other authors, meaning the reliability of the screening process cannot be guaranteed. More research should also be conducted to establish whether strategies that are in place have an effect on autistic children, such as improved learning, skills and higher rates of participation in education. To the best of our knowledge, there are no previous studies that have examined whether education of autistic people in EU countries is directed to development of their talents, creativity and provides them with skills they need to successfully progress into employment. To this day, the research in the field of education and autism policies in the EU as well as globally is scarce and remains an important gap in autism research. It is for this reason that this study aimed to review existing information as well as attract interest to conduct more research in this field in the future.

Wednesday, September 12, 2018

ASD in Adult Psychiatric Inpatients

In The Politics of Autism, I discuss the uncertainty surrounding estimates of autism prevalence

At Clinical Practice & Epidemiology in Mental Health, Samuel Tromans and colleagues have an article titled "The Prevalence of Autism Spectrum Disorders in Adult Psychiatric Inpatients: A Systematic Review."  The abstract:
Background:
Whilst the prevalence of autism spectrum disorders in adults within the community setting is well-established, less is known about the prevalence among adults based within a psychiatric inpatient setting.
Objective:
To conduct a systematic literature review pertaining to the prevalence of autism spectrum disorders among the adult psychiatric inpatient population.
Method:
Eligibility criteria included: (a) investigation of the prevalence of autism spectrum disorders (b) adult psychiatric inpatient study population (c) published in English language. Electronic databases accessed included PubMed, Medline, CINAHL, PsycINFO and EMBASE. Additionally, the ancestry method was utilised for the references of eligible papers, as well as grey literature searches and consultation with experts in the field.
Results:
From the search, 4 studies were identified which satisfied the inclusion criteria, conducted in a variety of inpatient psychiatric settings, including secure forensic and intellectual disability units and a state psychiatric hospital. There were significant differences in methodological approaches, including the screening tests, diagnostic instruments and diagnostic criteria utilised. Autism spectrum disorder prevalence estimates varied considerably, from 2.4-9.9%.

Conclusion:
From the limited research data currently available, it appears that the prevalence of autism spectrum disorders is increased in inpatient psychiatric settings relative to the general population. There is a need for further high quality research in this patient group, to add to this limited evidence base, as well as in developing effective strategies to identify patients with a high likelihood of autism spectrum disorders within this setting.

Tuesday, September 11, 2018

Medicaid Reimbursement in Mississippi

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

In Tupelo, MS, Michaela Gibson Morris at The Daily Journal:
“We think there are 11,000 people with autism in Mississippi,” said Jim Moore, director of autism solutions at Canopy Children’s Solutions in Jackson and the chairman of the Mississippi Autism Board. “We have less than 60 providers.”

The research has shown that applied behavior analysis-based therapy can radically change the trajectory for a child with autism, Moore said. Especially if children with autism can receive intensive therapy early, they will need much less support in special education services in public schools and in social services as adults, saving the state money in the long run.

“The Centers for Disease Control and the American Medical Association not only consider it the best practice, but the gold standard,” Moore said.

The Medicaid reimbursement, which runs just over $30 an hour, doesn’t stretch to cover the costs, Moore said. States with similar demographics to Mississippi have Medicaid rates that are nearly double that level. As a result, there are currently only five autism centers accepting Mississippi Medicaid – the centers in Tupelo and West Point, Canopy in Jackson and two on the Gulf Coast.

“It’s extraordinarily hard not only to give that best treatment but keep the lights on,” Moore said.
Mississippi ranks dead last in community living standards for Americans with intellectual and developmental disabilities 

Monday, September 10, 2018

EMPOWER Care Act Advances

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

A Friday release from Rep. Brett Guthrie (R-KY):
Today the House Energy and Commerce Committee’s Health Subcommittee approved Congressman Brett Guthrie’s (KY-02) and Congresswoman Debbie Dingell’s (MI-12) Ensuring Medicaid Provides Opportunities for Widespread Equity, Resources (EMPOWER) and Care Act (H.R. 5306), which will help certain Medicaid participants receive long-term care in their homes or communities if they voluntarily choose to receive in-home care.

The EMPOWER Care Act reauthorizes the federal Money Follows the Person (MFP) demonstration program for one year. This program allows certain Medicaid users, such as seniors and individuals with disabilities, transition from a nursing home or institutional care back to their home. Since the MFP program was created over a decade ago, it has successfully helped over 88,000 individuals receive care in their own homes. The MFP program does not require people to leave institutional care; rather, it allows individuals who choose to go home to do so.

“There’s a reason we named our bill the EMPOWER Care Act – because we want to empower individuals with disabilities and seniors to choose the care that works best for them,” said Guthrie. “Kentucky Transitions, which administers the MFP program in the Commonwealth, has allowed hundreds of Kentuckians in nursing homes and other institutions to choose to go back to their own homes for care, and other states have had similar success. This program is a cost-effective way for people to receive the care that is best for them where they want to be. I was proud to introduce this bill with Congresswoman Dingell and I urge the full committee to approve this bill as soon as possible.”

“Our long-term care system is completely broken. Unfortunately I am witnessing its problems firsthand and am meeting people in crisis almost daily,” said Dingell. “The Money Follows the Person program has demonstrated it works, has strong bipartisan support, and saves taxpayers money by successfully transitioning thousands of people from institutions to a community setting where they can be with their loved ones. This is why I’m proud to author the EMPOWER Care Act with my friend and colleague Congressman Brett Guthrie to reauthorize the program. Advancing this bill through the Health Subcommittee is a critical step to getting it signed into law this year, and I’m looking forward to working with my colleagues on the Energy and Commerce Committee to ensure we get this done.”

Now that the Health Subcommittee has approved the EMPOWER Care Act, it must be marked up by the full Energy and Commerce Committee before heading to the House floor for a vote.

Sunday, September 9, 2018

Trump Using the R-Word

In The Politics of Autism, I discuss the issue's role in campaign politics.   In the 2016 campaign,   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.  
Trump is lying when he says that he never used the r-word. 

From a biography of Sacha Baron Cohen:
 Donald Trump also stopped his interview after Ali G pitched him an idea of manufacturing a glove to be worn while eating ice-cream cones. "I thought he was seriously retarded," Trump says. "It was a total con job.

Saturday, September 8, 2018

Data on Developmental Disabilities Around the World

Uncertainty is a major theme of The Politics of Autism.  How common is autism?  Do rates vary around the world?  Has prevalence changed over time.  There are now efforts to address such questions.

5 years in 195 countries and territories, 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016.  The summary:
Background
The Sustainable Development Goals (SDGs) mandate systematic monitoring of the health and wellbeing of all children to achieve optimal early childhood development. However, global epidemiological data on children with developmental disabilities are scarce. The Global Burden of Diseases, Injuries, and Risk Factors Study 2016 provides a comprehensive assessment of prevalence and years lived with disability (YLDs) for development disabilities among children younger than 5 years in 195 countries and territories from 1990 to 2016. Methods We estimated prevalence and YLDs for epilepsy, intellectual disability, hearing loss, vision loss, autism spectrum disorder, and attention deficit hyperactivity disorder. YLDs were estimated as the product of the prevalence estimate and the disability weight for each mutually exclusive disorder, corrected for comorbidity. We used DisMod-MR 2.1, a Bayesian meta-regression tool, on a pool of primary data derived from systematic reviews of the literature, health surveys, hospital and claims databases, cohort studies, and disease-specific registries.
Findings
Globally, 52·9 million (95% uncertainty interval [UI] 48·7–57·3; or 8·4% [7·7–9·1]) children younger than 5 years (54% males) had developmental disabilities in 2016 compared with 53·0 million (49·0–57·1; or 8·9% [8·2–9·5]) in 1990. About 95% of these children lived in low-income and middle-income countries. YLDs among these children increased from 3·8 million (95% UI 2·8–4·9) in 1990 to 3·9 million (2·9–5·2) in 2016. These disabilities accounted for 13·3% of the 29·3 million YLDs for all health conditions among children younger than 5 years in 2016. Vision loss was the most prevalent disability, followed by hearing loss, intellectual disability, and autism spectrum disorder. However, intellectual disability was the largest contributor to YLDs in both 1990 and 2016. Although the prevalence of developmental disabilities among children younger than 5 years decreased in all countries (except for North America) between 1990 and 2016, the number of children with developmental disabilities increased significantly in sub-Saharan Africa (71·3%) and in North Africa and the Middle East (7·6%). South Asia had the highest prevalence of children with developmental disabilities in 2016 and North America had the lowest.
Interpretation
The global burden of developmental disabilities has not significantly improved since 1990, suggesting inadequate global attention on the developmental potential of children who survived childhood as a result of child survival programmes, particularly in sub-Saharan Africa and south Asia. The SDGs provide a framework for policy and action to address the needs of children with or at risk of developmental disabilities, particularly in resource-poor countries

Friday, September 7, 2018

Unvaccinated Clusters Persist Despite CA Vax Law

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.

Laura Santhanam at PBS NewsHour:
A California law that aims to limit the number of people who can refuse vaccines has led to a slight improvement in kindergartners’ vaccination rate in recent years, according to a new study in Health Affairs. But the law was not as effective in private schools, and did little to break up localized clusters of children who opted out of vaccines.
It’s these local clusters of vaccinations that put a specific community or school at the greatest risk, according to the study, which linked large measles outbreaks across the United States to “declining population vaccination and to voluntary abstention from measles vaccine.”
“All disease transmission is local, just like politics,” said Saad Omer, a professor in global health and epidemiology at Emory University in Atlanta and one of the study authors. He added that national and state monitoring is not enough to effectively monitor infectious disease; more needs to be done on the local and county level.
...
In a now-retracted 1998 study published in the journal the Lancet, Dr. Andrew Wakefield claimed a false link between autism and the vaccine for measles, mumps and rubella. This study has been widely and repeatedly debunked. But some people continue to point to it as justification for avoiding immunization.
At Health Affairs, Malia Jones and colleagues have an article titled "Mandatory Health Care Provider Counseling For Parents Led To A Decline In Vaccine Exemptions In California." The abstract:
Receipt of childhood vaccinations in the US has been declining, and outbreaks of preventable infectious diseases have become more common. In response, in 2014 California implemented a policy change for exemptions from mandatory vaccines for school enrollment. Data on fifteen successive cohorts of kindergarteners enrolled in public and private schools between school years 2001–02 and 2015–16 were analyzed for changes in vaccination trends. The results show an increase in the prevalence and clustering of vaccine exemptions from 2001–02 through 2013–14, followed by a modest decline after implementation of a policy mandating health care provider counseling for vaccine exemption. Clustering of vaccine exemptions increased over the study period and was less responsive to the policy change than were exemption rates overall. Nor did the policy change uniformly reduce the clustering of at-risk students across counties. Trends in the use of conditional admission showed strong school-level clustering and remained relatively stable. The policy change was effective at reducing exemption rates but did not uniformly reduce clustering of exemptions. The results suggest the need to evaluate the causes of local-area clustering and to adopt a statewide policy that addresses clustering of vaccine exemptions within schools and counties.

Thursday, September 6, 2018

Opposition to Kavanaugh

In The Politics of Autism, I write about relevant court cases. 

More than 100 disability organizations have come out against the SCOTUS nomination of Judge Kavanaugh.

Senator Tammy Duckworth (D-IL) at Time:
Judge Kavanaugh has shown us what he believes about disabled Americans. In Tarlow v. D.C., he ruled that those with mental disabilities shouldn’t have the right to make medical decisions about their own bodies. In Baloch v. Kempthorne, he declared that businesses’ profits are more important than our health. And in Johnson v. Interstate Management Company, he decided that it’s okay for employers to discriminate against us, too.
ASAN has more detail:
Judge Kavanaugh has ruled that people with intellectual and/or developmental disabilities do not have any right to a say in our own health care. In Doe ex rel. Tarlow v. D.C., Judge Kavanaugh ruled against two women who had been forced to have abortions and one woman who was forced to have eye surgery. The D.C. agency that serves people with developmental disabilities had consented to all three procedures without discussing them with the women. Judge Kavanaugh wrote that because the women lacked “capacity” to make their own medical decisions independently, they had no right even to be consulted. This decision dramatically delayed the women’s ability to obtain compensation for the harm they suffered.
The United States has a long history of eugenic policies that hurt people with disabilities. People with disabilities, especially people with intellectual and developmental disabilities, have been forced to have sterilizations and abortions, and our children have been taken away from us. These policies often are based on the assumption that people with disabilities should not have a say in our own health care. Judge Kavanaugh’s decision in Doe is an echo of these devastating policies, and his nomination threatens our right to parent, make our own reproductive and other health care decisions, and control our own lives and bodies.

Wednesday, September 5, 2018

Trump and the R-Word

 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.
David Choi at Business Insider:
But audio recordings of previous interviews contradict Trump's claim that he never called anyone "mentally retarded." In an interview with shock jock Howard Stern from 2004, Trump claimed to recall a conversation with his golf instructor:

"I have a golf pro who's mentally retarded," Trump said, according to the Huffington Post. "I mean he's really not a smart guy."

In another interview with Stern in 2004, Trump decried a "negative" news report that scrutinized his financial dealings and threatened to "sue their ass off."

"I was criticized in one magazine, where the writer was retarded," Trump said at the time. "He said 'Donald Trump put up $7 million ... why isn't Donald Trump putting up more money?"

In 2016, the Daily Beast also reported that Trump implied actress Marlee Matlin, a former contestant on his show "The Celebrity Apprentice," was mentally handicapped because she was deaf.

One source told The Beast that Trump, who wrote "asinine" notes during tapings of the show, once wrote: "Marlee, is she retarded??"

"[Trump] would make fun of her voice," a person who worked on the show's set said to The Beast. "Like, to make it seem like she was mentally not there? [It] sounded like he got a real kick out of it. It was really upsetting."

Tuesday, September 4, 2018

Autism and Personal Experience

In The Politics of AutismI discuss the attitudes of public officialsMany who get involved in autism politics have had experience as parents or caregivers.

Antonio Planas at Newsday
An Islip councilman charged with reviving an advisory board for the disabled hopes to lean on his life experiences raising his autistic son to bring change.

"It's an area that I know a lot about and something I would like to share my knowledge, my abilities and my enthusiasm to try and do something positive," said James O'Connor, chairman of the Town of Islip Americans with Disabilities Advisory Board.

O'Connor, whose 22-year-old son was diagnosed with autism at age 2, was named as the advisory board's chairman on Aug. 21 by Supervisor Angie Carpenter. The councilman spoke recently from his town hall office, which proudly displays his son Matthew's artwork.

"The supervisor of the board, when I was first elected, understood I had a child with a disability," said O'Connor, who began his first term in January. "She asked me if I would be willing to take on the assignment. ... We can serve as a vigilant reminder to the town that there is a disabled community here in the town of Islip and we need to take their 

Monday, September 3, 2018

Postmodernism and the Antivax Movement

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.

Brett Bricker and Jacob Justice have an article at Western Journal of Communication titled "The Postmodern Medical Paradigm: A Case Study of Anti-MMR Vaccine Arguments."
This essay analyzes the arguments of the antivaccination movement, arguing that many analysts have misdiagnosed the root causes of vaccine skepticism. It is no longer productive for argumentation scholars to discount scientific skepticism as simply a problem of an ignorant public, religious zealots, or conservative ideologies, because antivaccine beliefs transcend ideology. The authors argue that simplistic accusations of blame on one political or cultural subgroup are inaccurate, and that the emergence of powerful antivaccine advocates points to the power of a conspiracy theory supported by anecdotes.
From the article:
The appeal of antivaccination discourse in its most powerful form is linked to two aspects of the postmodern medical paradigm. First, antivaccination advocates counter appeals to scientific consensus by relying upon anecdotes and highly emotional personal stories. These anecdotes typically involve the firsthand testimony of parents of autistic children who are convinced of the vaccination–autism link and use their own experiences to caution the audience against vaccination. Although educated and scientifically literate audiences may rightfully be skeptical of such anecdotal appeals, lay audiences often find them persuasive because of the sincerity of the featured parents and their seemingly common-sense arguments. Second, antivaccination arguments utilize conspiracy theory rhetoric to discount provaccination counterarguments, alleging a concerted effort by the media, government agencies, and pharmaceutical industry to conceal the truth about the vaccination–autism link. This argumentative technique casts doubt on the scientific consensus, by implying that the vaccination–autism link could be definitively proven were it not for widespread collusion to stifle the flow of information, creating an atmosphere of pervasive skepticism and uncertainty that is not conducive to rational, evidence-based persuasion. In what follows, we describe these two themes in greater detail and, illustrate their form and function within antivaccination discourse.
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The postmodern medical paradigm is at least partially to blame for skepticism of the scientific evidence supporting MMR vaccine efficacy and safety. Although postmodernism is an intentionally slippery term, when applied to medicine the postmodern medical paradigm has three characteristics:
  1. Hostility toward singular truths
  2. Aversion to scientific objectivity
  3. Decreased trust in expertise

Sunday, September 2, 2018

Looking for Rain Man

In The Politics of Autism, I discuss the employment of adults with autism and other disabilitiesMany posts have discussed programs to provide them with training and experience.

Simon M. Bury and colleagues have a letter in Autism titled  "If you’ve employed one person with
autism …: An individual difference approach to the autism advantage at work."  The abstract:
In this letter to the editor, we comment on the ‘autism advantage’ – the idea that superior skills associated with autism (e.g. attention to detail) present a talent in employment – an example of which is a recent discussion by Austin and Pisano. We welcome advocacy that raises awareness around the strengths and capabilities of people with autism, and also the need to reform human resource management processes that disadvantage them. However, we are concerned that, by highlighting certain stereotypes (e.g. the ‘talented nerd lacking social graces’), the heterogeneity of autism may be overlooked and support needs downplayed. Furthermore, not appreciating individual differences might result in a misalignment between work-profile and employment, pressure to outperform peers without autism and a failure to appreciate the diverse interests of people with autism. We argue that an individual differences approach will prove more sustainable for improving long-term employment outcomes.
From the letter:
We acknowledge that there are areas in which individuals with autism perform exceptionally and appreciate the importance of identifying their strengths and supporting them appropriately. However, it is also important to remind ourselves that not all  ndividuals with autism have superior skills, nor should they have to, to secure employment. The ‘autism advantage’ may prove a double-edged sword; while, it is beneficial in raising awareness, it also has the potential to place unreasonable expectations on average John (or Jane for that matter!). Supporting John, and the individuals who make up his composite, by supporting his uniqueness, including both his strengths and support needs, may prove to be the most sustainable approach to employment in the long term