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Monday, December 31, 2018

Texas Schools Disproportionately Punish Special Ed Students

In The Politics of Autism, I discuss the educational and civil rights of people with autism and other disabilities.   As previous posts have noted, students with autism and other disabilities face problems with school discipline.

Shelby Webb at The Houston Chronicle:
Students who receive special education services in Texas are more likely to be given some of the harshest punishments in schools, according to an analysis of Texas Education Agency data.
Since the 2013-2014 school year, special education students statewide were sent to alternative education programs run by local juvenile justice systems at the highest rates of any student sub-group, and the second most likely to be sent to disciplinary alternative education programs, which are not directly affiliated with juvenile courts.
Across three other types of discipline tracked by the TEA — including expulsions, out-of-school suspensions and in-school suspensions — special education students across Texas were punished at the second highest rates of any student subgroup, behind only African-American students.

Sunday, December 30, 2018

Detention Alternatives for Autistic Youth (DAAY) Court

In The Politics of Autism, I discuss interactions between justice system and autistic people.

In June, David Ferrara reported at the Las Vegas Review-Journal
Juvenile Court Hearing Master Soonhee “Sunny” Bailey noticed a growing number of youths entering the justice system who showed signs of autism, and many were not receiving the treatment they required.

“There’s a huge need to service these kids,” said Bailey, who recognized the symptoms, having raised an autistic daughter. “And we haven’t been able to address it until recently.”

This year, she and Family Court Judge William Voy launched Detention Alternatives for Autistic Youth Court, or DAAY Court, a specialty court geared toward helping troubled youngsters with the condition.
Jennifer Solis at The Nevada Current:
But the court is also a reflection of a system that has failed to intervene much earlier in the lives of young autistic people, when such intervention can make all the difference in behavior patterns as children get older.

Clark County District Court Judge William Voy, who runs the court’s Family Division, which includes the DAAY Court, said once a child lands in court it often takes up to six months or longer to connect them to service providers that offer effective therapies.
 Young offenders average about three and a half citations before they get a formal petition that lands them in DAAY court, said Voy. Most cases that make their way through the court are battery of various levels, often domestic violence charges or assault of a school employee or healthcare provider they encounter. The district attorney has the discretion to choose to file petitions against these minors.
 “It’s just really a physical representation of the school-to-prison pipeline because for children with autism who don’t get these services — the natural side effect of that is aggression,” said Bailey Bortolin, a policy director for Nevada Coalition of Legal Service Providers, who works on behalf of autistic children in the legal system. “It’s very common for an autistic child to bite someone because they’re not learning through services how to correctly express themselves.”

Currently, only about 290 children in the state are receiving ABA services through Medicaid. These numbers indicate a 36 percent increase in access to care since June 2017, but falls far short of the budgeted caseload of 1,879. Additionally, only some $1 million of the appropriated $42 million was spent by Medicaid through March 2017.

Advocates and lawmakers say a large part of the discrepancy is because of a workforce shortage of ABA providers. Still for many families, even finding an ABA provider that takes Medicaid can be difficult and frustrating.

Saturday, December 29, 2018

Hiring People with Disabilities

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

Ted Kennedy, Jr, a state senator in Connecticut, writes at The New York Times:
A recent study has shown, for the first time, that companies that championed people with disabilities actually outperformed others — driving profitability and shareholder returns. Revenues were 28 percent higher, net income 200 percent higher, and profit margins 30 percent higher. Companies that improved internal practices for disability inclusion were also four times more likely to see higher total shareholder returns.
These findings, presented in a report from Accenture, in partnership with Disability: IN and the American Association of People with Disabilities, give companies a new reason to hire people with disabilities. The results are based on an analysis of the financial performance of 140 companies that averaged annual revenues of $43 billion and participated in the Disability Equality Index, an annual benchmarking tool that objectively rates company disability policies and practices.
What exactly are these exemplary companies doing?
Well, Bank of America brought together 300 people with intellectual disabilities to create a support services team to manage fulfillment services and external client engagement. Microsoft built a successful disability hiring program specifically for people on the autism spectrum. The program, designed to attract talent, is a multiday, hands-on academy that gives candidates an opportunity to meet hiring managers and learn about the company as an employer of choice. And CVS Health refocused its training programs to capitalize on characteristics — creativity, problem-solving ability and loyalty — that people with disabilities often demonstrate.

Friday, December 28, 2018

Another Vacuum: Scientific Engagement

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

Dr. Peter Hotez in The Houston Chronicle:
According to the Pew Research Center in a study conducted in association with the American Association for the Advancement of Science (AAAS), as a profession, American scientists are not performing well in terms of public engagement. Their study found that while scientists support active engagement in public policy discussion in overwhelming numbers, the scientists themselves are not out there in the public eye.
I believe that the precipitous rise of the anti-vaccine movement has been enabled by a vacuum in public engagement by scientists. We’re too focused on our grants and papers and have not allowed ourselves to devote time to public lectures, social media, blogs, print and electronic interviews, and other forms of public outreach. Similar reasons may also underlie the collapse of public support for aggressively addressing climate change and other timely scientific issues.

Thursday, December 27, 2018

Autism and Medical Marijuana

In The Politics of Autism, I write:
The conventional wisdom is that any kind of treatment is likely to be less effective as the child gets older, so parents of autistic children usually believe that they are working against the clock. They will not be satisfied with the ambiguities surrounding ABA, nor will they want to wait for some future research finding that might slightly increase its effectiveness. They want results now. Because there are no scientifically-validated drugs for the core symptoms of autism, they look outside the boundaries of mainstream medicine and FDA approval. Studies have found that anywhere from 28 to 54 percent of autistic children receive “complementary and alternative medicine” (CAM), and these numbers probably understate CAM usage
These approaches sometimes include marijuana.

Lynn Arditi at NPR:
Rhode Island is one of a small but growing number of states that allow medical marijuana for treating severe forms of autism.
The decision is raising hopes for some parents of autistic children. But there's scant scientific evidence about the benefits — and risks — of marijuana use in these children.
"The research basis for a lot of the hopes for using medical marijuana for autism - it's really minimal," says David G. Amaral, a psychologist and research director of the M.I.N.D. Institute at University of California, Davis. (M.I.N.D. stands for Medical Investigation of Neurodevelopmental Disorders.) "I mean there's very meager clinical evidence for effectiveness."

Meager evidence because there have been no large clinical trials to determine whether marijuana or its compounds are effective — or safe — in treating children with autism.
"Unless there's a clinical trial done in the right way and showing the safety, No. 1, of the drug," Amaral says, "and then the benefit of it ... it may be that families are wasting their time — and maybe exposing their family members to a potentially dangerous situation."
That's not to say that marijuana doesn't hold promise for autism treatment. In fact, the first large-scale clinical trial in the U.S. to test the idea is just getting underway at Montefiore Medical Center in New York.
The trial, funded with a $1.3 million grant from the U.S. Department of Defense, will examine the effectiveness of a cannabis-based compound known as CBDV (which stands for cannabidivarin) on irritability and repetitive behaviors in children with autism spectrum disorders.
The study's lead researcher, Dr. Eric Hollander, directs the Autism and Obsessive Compulsive Spectrum Program at Montefiore Medical Center and the Albert Einstein College of Medicine. The trial is expected to enroll about 100 patients and be completed in 2021.

Tuesday, December 25, 2018

Again: Vaccines Do Not Cause Autism

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

Autism mom Katie Joy writes at Patheos:
(If you have wondered if there is still a link between vaccines and autism, you can search the internet and find articles on both sides. The truth is the major publications, government and autism support networks all believe Autism and Vaccines do not correlate. Here are a few Articles for your pleasure:

Vaccines Do Not Cause Autism – CDC
New Meta Analysis Confirms: No Association Between Vaccines and Autism
Vaccine Myths Debunked
MMR Vaccine Does not Cause Autism
Do Vaccines Cause Autism?

The list above is from reputable sources. The government has done hundreds of studies and has looked at over 1.2 million children to try to see if this link exists. Everything that is found on their end and by private studies is there is no associated link between vaccines and autism.)

Before I had my son, I did watch a movie called “The Greater Good.” The documentary contained compelling anecdotes of parents in the documentary that believe that the MMR caused their child’s Autism.

If someone watching the movie has limited scientific knowledge, the film can easily persuade someone to believe the conspiracy theory. However, the documentary is nothing more than a fear-mongering, biased, anti-vaccine movie that pretends to be a balanced documentary. However, if you have a limited understanding of science, vaccines, or autism, the documentary could persuade you.


I encourage any new parent of a diagnosed child to research autism and vaccines. Go to sources that are reputable like the CDC or the National Institute of Health. You will find so much information that will help you understand Autism.

Understanding the disorder is the only way you can help your child. The more you know, the better you can prepare your child for the future.

Children with autism don’t need to be fixed or restored from ‘vaccine damage.’ Our children need patience, acceptance, and love. Vaccines did not cause my son’s autism. Nor do they cause any child’s autism.

Monday, December 24, 2018

Measles Cases Soar in Europe

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

Sarah Boseley at The Guardian:
A growing anti-vaccine movement in Europe, fuelled by social media and anti-establishment populists, is putting lives at risk and may be to blame for measles outbreaks surging to a 20-year high, health experts are warning.

A fresh Guardian analysis of WHO data shows that measles cases in Europe will top 60,000 this year - more than double that of 2017 and the highest this century. There have been 72 deaths, twice as many as in 2017.

Health experts warn that vaccine sceptics are driving down immunisation rates for measles, HPV against cervical cancer, flu and other diseases - and that their opinions are increasingly being amplified by social media and by rightwing populists equally sceptical of medical authorities.

Anti-vaxxers in the US celebrated the presidential election of Donald Trump, who has expressed scepticism over vaccines and invited Andrew Wakefield – the discredited gastroenterologist who has claimed the MMR vaccine was linked to autism – to his inaugural ball. Trump was also said to have been considering setting up a committee to investigate vaccines under the vocal anti-vaxxer Robert F Kennedy Jnr.

Sunday, December 23, 2018


In The Politics of Autism, I discuss the employment of adults with autism and other disabilities.  A growing number of businesses are making efforts to include autistic people.

At Sawinery:
The Autism Spectrum Disorder, more commonly called as ASD of Autism, is a condition that could have a wide-ranging symptoms for people. Difficulties in social interaction, communication, and focus on certain interest can limit people with autism and may further lead to behavioural challenges.
But this isn’t the case for everyone. Despite unique challenges, there are people with autism that are able to live beyond their diagnosis and enjoy a full and meaningful life. And such is the case for woodworker Gregory Chabolla.
Woodworking has become a means for people to live their lives fully despite different circumstances in life. We’ve previously talked to a former drug addict that found a new life in woodworking and people suffering from CPTSD who use woodworking as a way to cope with their symptoms, but Gregory’s story is a very special one that’s rarely encountered nowadays. Hence, we’re grateful to Gregory and his mom Michelle for sharing with us his wonderful journey. If you want to see Gregory’s works, visit his website ( and his Facebook page (

Saturday, December 22, 2018

Neurodiversity and the Social Model of Disability

In The Politics of Autism, I discuss the neurodiversity movement. 

Jacquiline den Houting has an article at Autism titled "Neurodiversity: An Insider’s Perspective."
[A] common criticism is the claim that the neurodiversity paradigm frames autism as a difference and a cultural identity, but not a disability (e.g., Jaarsma and Welin, 2012). This is seen by critics as a weakness of neurodiversity, as they assert that (for at least some autistic people), autism is clearly a disability. Critics may be pleasantly surprised to learn that I agree with them – autistic people are, very often, disabled. This statement, though, is not inconsistent with the assumptions of the neurodiversity paradigm. Within the neurodiversity movement, autism is conceptualised using the social model of disability. Under this model, disability is seen as resulting from a poor fit between the (physical, cognitive or emotional) characteristics of a given individual and the characteristics of their social context. A person is disabled not by their impairment, but by the failure of their environment to accommodate their needs (Oliver, 1996). In other words, disability results not from autism itself but instead from living in a society which tends to be physically, socially and emotionally inhospitable towards autistic people.

Friday, December 21, 2018

The Vaccine Theory and the KnowledgeVacuum

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

Stephen Camarata at Psychology Today:
This past week, Dr. Mark Green, M.D., who was recently elected to the U.S. House of Representatives from the state of Tennessee declared: “Let me say this about autism, I have committed to people in my community, up in Montgomery County [Tennessee], to stand on the CDC’s desk and get the real data on vaccines. Because there is some concern that the rise in autism is the result of the preservatives that are in our vaccines. As a physician, I can make that argument and I can look at it academically and make the argument against the CDC, if they really want to engage me on it,"[1]
As a clinician dedicated to serving people with autism and their families, I am both appalled and disheartened that a physician — and future member of Congress — has once again promulgated the "vaccines cause autism" narrative that has led to so much misinformation and fear regarding vaccinating toddlers and preschoolers against deadly diseases. Moreover, these shameful comments demonstrate why this lie has proven extremely difficult to overcome,

Another important challenge for clinicians, scientists, and public health officials is that the actual cause of autism is not yet known. Parents ask me whether vaccines cause autism, and I can (and do) confidently answer “no” and provide the sources included in this article for them to read. But then they ask what causes autism, and I have to say, “We do not yet know the cause.” The confident assertions that vaccines cause autism is met with an intellectually honest uncertainty that is not very comforting or reassuring to families. To be sure, I can offer honest hope in the form of effective, evidence-based treatments that will improve the symptoms of autism in their child, but it would be much more powerful to know the cause.
Not knowing what causes autism creates a knowledge vacuum that can be readily filled with the “certainty” that people, such as Dr. Green, who “know” vaccines cause autism and who argue that the CDC, federal government, “Big Pharma,” and the media are in an evil cabal to cover up the truth.

Thursday, December 20, 2018

School Safety

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

David Washburn at EdSource:
The long-awaited report from the Trump Administration’s school safety commission is being met by a chorus of criticism from the California education community, with state officials and representatives for school administrators joining youth advocates and union leaders in decrying some of the report’s key recommendations.
On these fronts, the 180-page report released Tuesday contained few surprises. It strongly recommended rescinding the Obama administration’s “Rethinking School Discipline” policies issued through the Education Department’s Office for Civil Rights in 2014, which emphasized alternatives to suspensions and expulsions and highlighted data showing that students of color and those with disabilities were up to three times as likely as white students to face these punishments, often for similar nonviolent offenses.
The article quotes Dan Losen, who leads UCLA’s Center for Civil Rights Remedies.
Also concerning, say Losen and others, is that the Education Department under DeVos continues to scuttle civil rights investigations that were begun during the Obama years. In June, the investigative news organization ProPublica reported that DeVos’ department ended at least 1,200 investigations that had been ongoing for six months without finding wrongdoing.
While Losen said he has “faith that most educators will continue to address unjustified racial and disability disparities,” he worries that the report could “stiffen the backbones of superintendents and principals who are old-school believers in harsh policies and have resisted the overwhelming research” that they disproportionately hurt minority students.

Wednesday, December 19, 2018

Treatment Studies Underrepresent Autistic Kids with Severe Impairments

In The Politics of Autism, I write:
Autism is political. It involves all kinds of government policy – from provision of education and social services, to regulation of insurance companies and medical professionals, to public funding of scientific research into its causes and treatment. The connections between government and autism reach farther than most people know. For example, many police officers and other first responders get training in how to deal with autistic people, who might react in unexpected ways during emergencies and crime investigations. Many organizations lobby policymakers and try to influence what government does about issues involving autism. Thomas Insel, director of the National Institute of Mental Health (NIMH), told journalist Andrew Solomon: “We get more calls from the White House about autism than about everything else combined.”

Autism is “political” in a broader sense. Political conflict involves ideas and arguments for which the information is often murky, incomplete, interpretive, and open to manipulation. Just about everything concerning autism is subject to dispute. What is it? What causes it? How many different kinds of it are there? Who has it? What can we do about it? Is it even the right problem to be thinking about? All of these questions, and many others, are the stuff of bitter political battles. The stakes are high: according to one estimate, the national cost of supporting people with autism adds up to $236 billion per year. Of course, such numbers themselves entail controversy. An alternative perspective is that they do not represent the cost of autism, but rather the cost of discrimination against people who have it, and the failure to help them lead independent lives.
At The Journal of Autism and Developmental Disorders, Amy Stedman and colleagues have an article titled "Are Children Severely Affected by Autism Spectrum Disorder Underrepresented in Treatment Studies? An Analysis of the Literature."  The abstract:
Despite significant advances in autism research, experts have noted that children severely affected by autism spectrum disorder (ASD) appear to have been understudied. Rigorous analysis of this observation has been limited, and the representation of severity has not been well-described. We assessed three domains of severity (communication ability, cognitive functioning, and adaptive functioning) in 367 treatment studies of children with ASD published 1991–2013. We found that the proportion of studies that included the severely affected population decreased significantly over time, as well as wide variability in measurement and reporting. Inadequate representation of the full autism spectrum in the literature could lead to an unbalanced picture of ASD and leave behind those with arguably the greatest need.
The article's conclusion:

The autism intervention literature contains marked variability, both currently and historically, in the measurement of severity domains, particularly communication ability, and appears to include a decreasing proportion of individuals who are severely affected by even a liberal definition of severity. Variability in defining and assessing severity in autism was underscored through empirical evidence that despite decades of advancement, the field has yet to reach a consensus on how to measure severity, and indeed if even core autism features, such as communication ability, should be considered necessary to report. Promulgation of a minimum standard set of measurement domains, and perhaps favored measures, by a governing body or journal editors, would likely benefit the field by increasing the comparability of different studies’ results and improving the interpretability of the findings through a more clear and consistent description of the sample. There was a notable decrease in the inclusion of the severely affected population over time, which may reflect changes in diagnostic criteria. This severe end of the autism spectrum, for whom assessment and treatment pose a particular challenge, is arguably the least well-understood. Exclusion of this subset from intervention and other research studies could ultimately lead to an unbalanced understanding of ASD, and possibly leave behind those who arguably have the greatest morbidity and need.

Tuesday, December 18, 2018

Rain Man at 30: The Good and the Bad

Karl Knights at The Guardian:
The film has become such a shorthand, that I and every autistic person I know immediately has to caveat the statement “I’m autistic” with “I’m not Rain Man”. Autistic people are frequently met with the same question that a doctor asks Raymond in the film: “Does he have any special abilities?” Rain Man was also the birthplace of what has now become a common trope of autistic portrayals in film and TV: autistic savants. The most recent incarnation of this is Shaun Murphy, played by Freddie Highmore, in The Good Doctor. The idea that all autistic people are geniuses, or that they all have savant abilities such as extraordinary memory, is a myth, a myth that is largely alive and kicking today due to Rain Man. Yet the cultural stereotype of Raymond Babbitt, the autistic savant, persists.

As a beginning for autism on screen, Rain Man deserves applause. It gave autistic people a visibility that had previously been denied them. In one fell swoop Rain Man achieved almost overnight the kind of representation that parent advocacy groups had been working towards for decades. But as the dominant depiction of autism on screen, it also deserves derision. The autistic community is more than Raymond Babbitt. While this wasn’t apparent in 1988, it is clear now, and yet, 30 years on, Rain Man’s enormous influence on autistic characters on screen shows no sign of abating. Rain Man continues to affect autistic lives, whether we like it or not.

Monday, December 17, 2018


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

Alex Berezow at The American Council on Science and Health:
One of these beliefs is not like the other: The moon landing was faked. 9/11 was an inside job. Vaccines cause autism.
What all the beliefs have in common is that they’re completely bonkers and quite rightly shunned by sane society. But the belief that vaccines cause autism is unique; unlike the other two myths, this one gets people killed. That is not an exaggeration; the gigantic measles outbreak that has swept Europe has claimed the lives of 37 people.
What makes the vaccine-autism myth even more astounding is that some high-profile people still feel comfortable claiming that it’s true. Congressman-Elect Mark Green, who represents a district in Tennessee, is one of those people. Stunningly, he is also a medical doctor.
But it gets worse. Green also believes that the CDC knows that vaccines cause autism, but that the organization is fraudulently hiding it. He also blamed autism on preservatives, a belief that has long been debunked.
Randy Rieland at Johns Hopkins Magazine:
"The starting point was the Wakefield study," says Meghan Moran, an assistant professor in the Bloomberg School of Public Health and a researcher who focuses on the communication of health information to the public. "It was a study by a real scientist and published in a real medical journal. Folks who didn't like vaccines to begin with were able to point to a specific study. We later found out it was fabricated and withdrawn from the literature. But the fact that it was withdrawn can be twisted into the belief that the medical industry doesn't want the real knowledge to come out. Because of social media, that idea can be disseminated much more rapidly and more widely today."

Those who oppose mandatory vaccinations often say they aren't actually anti-vaccine but rather pro-choice—that it should be a decision left up to the parents. It's a position that appeals to a broad spectrum of skeptics, according to Paul Offit, director of the Vaccine Education Center at Children's Hospital of Philadelphia: "On the right, it's more of a libertarian argument: 'I don't think I should be made to have a biological fluid injected into myself or my child. Let me do my own research and I will make the best decision for my family. Get the government off my back.' On the left, it's 'I want all things natural. Injecting a biological thing into my child's arm is not a natural thing to do.' Two different arguments, both ill-founded."
The challenge is that the persistent and strategic use of social media by the anti-vaccine movement has enabled it to have an outsize influence. Michael Kinch, director of Washington University's Center for Research Innovation in Business, remembers the reaction to his recent book, Between Hope and Fear: A History of Vaccines and Human Immunity. "Within the first few hours the book was out, the anti-vaxxers went on Amazon and smeared it," he says. "This group is very organized. Anyone who underestimates them does so at their own risk. When they do things like this, you just have to assume that they mean well. They're convinced that vaccines cause harm."

Sunday, December 16, 2018

Rain Man is Thirty

In The Politics of Autism, I discuss depictions of ASD in popular culture.  

This past week marked the 30th anniversary of Rain Man.

Cameron Knight at The Cincinnati Enquirer
Mary Helen Richer is the executive director of the Autism Society of Greater Cincinnati, formerly called the Society for Autistic Children of Greater Cincinnati.
She said opinions of Rain Man will vary depending on who you speak with. For her, the spotlight the film shined on autism outweighs most of the stereotypes the film may have perpetuated.

"Thirty years ago, when the movie came out. No one knew what autism was," Richer said. "It catapulted autism to the forefront of awareness."
Richer warns that, just like Rain Man, these examples each show one person and one example of what life is like on the autism spectrum.
"There is nothing out there that shows a full view of what autism is," she said.
As for the Cincinnati favorite, Richer says it holds up as long as you know not everyone with autism is like Raymond Babbitt.
"It's a great movie," she said. "How can you not love it for the awareness it raises and for taking on a serious topic and making it accessible."
Jay McCarthy at The Guardian:
Thirty years on, as the parent of a child with autism, I view the film very differently. I found watching it again unexpectedly moving, as I identified with Charlie’s journey from frustration and bewilderment to understanding. How, I wondered, does the autism community view the movie? “Many say that Rain Man is now damaging to autism awareness, and I see their point,” says the autism advocate Chris Bonnello of Autistic Not Weird, who has Asperger’s syndrome. The film, he believes, “should be regarded as a piece of history now”. When I put this question to Bonnello’s Facebook community, views were mixed. Although some enjoyed Rain Man, many found it “dated” and “inaccurate”. One individual on the spectrum called it “the Apu of autism ... despite not being malicious in its portrayal, it’s still a poor representation and a stereotype.”

Saturday, December 15, 2018

Mandates and Out-of-Pocket Spending

The Politics of Autism includes an extensive discussion of insurance.

Molly K. Candon and colleagues have an article at Pediatrics titled "Insurance Mandates and Out-of-Pocket Spending for Children With Autism Spectrum Disorder." The abstract:
BACKGROUND: The health care costs associated with treating autism spectrum disorder (ASD) in children can be substantial. State-level mandates that require insurers to cover ASD-specific services may lessen the financial burden families face by shifting health care spending to insurers.

METHODS: We estimated the effects of ASD mandates on out-of-pocket spending, insurer spending, and the share of total spending paid out of pocket for ASD-specific services. We used administrative claims data from 2008 to 2012 from 3 commercial insurers, and took a difference-in-differences approach in which children who were subject to mandates were compared with children who were not. Because mandates have heterogeneous effects based on the extent of children’s service use, we performed subsample analyses by calculating quintiles based on average monthly total spending on ASD-specific services. The sample included 106 977 children with ASD across 50 states.

RESULTS: Mandates increased out-of-pocket spending but decreased the share of spending paid out of pocket for ASD-specific services on average. The effects were driven largely by children in the highest-spending quintile, who experienced an average increase of $35 per month in out-of-pocket spending (P < .001) and a 4 percentage point decline in the share of spending paid out of pocket (P < .001).

CONCLUSIONS: ASD mandates shifted health care spending for ASD-specific services from families to insurers. However, families in the highest-spending quintile still spent an average of >$200 per month out of pocket on these services. To help ease their financial burden, policies in which children with higher service use are targeted may be warranted.

Friday, December 14, 2018

Pushback Against Reckless Congressman

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

Natalie Allison at the Nashville Tennessean
A day after U.S. Rep.-elect Mark Green drew national attention for his remarks suggesting a possible link between vaccines and autism, another Tennessee Republican in Washington took a stand for the public health benefits of vaccinations.
"Vaccines take deadly, awful, ravaging diseases from horror to history," U.S. Sen. Lamar Alexander tweeted Thursday.

The senator's remarks were followed by a terse 30-word statement from the Tennessee Department of Health later in the day Thursday, beginning with the phrase "Vaccines do not cause autism."
Alexander, who chairs the Senate Health, Education, Labor and Pensions Committee, tweeted a quote from a video he shared of him previously speaking about vaccines in the committee.
"Sound science is this," Alexander said in the committee meeting. "Vaccines save lives. They save the lives of people that are vaccinated. They protect the lives of the vulnerable around them, like infants and those who are ill."
Green, a Republican state senator from Clarksville who is also a physician, will be sworn-in to the U.S. House of Representatives, his first term, Jan. 3.

Tennessee Department of Health Statement on Immunizations Thursday, December 13, 2018 | 04:29pm NASHVILLE – Vaccines do not cause autism. Vaccines save lives. The Tennessee Department of Health welcomes discussion with Tennessee clinicians and scientists who would like to examine the evidence on this topic. ###

Thursday, December 13, 2018

Disgrace: Congressman-Elect Pushes Autism-Vaccine Notion

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

Natalie Allison reports at The Nashville Tennessean:
A soon-to-be congressman from Tennessee told constituents Tuesday he believed vaccines may be causing autism, questioning data from the Centers for Disease Control and other institutions disproving such a theory.
Not only did Republican Mark Green, a Congressman-elect from Clarksville who is also a medical doctor, express hesitation about the CDC's stance on vaccines, he also said he believed the federal health agency has "fraudulently managed" the data.
His remarks came in response to an audience question at a town hall meeting in Franklin from a woman identifying herself as the parent of a young adult with autism. The woman was concerned about possible cuts to Medicaid funding.
"Let me say this about autism," Green said. "I have committed to people in my community, up in Montgomery County, to stand on the CDC’s desk and get the real data on vaccines. Because there is some concern that the rise in autism is the result of the preservatives that are in our vaccines.

Felicia Sonmez at WP:
Peter Hotez, dean of the National School of Tropical Medicine at the Baylor College of Medicine, said that it was shocking that a newly elected congressman “would openly espouse such blatant antiscience and discredited views.”
“The science is clear: Vaccines do not cause autism or the other things the antivaccine lobby alleges,” said Hotez, whose recent book, “Vaccines Did Not Cause Rachel’s Autism,” draws on his experience as a vaccine expert and the father of an autistic child.
He added that without Green’s “immediate reaction and heartfelt apology, he deserves censure or exclusion.”
A spokesman for Green did not respond to a request for clarification of the congressman-elect’s claim that the CDC’s data may have been “fraudulently managed.”
Green was recently elected president of the Republican freshman class. He last year withdrew as President Trump’s nominee for Army secretary amid criticism of his past comments about Islam, evolution and LGBT issues.

Wednesday, December 12, 2018

Protesting Restraint

In The Politics of Autismdiscuss the use of restraint and seclusion.  Many posts have mentioned these techniques, both in schools and facilities for people with disabilities.

Sawsan Morrar at The Sacramento Bee:
A small group of former students, advocates and parents gathered in front of the California Department of Education Monday to demand the closure of a school where a teen with autism stopped breathing and later died after being restrained by staff.
Nearly a dozen protestors said they were demanding the immediate closure of Guiding Hands School in El Dorado Hills. Those gathered also said they believed state regulators didn’t do enough to prevent the death of Max Benson, 13, who died Nov. 29, a day after school staff put him in a face-down restraint for an extended period of time.
Katie Kaufman, 20, a former Guiding Hands student who attended the school for two years until she left in 2012, attended Monday’s rally. Kaufman said she was put in a face-down prone restraint multiple times, and was once body slammed onto a cement floor resulting in a bloodied chin.
Doug Johnson at Fox40 Sacramento:

Tuesday, December 11, 2018

The Autism Services Market

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

Ronit Molko at Forbes:
The autism services market is estimated to be worth around $5 billion to $7 billion annually and it’s growing, with a total addressable market estimated between $50 billion and $90 billion. The majority of the services provided to individuals with autism are behavioral services and are provided at home, in school, or in a clinic setting. Most of these services are based on the science of applied behavior analysis, or ABA, which is a scientific method that employs specific techniques and principles to impart skills and bring about meaningful changes in behavior. ABA is the most widely funded treatment option that private insurance companies, or state or federal programs, will cover.
 While the current national players are acquiring smaller providers to grow their platforms, there are still many underserved communities and many opportunities for organic growth. As of 2016, it was reported that the top nine multi-site providers accounted for nearly $400 million in revenues – almost 40 percent of the market share, but the market, and these companies, have grown considerably in the past two years. Despite the efforts by investors to consolidate the market, there is still space for more providers on the national level.

Monday, December 10, 2018

A Death in El Dorado Hills

In The Politics of Autismdiscuss the use of restraint and seclusion.  Many posts have mentioned these techniques, both in schools and facilities for people with disabilities.

At a California school, an autistic student stopped breathing after nearly an hour under prone restraint. Sawsan Morrar and Phillip Reese at The Sacramento Bee:
The boy, identified by the Sacramento County Coroner’s Office as Max Benson, 13, became unresponsive while in the restraint hold and died a day later at UC Davis Medical Center.
The incident took place Nov. 28 at Guiding Hands School on Windplay Drive, according to the El Dorado County Sheriff’s Office. Benson became unresponsive while being held in a ‘prone restraint’ for nearly an hour, according to a source familiar with the investigation.
In a letter sent to the school’s site administrator, Cindy Keller, on Dec. 5 from the California Department of Education and released to The Sacramento Bee through a California Public Records Act request, state regulators found “sufficient evidence” that the facility had violated multiple state rules governing how and when physical restraints can be used on students.
Those violations included using an emergency intervention — the prone restraint — for “predictable behavior,” using an emergency intervention as a substitute for the student’s personally-designed behavior intervention plan and using the restraint for longer than necessary.

Sunday, December 9, 2018

Social Media and Twice-Exceptional Students

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

Twice-exceptional students are both gifted and disabled.  Many are autistic. At Education Week, Sasha Jones writes:
Twice-exceptional parents are not the first to take advantage of online connection, offering support and information to those hungry for it, and even driving state and national-level change. The advocacy group Decoding Dyslexia, for example, grew out of social media and now has branches in all 50 states, 42 of which have passed dyslexia-specific laws.
Robbi Cooper, a parent involved in policy and advocacy at Decoding Dyslexia Texas, says that social media connects advocates involved in various parts of the legislative process and builds support from lawmakers and administrators.
"Social media allows the door to open when the door's not locked. If the door is locked, then they won't let you in—but that doesn't mean there's nothing you can do," Cooper said, indicating that continued growth and research can serve as the key. "Once they start listening to you and start taking you seriously, then they unlock the door."

Saturday, December 8, 2018

Unvaccinated in Oregon

Blair Stenvick at Portland Mercury:
In Oregon, where both libertarians and natural lifestyle devotees abound, the anti-vaccination mindset is particularly strong. At 7.5 percent, Oregon currently has the highest percent of kindergartners in the country whose guardians claim exemptions for vaccinations on philosophical or religious grounds. That’s a full percentage point higher than what Oregon recorded in 2017—and the figure has risen steadily since the early 2000s.
“There’s an extraordinary amount of information, much of it wrong, some of it right, on the internet,” says State Representative Mitch Greenlick, who chairs the health committee in the Oregon House of Representatives. “This is part of a wave of anti-science attitudes in the country, and even the state.”

Oregon parents are generally required to have their kindergartners vaccinated against diphtheria, measles, mumps, rubella, polio, chickenpox, Hepatitis A and B, and tetanus. But there are exemptions for kids who have medical conditions that would make vaccines dangerous—and for kids whose parents cite religious or philosophical objections to vaccines.
In 2013, Oregon passed a law requiring that parents who claim non-medical vaccine exemptions must either watch an hour-long online video about vaccines produced by the Oregon Health Authority (OHA) or discuss vaccines with a medical professional. But the law has failed to make a meaningful impact on vaccination rates: While Oregon’s rate dropped in 2015 from 7 percent to 5.8 percent, it climbed steadily to 7.5 percent between 2015 and 2018, making the exemption rate higher than before the law went into effect.