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Friday, August 31, 2018

Partisanship and Participation Among Disabled People

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"

At the annual meeting of the American Political Science Association, Sierra Powell and April A. Johnson have a paper titled "Partisanship and Political Participation Among People with Disabilities."

The abstract:
Scholars have found that having a disability significantly decreases the likelihood one will vote. Here we explore several mechanisms that may be behind the low voter turnout of disabled Americans. Commensurate with the pattern of low turnout among people with disabilities, we ask whether people with disabilities also exhibit weak partisanship, moderate ideological preferences, and inconsistent patterns of vote choice. Analyzing data from the 2016 Cooperative Congressional Election Study and the 2012 and 2016 American National Election Studies, we conclude that having a disability is positively related to identifying as a Democrat, to identifying with liberal ideological orientations, and to Democratic vote choice. Curiously, we also find strong partisan attachments among people with physical disabilities, despite their history of low voting levels. We speculate about the differential effect of partisan attachment on voting behavior among those with and without disabilities. Practical strategies for greater incorporation of those with disabilities into the political process are considered.

Thursday, August 30, 2018

A Case for State Law on Autism ID Cards

The Politics of Autism includes an extensive discussion of policy initiatives in the statesNew York recently enacted ID legislation by Assemblyman Angelo Santabarbara. Speaking to Bethany Bump of the Albany Times-Union, he explains the need for state law:
[The] bill, sponsored by Santabarbara in the Assembly and Pamela Helming in the Senate, will create an optional, standardized identification card for individuals with a developmental disability. It could include information about the person's diagnosis, as well as an emergency contact number and address.
The goal, Santabarbara said, is to help vulnerable individuals convey important information to first responders in the event of an emergency or during an interaction with law enforcement.
He pointed to an incident in Arizona last year in which a police officer forcibly restrained an autistic 14-year-old who was playing with a piece of string in a public park, slammed him against a tree and pinned him to the ground, believing his repetitive behavior was a sign of drug use.
It wasn't. It was what's known in the autism community as self-stimulation or "stimming" — a common behavior involving repetitive movements or sounds that helps individuals with developmental disorders cope with their surroundings. The incident caused outrage after body camera footage was released.

"I said look, 'If we don't do something this is going to happen here and nobody wants that,'" Santabarbara said. "It would have been a different situation if, when the officer frisked the teen he found his ID card or had some training."
The ID bill, he said, will work in concert with an earlier bill he sponsored that created a statewide program to train police officers and first responders in recognizing the signs of autism, as well as how to respond to such individuals.
A number of local municipalities and organizations have offered unofficial versions of ID cards over the years, but they don't contain standardized language and may not be readily recognized by first responders, he said.

Wednesday, August 29, 2018

Yet Another Case of Blaming Autism for Planned Violence

In The Politics of Autism, I write:
There is no evidence linking autism to planned violence, but in recent years, mass shootings by young men have led commentators in the mainstream media and on the Internet to suggest such a connectionAfter the 2007 Virginia Tech massacre, for instance, news reports said that the shooter was on the spectrum. The speculation made little sense to anyone who understood autism. Whereas autistic people have language delays and deficits, the killer had learned English as a second language — and learned it well enough to major in the subject in college. Later on, it turned out that he had an entirely different problem, a social anxiety disorder. Adam Lanza, who committed the Sandy Hook massacre in 2012, may have had an Asperger’s diagnosis, but his father emphasized that his behavior stemmed from the psychiatric illnesses that he also had. Nevertheless, the media speculated about Lanza’s place on the spectrum, which worried autism parents. One mother of an autistic child wrote: “This is the first time I'm truly afraid for him. Afraid of what may happen to my son with autism at the hands of a stranger; a stranger who has chosen to buy into the media-fueled misinformation that individuals diagnosed with an Autism Spectrum Disorder are dangerous and capable of horrendous acts of terror and violence.”
LAURA INGRAHAM (HOST): All of them were on some SSRI drugs, anti-depressants, what should we think?

CAROLE LIEBERMAN: Well, it’s not really the anti-depressant's fault, but this isn’t a gun control problem either. It’s mainly a video game control problem and access to good mental health treatment problem.[…]

There is a pattern here with all of these school shooters. David Katz is just the latest one. And that is, first of all, there is some kind of mental illness. David Katz seems like he might be on the autism spectrum --

INGRAHAM: Look at him.

LIEBERMAN: He has some depression, certainly. Yes, if you look at -- yes, all you have to do is look at him.

INGRAHAM: Look at his eyes.

LIEBERMAN: If you look at his high school yearbook, yes, they’re so depressed.

INGRAHAM: His eyes, Adam Lanza’s eyes, something dead in their eyes, the eyes are the giveaway.

LIEBERMAN: Absolutely.

Tuesday, August 28, 2018

Cuomo Signs ID and Screening Bills

The Politics of Autism includes an extensive discussion of policy initiatives in the states.

Stephen Williams reports at the Daily Gazette [Schenectady, NY]:
Gov. Andrew M. Cuomo has signed into law two pieces of autism legislation sponsored by a local assemblyman.
On Friday, the governor signed a bill authorizing the state Office for People with Developmental Disabilities to create a standardized identification card, and another mandating that early screening for autism be a recommended part of routine early-childhood pediatric exams.
Both bills were sponsored by Assemblyman Angelo Santabarbara, D-Rotterdam, who has a 16-year-old son with autism.
"Hundreds and hundreds of families go through the exact same challenges that my family goes through," said Santabarbara, who is chairman of the Assembly Subcommittee on Autism Spectrum Disorders.
"It's a big win for my Autism Action Plan, and it's a big win for people with disabilities," he said. "This makes New York a leader in addressing the issues of people with autism."

Monday, August 27, 2018

Autistic Adults Living With Famiy Have Higher Unmet Service Need

Uncertainty is a major theme of The Politics of Autism.  In the concluding section, I write:
A key question in autism policy evaluation is simple to pose, hard to answer: How do autistic people benefit? How much better off are they as a result of government action? While there are studies of the short-term impact of various therapies, there is surprisingly little research about the long term, which is really what autistic people and their families care about. As we saw in chapter 4, few studies have focused on the educational attainment of autistic youths. For instance, we do not know much about what happens to them in high school, apart from the kinds of classes that they take. One study searched the autism literature from 1950 through 2011 and found just 13 rigorous peer reviewed studies evaluating psychosocial interventions for autistic adults. The effects of were largely positive, though the main finding of the review is that there is a need for further development and evaluation of treatments for adults.
With the increasing prevalence of adults with autism spectrum disorder (ASD), research examining the service experiences of this population is greatly needed. The current study investigated service use, unmet needs, and obstacles to service access for a large sample of adults with ASD. After accounting for various demographic factors known to impact service usage and needs, living situation was a significant predictor of service use, needs, and obstacles to services. Adults with ASD living with family reported less service use, higher unmet need, and more obstacles to accessing services. With more than half of this adult sample living with family, results have clear public policy implications to support the increasing population of adults with ASD living with aging caregivers.
From the article:
Compared to adults with ASD who lived with family members or lived independently, it may be unsurprising that adults with ASD who lived in supported residential settings, such as supervised housing or group homes, received more services given the array of services offered and delivered through their supported living facility. However, the size of the gap in service access, combined with the clear indication that more services are needed by adults with ASD living with family caregivers or living independently, is staggering. A surprisingly large percentage of families whose adult lived at home (60%) reported needing more services. This result remained even after controlling for a variety of adult and caregiver factors known to impact service usage and needs.

Saturday, August 25, 2018

The Ducks Stay

In The Politics of Autism, I discuss the  civil rights of people with autism and other disabilities.  Sometimes disputes involve service or support animals.

Lindsey Bever at WP:
Dylan Dyke’s best friends are ducks.
There Dylan is playing cards with “Bill.” There he is swimming with “Nibbles.” In another photo online, the 12-year-old with autism is seen talking to his two animals outside in Georgetown Township, Mich.
Earlier this year, Dylan even drew a picture of a duck and wrote an acrostic, defining his feathery friends as “Determined,” “Undefeatable,” “Caring” and “Kind."
"These ducks are his everything,” his mother, Jen Dyke, told NBC affiliate WOOD. “They’re his whole life.”
That’s why Dylan’s parents said it was so upsetting earlier this summer when neighbors began to complain about the animals, which Mark and Jen Dyke said provide emotional support for their son. It prompted officials in the township, near Grand Rapids, to order them to remove the ducks, saying they violated an ordinance against keeping farm animals in the neighborhood, according to the station.
But after an emotional fight, Dylan’s parents announced that members of the Georgetown Township Zoning Board of Appeals said Dylan could keep his friends.

Friday, August 24, 2018

Russians Have Long Spread Antivax Disinformatoin

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

Rhys Blakely at The Times of London:
Kremlin-sponsored social media accounts have promoted discredited theories about the MMR jab as part of an effort to sow doubt in the West over the safety of vaccines.
Russian government "trolls" voiced support for a film made by Andrew Wakefield, the doctor who was struck off after falsely claiming that the measles, mumps and rubella (MMR) vaccine caused autism.
...
Particular concern surrounds the so-called Wakefield cohort - young people whose parents failed to get them vaccinated as children after false claims by Mr Wakefield. The doctor was struck off by the General Medical Council in 2010 when it ruled that he had acted dishonestly in his 1998 study on MMR. Mr Wakefield then directed the film Vaxxed, which accuses the US government of covering up a link between autism and vaccines.
The messages in support of the film, which can be watched online for a fee, included a call to "let the people see #VAXXED and decide for themselves".
The tweets that promoted the Wakefield film were identified by Renée DiResta, an expert in online misinformation who has advised the US Congress. Some of the accounts that posted the messages have been suspended. A spokesman for Twitter said: "Twitter fights malicious automation strategically and at scale."
In another article, Blakely explains that the Russians have been engaging in this tactic for a long time.
In 1983 Soviet operatives planted a fabricated news story with a friendly Indian newspaper. It alleged that the Aids virus had been developed by the US government to target African-Americans and the US gay community.

A report by the Pell Centre for International Relations, a Washington think tank, documented how the lie spread, appearing in stories in 30 languages.

The distrust it gave rise to festered for years. In 2005 a survey found that nearly half of African-Americans believed that HIV was "man-made".

There is now substantial evidence that Russia has updated these methods to reflect our use of social media. Moscow does not appear to have a sincere aversion to vaccination: Russia claims to have an effective vaccination programme. The aim, rather, is to destabilise the West. Any issue that divides public opinion - from Brexit to genetically modified crops - appears to be fair game.

...
The stunt recalled Russia's efforts to meddle in the US election, which included paying a woman in a cage to dress up as Hillary Clinton in prison garb during a rally in Florida.

It also evoked the cynicism of the Russian military. In 2013 General Valery Gerasimov, chief of the general staff of Russia's armed forces, laid out what came to be seen as a blueprint for a new form of warfare, drawing on the media, hackers, psy-ops and fake news. He argued that even a "thriving state" could be brought to its knees in months if only the right combination of pressures were applied.

Thursday, August 23, 2018

Russian Trolls Spread Antivax Messages

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

A release from George Washington University:
Social media bots and Russian trolls promoted discord and spread false information about vaccines on Twitter, according to new research led by the George Washington University. Using tactics similar to those at work during the 2016 United States presidential election, these Twitter accounts entered into vaccine debates months before election season was underway. The study, "Weaponized Health Communication: Twitter Bots and Russian Trolls Amplify the Vaccine Debate" was published today in the American Journal of Public Health.

The team, which also includes researchers from the University of Maryland and Johns Hopkins University, examined thousands of tweets sent between July 2014 and September 2017. It discovered several accounts, now known to belong to the same Russian trolls who interfered in the U.S. election, as well as marketing and malware bots, tweeted about vaccines and skewed online health communications.

"The vast majority of Americans believe vaccines are safe and effective, but looking at Twitter gives the impression that there is a lot of debate. It turns out that many anti-vaccine tweets come from accounts whose provenance is unclear. These might be bots, human users or 'cyborgs' -- hacked accounts that are sometimes taken over by bots. Although it's impossible to know exactly how many tweets were generated by bots and trolls, our findings suggest that a significant portion of the online discourse about vaccines may be generated by malicious actors with a range of hidden agendas," David Broniatowski, an assistant professor in GW's School of Engineering and Applied Science, said.
 Ben Popken and Maggie Fox  at NBC:
An NBC News analysis of over a million tweets sent by identified Russian trolls published by the data journalism website FiveThirtyEight and Clemson University researchers found over 500 examples of tweets that mention vaccines, often spreading misinformation and discredited theories.
“The Vaccine Hoax is Over — Secret Documents Reveal Shocking Truth,” wrote Russian troll _NICKLUNA_ in February 2017. “Autism Rates in California Have Skyrocketed Following Mandatory Vaccination Bill,” tweeted Amelie Baldwin, a prolific Russian troll, in December of 2016.
Jessica Glenza at The Guardian:
“To me it’s actually impressive how well-organized and sophisticated the anti-vax movement has become,” said Dr Peter Hotez, the director of the Texas children’s hospital center for vaccine development at Baylor College of Medicine, and the father of an autistic child. Hotez, who maintains an active Twitter presence, said he struggled to identify whether Twitter accounts were human or bots.
“There are clearly some well-known anti-vax activists that I know to look out for and I know to block or to mute, but that’s a minority,” said Hotez. “A lot of it just seems to come out of nowhere, and I’m always surprised by that.” 
One of the most striking findings, Broniatowski said, was an apparent attempt by Russian trolls to Astroturf a vaccine debate using the hashtag #VaccinateUS. Accounts identified as controlled by the Internet Research Agency, a troll farm backed by the Russian government, were almost exclusively responsible for content emerging under #VaccinateUS.
Some of the Russian trolls even specifically used a hashtag associated with Andrew Wakefield, the discredited former physician who published fraudulent papers linking vaccines with autism, such as #Vaxxed and #CDCWhistleblower.

Autistic Person Pushes Back on Anti-Vaxxers

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

Karl Knights at The Guardian:
I’m autistic, and I was diagnosed 10 years ago, in 2008. At 12 years old, I had no way of knowing that anti-vaccination was still a live topic around autism. Luckily my parents didn’t engage with such a conversation. They were concerned about my needs, my access to education and employment. But many autistic children and adults were caught up in this bizarre and often harrowing episode – the discussion was too often centred on how to avoid having an autistic child, or what “mistakes” were made that caused the autism, rather than embracing the possibilities of neurodiversity.
The culture of fear that Wakefield aided and abetted has been taken up by far-right political movements, which capitalise on the fears that surround autism. In their narrative, autism is devastating and to be avoided at all costs. Anti-vaxxers point to rising rates as evidence of their outlandish theories. (In fact, as many studies and analyses have shown, the rates have risen because our diagnostic criteria have become more inclusive and more accurate.)
“For autistic people, the timing of Wakefield’s bogus study could not have been worse,” Steve Silberman, author of NeuroTribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently, tells me. “Just at the historical moment when the true prevalence of autism was coming into view because of more public awareness, better screening methods, and so on, Wakefield came along to blame the rising numbers on vaccines. That had a devastating effect on autistic people – who now had to bear the stigma of allegedly being “vaccine-injured” on top of having autism – on parents, and on the direction of research. Instead of arguing about whether or not vaccines cause autism for a decade, society should have been investigating ways of improving the quality of life for autistic people and for their families.”

Wednesday, August 22, 2018

International Opinion on Vaccines and Autism

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


Bobby Duffy at The Conversation:
Have these unfounded fears stuck with the public around the world? Our first ever multi-country study, in 38 nations, on vaccine misperceptions suggests they have. Around one in every five people believe that “some vaccines cause autism in healthy children”, and 38% are unsure whether it is true or not.
The proportions positively believing it is true ranged from an incredible 44% in India, down to 8% in Spain.
But there are majorities in many countries who think it’s true or are unsure: in France it’s 65%, in Britain it’s 55%, in Italy it’s 52%. And even in countries where it’s not quite a majority who think it’s true or are unsure, it’s often only just below: in Sweden it’s 49% and in the US and Germany it’s 48%.

Tuesday, August 21, 2018

A Five Billion Dollar Business

 The Politics of Autism includes an extensive discussion of autism service providers.

From Market Research Future:

  • The global autism disorder & treatment market was USD 5,143.6 million in 2016
  • The pervasive developmental disorder is the largest segment, by type which is projected to grow at a CAGR [compound annual growth rate ] of 4.73% during the forecast period from 2017–2023.
  • ABA is the largest segment, by treatment type in global and expected to grow at a rate of CAGR 4.82% during the forecast period
  • The anti-psychotic accounted for the largest market share in global autism disorder & treatment market by drugs and is expected grow with the CAGR of 3.95% for the forecast period.

Monday, August 20, 2018

Measles Case Soar in Europe

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

Over 41 000 children and adults in the WHO European Region have been infected with measles in the first 6 months of 2018. The total number for this period far exceeds the 12-month totals reported for every other year this decade. So far, the highest annual total for measles cases between 2010 and 2017 was 23 927 for 2017, and the lowest was 5273 for 2016. Monthly country reports also indicate that at least 37 people have died due to measles so far this year.
“Following the decade’s lowest number of cases in 2016, we are seeing a dramatic increase in infections and extended outbreaks,” says Dr Zsuzsanna Jakab, WHO Regional Director for Europe. “We call on all countries to immediately implement broad, context-appropriate measures to stop further spread of this disease. Good health for all starts with immunization, and as long as this disease is not eliminated we are failing to live up to our Sustainable Development Goal commitments.”
Seven countries in the Region have seen over 1000 infections in children and adults this year (France, Georgia, Greece, Italy, the Russian Federation, Serbia and Ukraine). Ukraine has been the hardest hit, with over 23 000 people affected; this accounts for over half of the regional total. Measles-related deaths have been reported in all of these countries, with Serbia reporting the highest number of 14.

Rory Smith at CNN:
And where anti-vaccine sentiment has taken root -- such as in Italy -- measles is generally the first disease to manifest given its contagiousness, according to Heidi Larson, of the London School of Hygiene and Tropical Medicine.
Italy's anti-establishment government recently passed a new amendment that suspends a law requiring parents to provide proof that their children received a series of 10 vaccines -- including the MMR (measles, mumps, and rubella) vaccine -- when enrolling them in nurseries and preschools.
"Now, children who are not vaccinated will endanger other children at school who are too small for vaccines or cannot be vaccinated because they suffer from immunosuppressive diseases," said Dr. Roberto Burioni, a professor of microbiology and virology at San Raffaele University in Milan.
France and Romania, along with Italy, are among European countries with the highest anti-vaccine sentiment, where around 20% of the population believes vaccines are unsafe.
The infamous Wakefield study pubished in 1998 stated that the MMR vaccine caused autism in children who received the vaccine. The results of the study turned out to be untrue and Andrew Wakefield, one of the authors of the study, had his medical license revoked.
Despite the medical fraud, the myth persists, and many vaccine skeptics still believe their children will develop autism if they are immunized.

Sunday, August 19, 2018

Inequities in Age of Treatment Receipt

In The Politics of Autism, I write about the experiences of different economicethnic and racial groups


From the article:
This study, which is the first to examine inequity in age of treatment receipt among a nationally representative sample of children with ASD, demonstrates inequitable access to treatment. Specifically, we detected relationships between age of treatment receipt and two predisposing social characteristics, or race-ethnicity and perceived neighborhood cohesion. It is concerning that compared to White children, the odds of entering treatment at 3 years and ⩾4 years were much greater for non-Hispanic Black children. This finding aligns with consistent evidence that Black children with ASD are diagnosed later and are initially misdiagnosed (Daniels and Mandell, 2013).
...
After controlling for child race-ethnicity and covariates, children whose parents perceived their neighborhood to be cohesive began treatment earlier than children whose parents did not. Byrnes and Miller (2012) reported that the positive relationship between perceived neighborhood cohesion and effective parenting behaviors is mediated through social support. Thus, parents who perceive neighborhood cohesion might perceive greater social support from and more frequently communicate with neighbors and more often interact with other parents and young children. In turn, these parents might be more likely to compare and discuss their child’s development, including available community resources that promote development. To the contrary, parents who do not perceive  neighborhood cohesion might not receive feedback about their child’s development until preschool or later.

Saturday, August 18, 2018

One in Four Adults Has a Disability

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

From CDC:
One in 4 U.S. adults – 61 million Americans – have a disability that impacts major life activities, according to a report in CDC’s Morbidity and Mortality Weekly Report.
The most common disability type, mobility, affects 1 in 7 adults. With age, disability becomes more common, affecting about 2 in 5 adults age 65 and older.
“At some point in their lives, most people will either have a disability or know someone who has a one,” said Coleen Boyle, Ph.D., director of CDC’s National Center on Birth Defects and Developmental Disabilities. “Learning more about people with disabilities in the United States can help us better understand and meet their health needs.”
Six types of disability measured
Using data from the 2016 Behavioral Risk Factor Surveillance System (BRFSS), this is the first CDC report of the percentage of adults across six disability types:

  • Mobility (serious difficulty walking or climbing stairs)
  • Cognition (serious difficulty concentrating, remembering, or making decisions)
  • Hearing (serious difficulty hearing)
  • Vision (serious difficulty seeing)
  • Independent living (difficulty doing errands alone)
  • Self-care (difficulty dressing or bathing)

These data show that disability is more common among women, non-Hispanic American Indians/Alaska Natives, adults with lower income, and adults living in the South Census region of the United States. The report also shows that:

  • After mobility disability, the next most common disability type is cognition, followed by independent living, hearing, vision, and self-care.
  • The percentage of adults with disability increased as income decreased. In fact, mobility disability is nearly five times as common among middle-aged (45- to 64-year old) adults living below the poverty level compared to those whose income is twice the poverty level.
  • It is more common for adults 65 years and older with disabilities to have health insurance coverage, a primary doctor, and receive a routine health checkup during the previous 12 months, compared to middle-aged and younger adults with disabilities.
  • Disability-specific differences in the ability to access health care are common, particularly among adults 18- to 44-years old and middle-aged adults. Generally, adults with vision disability report the least access to health care, while adults with self-care disability report the most access to care.

“People with disabilities will benefit from care coordination and better access to health care and the health services they need, so that they adopt healthy behaviors and have better health,” said Georgina Peacock, M.D., M.P.H., Director of CDC’s Division of Human Development and Disability. “Research showing how many people have a disability and differences in their access to health care can guide efforts by health care providers and public health practitioners to improve access to care for people with disabilities.”
CDC is committed to protecting the health and well-being of people with disabilities throughout their lives. Through its State Disability and Health Programs and national collaborations, CDC will continue to work to lower health differences faced by people with disabilities. To advance this goal, CDC provides information and resources for public health practitioners, doctors, and those who care for people with disabilities.
For more information about CDC’s work to support inclusive settings for people with disabilities, go to http://www.cdc.gov/disabilities.

Friday, August 17, 2018

Measles Redux

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

From CDC:
From January 1 to July 14, 2018, 107 people from 21 states (Arkansas, California, Connecticut, Florida, Illinois, Indiana, Kansas, Louisiana, Maryland, Michigan, Missouri, Nevada, New Jersey, New York, North Carolina, Oklahoma, Oregon, Pennsylvania, Tennessee, Texas, and Washington) and the District of Colombia were reported to have measles.
In 2017, 118 people from 15 states and the District of Columbia were reported to have measles. In 2016, 86 people from 19 states were reported to have measles. In 2015, 188 people from 24 states and the District of Columbia were reported to have measles. In 2014, the United States experienced a record number of measles cases, with 667 cases from 27 states reported to CDC’s National Center for Immunization and Respiratory Diseases (NCIRD); this is the greatest number of cases since measles elimination was documented in the U.S. in 2000.
  • The majority of people who got measles were unvaccinated.
  • Measles is still common in many parts of the world including some countries in Europe, Asia, the Pacific, and Africa.
  • Travelers with measles continue to bring the disease into the U.S.
  • Measles can spread when it reaches a community in the U.S. where groups of people are unvaccinated.

Thursday, August 16, 2018

DDT and Autism

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


Sara Reardon at Nature:
Mothers with high levels of the pesticide DDT in their blood during pregnancy are more likely to bear children who develop autism, according to a study of blood samples from more than one million pregnant women in Finland.

The World Health Organization estimates that globally, one in 160 children has autism. Any case of autism is likely due to a number of factors, including genetics and other environmental exposures.

Although the authors stress that the findings do not prove that autism is caused by DDT — whose use has been banned in many countries for decades over concerns about its effects on wildlife— it is the first such association using a direct measure of exposure to the pesticide. Researchers who investigate links between environment and disease say that further studies are needed to determine the mechanism, if any, by which DDT exposure could trigger autism.

The study, published on 16 August in the American Journal of Psychiatry, also examined mothers’ exposure to another set of chemicals known as polychlorinated biphenyls (PCBs), and found no association between these substances and autism. That finding deepens questions about whether or how DDT might be linked to autism.

Wednesday, August 15, 2018

Texas Must Spend More for Special Ed


Alejandra Matos at The Houston Chronicle reports that Texas must spend billions more on special education.
A 2016 Houston Chronicle investigation and a subsequent federal auditfound that the Texas Education Agency illegally set up an 8.5 percent benchmark, or de-facto cap, on the number of students receiving special education services. The cap was in place for more than a decade, and was well below the national average of 13 percent.

In eliminating that cap, state officials estimate that it will cost the state billions of dollars to provide special education services to an additional 189,000 students who need them.
The state legislature eliminated caps on special education services last year, and the federal government is requiring school districts to evaluate special needs students and offer compensatory services. As more students are identified, the state will have to pay for those resources. TEA officials told a group of lawmakers Thursday that it estimates the state will need an additional $682 million for special education services in fiscal year 2019, an additional $1 billion in 2020 and $1.55 billion in 2021. That's more than $3.2 billion in the next three years.

Tuesday, August 14, 2018

HEADS UP

The Politics of Autism discusses health care, and explains that autism services can be complicated, creating difficulties for autistic people and their families. 

Last week, to commemorate the 28th anniversary of the passage of the Americans with Disabilities Act (ADA), Congressman Seth Moulton (D-MA), and Congressman Gregg Harper (R-MS), introduced the Healthcare Extension and Accessibility for Developmentally Disabled and Underserved Population (HEADs Up) Act of 2018.[HR 6611] The HEADs Up Act would designate people with Intellectual and Developmental Disabilities (I/DD) as a Medically Underserved Population (MUP) under the Health Services and Resources Administration (HRSA), opening up access to much needed primary care and specialist services, incentivizing new research, and authorizing more favorable reimbursement rates for providers who treat this population.

“The best way to celebrate the 28th anniversary of the signing of the Americans with Disabilities Act and the 50th Anniversary of the Special Olympics is to take the next step towards ensuring that those living with intellectual and developmental disabilities can live full and happy lives,” said Moulton. “Every person with intellectual and developmental disabilities should be fully integrated into our communities. But right now, we’re failing to give them basic healthcare. This needs to stop. We have the opportunity to create a turning point in the way we care for some of the most medically underserved people in our country. Access to healthcare is a human right, and we have an obligation to make sure that those most in need are getting the care they deserve.”
The “Medically Underserved” designation was created with the passage of the Health Centers Consolidation Act of 1996. Despite years of advocacy and ample evidence that people with I/DD qualify as a MUP, they still have not been designated as one. The designation as a special medically underserved population would open up over 25 government programs within the HRSA and other federal agencies for participation by the I/DD population. These programs include:
  • Federal funding for health centers and public health infrastructure such as Federally Qualified Health Centers (FQHC),
  • Eligibility to apply for federal funding to develop and operate Community Health Centers,
  • Access to loan repayment and training programs in HRSA’s Workforce Development and Training Programs including the national Health Service Corps Scholarships,
  • Incentives for physicians to treat this population in the form of higher CMS reimbursement rates for physician services delivered in Health Professional Shortage Areas, a designation closely related to MUP,
  • Preference given to research at federal agencies, including the NIH, that studies medically underserved population.
“Research shows that individuals with Intellectual and Developmental Disabilities (IDD) experience health disparities, as healthcare providers often do not receive the necessary training to provide proper care to the IDD community,” said Harper. “Increasing opportunities and improving the quality of life for IDD individuals has been a priority for me during my service in Congress. I am pleased to work with Representative Moulton on the HEADs Up Act of 2018 to continue this important conversation.”

The following groups have endorsed the HEADs Up Act:
  • American Network of Community Options and Resources (ANCOR)
  • National Council on Disability
  • ARC
  • Autism Society
  • The National Association of State Directors of Developmental Disabilities Services (NASDDDS)
  • Special Olympics
  • National Down Syndrome Congress
  • MENTOR
“Special Olympics strongly supports legislation, like the HEADs UP Act, that advances the rights, participation and integration of people with intellectual disabilities in communities across America,” said Dr. Timothy P. Shriver Ph.D., Chairman, Special Olympics International. “We thank Congressman Moulton and Congressman Gregg Harper for their championship of this bill. Special Olympics looks forward to continuing its work with Congress to end the stigma, stereotypes, isolation and discrimination that Americans with intellectual disabilities face around access to sport, health and education. The HEADs UP Act will go a long way towards ending well documented health disparities for people with Intellectual and Developmental Disabilities by appropriately designating those fellow Americans as a Medically Underserved Population as a result of so many lacking in the health care they desperately need and deserve.”
“Increasing access to dental health services for people with intellectual and developmental disabilities is an incredibly important issue because data overwhelmingly shows the connection between dental health and overall health outcomes, but the issue has flown under the radar for far too long,” said Barbara Merrill, CEO of ANCOR. “We are so grateful that Representative Moulton has asserted himself as a champion for this issue because we know that designating people with I/DD as a medically underserved population will help us make great strides in connecting people with the dental care they need and deserve.”

Monday, August 13, 2018

No Link Between Tdap and Autism

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

A study of women who received a Tdap vaccination during pregnancy found no increase in risk that their children would later be diagnosed with autism spectrum disorder. The study, “Prenatal Tetanus,Diphtheria, Acellular Pertussis Vaccination and Autism Spectrum Disorder,” will be published in the September 2018 issue of Pediatrics (published online Aug. 13). Researchers reviewed the records of 81,993 pairs of diverse pregnant women and their children who were born between Jan. 1, 2011, and Dec. 31, 2014, at Kaiser Permanente Southern California hospitals. Following up with the mother-child pairs, they identified children who had been diagnosed with autism spectrum disorder after age 1 through June 30, 2017. The incidence rate of autism spectrum disorder was 3.78 per 1,000 people in the Tdap-vaccinated group. The rate of autism spectrum disorder was 4.05 per 1,000 in the unvaccinated group. The Tdap vaccine has been shown in prior research as effective in protecting young infants from pertussis, which has risen in incidence in the past decade. Evidence showed that antibodies are passed along to newborns and that the vaccine was 91.4 percent effective in providing some immunity until newborns reached 2 months of age.

Sunday, August 12, 2018

ABLE Age Adjustment Act

The Politics of Autism includes a discussion of the ABLE Act.

From the Autism Society:
The Autism Society and other national disability groups used the ADA anniversary to spur action on the ABLE Age Adjustment Act. In 2014 Congress passed the ABLE Act, which authorized the creation of savings accounts for people to save money for disability-related expenses without jeopardizing their eligibility for public benefits like Supplemental Security Income (SSI) and Medicaid. These accounts are important because people with disabilities can lose their eligibility for public benefits if they accumulated more than $2,000 in assets if they do not have access to an ABLE account. While the ABLE Act performs a valuable service, only those that acquire a disability before age 26 are eligible. The ABLE Age Adjustment Act increases the age cut-off to 46 years of age which would allow an additional 6 million people with disabilities. Autism Society affiliates are encouraged to reach out to their Members of Congress to urge them to co-sponsor this bill. A sample letter is provided in the ASA Action Center.

Saturday, August 11, 2018

The ADA Is 28

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

The Autism Society recently observed the 28th anniversary of the Americans with Disabilities Act (ADA)
The Autism Society published a statement celebrating the civil rights law, acknowledging the history and evolution of disability rights, and pledging to continue its mission to support people with autism and other disabilities and their families. This mission includes protecting the ADA and other civil rights laws that promote the vision of full inclusion of people with autism and other disabilities. The US Department of Health and Human Services (HHS) Administration for Community Living (ACL) also published a statement using the ADA anniversary to reaffirm its commitment to the “fundamental principle that older adults and people of all ages with disabilities should be able to live where they choose, with the people they choose and with the ability to participate fully in their communities
Two years ago, David A. Graham wrote at The Atlantic:
Disability politics used to be bipartisan. The Americans with Disabilities Act was primarily authored by Senator Tom Harkin, an Iowa Democrat. It passed the Senate and House overwhelmingly—91-6 and 377–28, respectively, and was signed into law by President George H.W. Bush in 1990. When he signed the law, Bush said:
Now I sign legislation which takes a sledgehammer to another wall, one which has for too many generations separated Americans with disabilities from the freedom they could glimpse, but not grasp. Once again, we rejoice as this barrier falls for claiming together we will not accept, we will not excuse, we will not tolerate discrimination in America…. To those Members of the House of Representatives with us here today, Democrats and Republicans as well, I salute you. And on your behalf, as well as the behalf of this entire country, I now lift my pen to sign this Americans with Disabilities Act and say: Let the shameful wall of exclusion finally come tumbling down.
Eighteen years later, Bush’s son George W. Bush signed some expansions of the ADA into law.

Since then, however, things have sputtered. In 2012, the Senate failed to ratify a United Nations treaty called the Convention on the Rights of Persons With Disabilities. Democrats supported the treaty, but Republicans were split. On the pro side were George H.W. Bush and Bob Dole, the former Senate GOP leader and presidential candidate who was injured during World War II. On the con side were a bloc who warned on extremely dubious grounds that the treaty would allow the UN to meddle in U.S. courts. In the end, the treaty failed, despite Dole himself appearing on the Senate floor to lobby. It needed two-thirds of votes to pass, but was only able to garner 61

Friday, August 10, 2018

Project Lifesaver

The Politics of Autism discusses the problem of wandering, which has been the topic of legislation.

An autistic teen from Waterford, New York, went missing this week and apparently drowned in the Mohawk River.

Bethany Bump at The Times-Union in Albany:
The search for both Blaauboer and Williams could have been over in hours, if not minutes, if the two had been enrolled in the Project Lifesaver program, officials have suggested.
Developed in 1999 as a way to bring peace of mind to caregivers of individuals with cognitive disorders such as autism, Alzheimer's and other dementias, those enrolled in the program wear a small transmitter on the wrist or ankle that emits an individualized frequency signal. If they go missing, the caregiver notifies local law enforcement, who can use the technology to pinpoint their location.
There are similar technologies with other names, but Project Lifesaver was one of the first and is used by the majority of county sheriff's offices around the region.

"Thinking about my 16-year-old son Michael who lives with autism, I know how children with autism can tend to wander," said Assemblyman Angelo Santabarbara, who helped bring the program to his home county of Schenectady in 2015.
"It's critical that we invest in this life-saving technology to protect our most vulnerable citizens," he said.
Santabarbara introduced a bill in April to expand the technology statewide to those who need it. In addition to the technology, law enforcement agencies need training in how to use the program, he said.