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Sunday, July 31, 2016

To Be Autistic, Hispanic, and Facing the Police

In The Politics of Autism, I discuss interactions between first responders and autistic people.  Police officers need training to respond appropriately.  When they do not, things get out of hand.

Matt Ramos writes about his son at The Washington Post:
Comply, comply, comply was what I was taught, and it’s what I’ve been teaching my sons, to the point that they can probably repeat the speech my father gave me. But how am I supposed to teach those words to someone who doesn’t understand language the way I do? How am I supposed to warn my son about the dangers facing those who look like him when he can’t even conceptualize those differences?
Jojo can’t scream “I can’t breathe” while being held down, like Eric Garner. He wouldn’t react to an officer pulling up next to him with sirens blasting and guns drawn, like Tamir Rice. He can’t even put his hands up and yell that he doesn’t have a gun, like Charles Kinsey. It’s not that he wouldn’t comply; it’s that he simply isn’t wired to, and he never will be. I can tell him to listen to and obey anyone wearing a uniform until my last breath, and it would be the same as if I never spoke at all.

I hear stories of people like Brian C. Bates, who had run off from his home in Virginia. Neighbors called the cops after hearing him repeating the names of pro wrestlers and talking to cats, things I could see Jojo doing. Four officers tackled him. They couldn’t make out that he was different, and he was knocked down repeatedly.
Then there’s Robert Ethan Saylor, who had the benefit of white skin and clearly presented as having Down’s syndrome, but was choked to death by off-duty officers in a Maryland movie theater. The officers, who were trying to remove Saylor from the theater and didn’t recognize his condition, were not charged with a crime because Saylor cursed and struck at them — another way Jojo lashes out if he feels threatened.

Saturday, July 30, 2016

Suzanne Wright, RIP

The Politics of Autism includes a discussion of major interest groups such as Autism Speaks.

From Autism Speaks:
Autism Speaks announced today that its co-founder Suzanne Wright died this afternoon, Friday, July 29, at her home in Fairfield, CT. Suzanne, who fought a courageous nine-month battle with pancreatic cancer, was surrounded by her family at the time of her death. She was 69.
In 2005, Suzanne and her husband, Bob Wright, co-founded Autism Speaks after their grandson, Christian, was diagnosed with autism. Guided by the Wrights’ leadership and vision, Autism Speaks has since grown into the world’s leading autism science and advocacy organization.
At the helm of Autism Speaks, Suzanne helped create the iconic blue puzzle-piece logo that is now recognized around the world to represent autism. Working with the Ad Council and BBDO Worldwide, Suzanne and Bob Wright launched a ten-year public service announcement campaign that is credited with educating countless families about the early signs of autism. Suzanne also led Autism Speaks’ signature global awareness initiatives. Her indefatigable determination was key to persuading the United Nations to establish April 2nd as World Autism Awareness Day, establishing the annual World Focus on Autism, and launching the international Light It Up Blue campaign, which this year lit landmarks, buildings and homes in 157 countries.
As part of the United Nations’ World Autism Awareness Day, Suzanne addressed the United Nations’ General Assembly every year for eight consecutive years. In addition, in conjunction with this event, she organized and hosted the annual World Focus on Autism, an unprecedented gathering of first ladies and dignitaries from around the world, devoted to planning and coordinating efforts to raise autism awareness. In November 2014, Suzanne spoke at the Vatican’s first-ever conference on autism, where she called for all nations and faiths to “walk next to the 70 million children, teens and adults with autism around the world every day.”

Friday, July 29, 2016

Police and Autistic People: the Bad and the Good

In The Politics of Autism, I discuss interactions between first responders and autistic people.  Police officers need training to respond appropriately.  When they do not, things get out of hand.

An attorney for a man with autism who was placed in a psychiatric unit after witnessing another man get shot by a police officer is urging the Department of Justice to investigate the North Miami Police and state of Florida.
Matthew Dietz, the attorney for Arnaldo Rios, wrote a letter Monday to Attorney General Loretta Lynch, claiming that Rios was placed in a facility "inappropriate for his needs" after the shooting. The Arc, a national organization that advocates for people with intellectual and developmental disabilities, sent a letter to the DOJ's Civil Rights Division on Thursday in support of Dietz's request for an investigation. Arc said "it is vital that Mr. Rios secures an appropriate community placement as soon as possible."
On July 18, Charles Kinsey, a behavioral therapist who worked with Rios at MacTown Panther Group Homes, where Rios lived, was shot and injured by a police officer while lying on the ground next to Rios. The shooting took place about 600 feet from the home. 
At The Seattle Times, editorial page editor Kate Riley recalls that Washington state troopers responded professionally and humanely when her son had a meltdown in her car.
Kinsey’s situation and my family’s were very different. In his case, police were investigating a report of a man carrying a weapon. In ours, I told the dispatcher, and the trooper, repeatedly that my son has autism, was in a highly agitated state but has never, ever been violent.

Another difference: Washington state is the only state in the nation that requires crisis-intervention training for police officers. The 2015 Washington Legislature required all commissioned peace officers to have at least eight hours of training to equip them better to deal with these complex situations.

An impetus was the tragic police shooting death of Doug Ostling, a man with mental illness and suspected autism. A federal jury awarded $1 million to Ostling’s family after concluding the city of Bainbridge Island and its police chief failed to provide adequate training to its officers.

Credit for the mandatory training goes to many but especially to state Sen. Christine Rolfes, D-Bainbridge Island, Sue Rahr, the Washington State Criminal Justice Training Commission director, and Ostling’s parents, Bill and Joyce, warriors for all the families like ours, who would not rest.

As of this week, about 4,600 of the state’s 10,089 certified peace officers have received the minimum training, and the rest are expected to by July 1, 2018, three years ahead of schedule.

Thursday, July 28, 2016

Jill Stein & Vaccines

Trump has raised unfounded concerns about vaccines.  The Green Party candidate is also wading in those waters.

Jordan Weissman writes at Slate:
Worse, though, was Stein's response during a Reddit AMA when she was asked about her party's stance on vaccines. Her answer was a 380-word evasion in which she allowed that childhood immunizations had “made a huge contribution to the public health” while simultaneously suggesting that Americans have good reason to be wary of the drug approval process and that there's “a lot of snake-oil in this system.” She wrote:
In most countries, people trust their regulatory agencies and have very high rates of vaccination through voluntary programs. In the US, however, regulatory agencies are routinely packed with corporate lobbyists and CEOs. So the foxes are guarding the chicken coop as usual in the US. So who wouldn't be skeptical?
Despite clearly understanding that vaccines are safe, Stein is pandering to her audience by telling them their worries are justified and offering fuel for those fears by painting a dark picture of a corrupt regulatory apparatus. For comparison, consider Bernie Sanders' answer on the same life or death issue, as reported by as reported by the Daily Beast:
“I think obviously vaccinations work. Vaccination has worked for many, many years.” He went on to note, “I am sensitive to the fact that there are some families who disagree but the difficulty is if I have a kid who is suffering from an illness who is subjected to a kid who walks into a room without vaccines that could kill that child and that’s wrong.”
That's a straightforward answer about vaccines. Risking the health of other people's children to satisfy your own minority concerns about medical science is wrong.

Wednesday, July 27, 2016

More on Diagnostic Migration

In The Politics of Autism, I discuss prevalence and talk of an "autism epidemic."

In May, Mary Platt reported at Chapman University:
During their recent DisAbility Summit, held at Chapman University’s Musco Center for the Arts, which drew hundreds of educators, health professionals, parents and policy-makers — and in their many media interviews since then — researchers at Chapman’s Thompson Policy Institute (TPI) for Disability and Autism have put forth some new numbers that are getting people talking.
The autism community (parents and families, educators, health workers, fund-raisers) — famously polarized due to ongoing claims and theories about what exactly causes autism and what’s behind the current dramatic increase in autism diagnoses (environmental or man-made factors, better or worse methods of diagnosing, etc.) — now has a new set of data to ponder. In California and OC alone, there has been a jump in autism diagnoses from 2 to 12.5 percent of children statewide in special education since 2000, and from 2.5 to almost 19 percent in Orange County.
The Chapman experts attribute the sharp increase in autism diagnoses to what they call “diagnostic migration” — that is, it can be statistically explained by the fact that children who receive an autism diagnosis today would still have been eligible for special education in earlier years, but within a different category, called Specific Learning Disabilities (SLD) – a category assigned to children who don’t have an intellectual impairment but who perform below expectations academically. Autism diagnoses have clearly increased while SLD eligibility has decreased correspondingly, the experts say. They also argue that almost all new cases of “Other Health Impaired” (OHI) – a category which includes ADHD and has grown almost as fast as autism — can be attributed to the same factor.\ 
“All children and youth in California special education are assigned to a primary category — a label, if you will,” said Don Cardinal, Ph.D., lead investigator for the TPI. “While the total special education enrollment across all categories has remained constant when considering general population growth, the number of children in some categories has decreased and others, such as autism, have increased. Only one category — Specific Learning Disabilities (SLD) has substantially decreased, by 64,842 kids since 2000. But two categories have substantially increased during that time: autism has increased by 76,755 — over six times the number in 2000; and OHI has increased by 55,603 kids, over four times the number of 15 years ago. We believe it’s accurate to say that the increase in OHI is actually an increase in ADHD.
“When we tested these data in a mathematical model, we found that the diagnostic migration (movement within disability categories) strongly explains the alarming increase in the autism rate among children in California, and likely the nation,” Dr. Cardinal concluded. “Due to California’s demographics, large size, and the extremely large size of the TPI sample — some 700,000 children per year — we believe these results are compelling enough to be tested on data from other states, toward being able to generalize the findings nationally.”
The policy implications from this study, say Dr. Cardinal and TPI co-investigator Dr. Amy Jane Griffiths, are wide-ranging. “In schools, if we properly align our policies and procedures to this new information, children will reap the rewards of a more specific and personalized education plan,” said Dr. Griffiths. “In the adult life of those identified with autism, understanding what policies need to be developed or changed to create better supports for young and mature adults is an immediate need — and TPI’s initial work on Autism in the Workplace is a starting place.”

Tuesday, July 26, 2016

Democratic Platform on Autism and Disability

In The Politics of Autism, I discuss the issue's role in presidential campaigns.    A previous post excerpted the Republican platform, and here are Democratic platform provisions dealing with autism and disability.

Democratic  Platform:
We believe in protecting civil liberties and guaranteeing civil rights and voting rights, women’srights and workers’ rights, LGBT rights, and rights for people with disabilities.

We also support creating one fair wage for all workers by ending the sub-minimum wage for tipped workers and people with disabilities.

We will increase investments to make quality childcare more affordable, boost wages for childcare workers, and support the millions of people paying for, coordinating, or providing care for aging relatives or those with disabilities.

Democrats believe that we should provide more federal resources to the people struggling most with unaffordable housing: low-income families, people with disabilities, veterans, and the elderly.
Democrats believe we must harness the promise of technological innovation to promote community participation and enhance opportunities to achieve greater economic self-sufficiency for people with disabilities.
The unemployment rates for African American, Latino, Asian American and Pacific Islander (AAPI), and American Indian teenagers and youth with disabilities are far too high. That is why Democrats will provide direct federal funding for a range of local programs that will put young people to work and create new career opportunities.

It is unacceptable that the median wealth for African Americans and Latino Americans is roughly one-tenth that of white Americans. These disparities are also stark for American Indians and certain Asian American subgroups, and may become 15 even more significant when considering other characteristics such as age, disability status, sexual orientation, or gender identity.
Democrats will always fight to end discrimination on the basis of race, ethnicity, national origin, language, religion, gender, age, sexual orientation, gender identity, or disability. We need to promote civility and speak out against bigotry and other forms of intolerance that have entered our political discourse. It is unacceptable to target, defame, or exclude anyone because of their race, ethnicity, national origin, language, religion, gender, age, sexual orientation, gender identity, or disability. While freedom of expression is a fundamental constitutional principle, we must condemn hate speech that creates a fertile climate for violence. We condemn Donald Trump’s demonization of prisoners of war, women, Muslims, Mexicans, and people with disabilities; his playing coy with white supremacists; and the climate of bigotry he is creating.
No one should face discrimination based on disability status. Democrats are committed to realizing the full promise of the Americans with Disabilities Act. We will protect and expand the right of Americans with disabilities to get the accommodations and support they need to live in integrated community settings. We will improve access to meaningful and gainful employment for people with disabilities. We will provide tax relief to help the millions of families caring for aging relatives or family members with chronic illnesses or disabilities. And we will continue to fight for ratification of the Convention on the Rights of Persons with Disabilities.
And we will continue to fight against discriminatory voter identification laws, which disproportionately burden young voters, diverse communities, people of color, lowincome families, people with disabilities, the elderly, and women.
We will equip the Census Bureau with the resources needed to prepare for and conduct a cost effective, complete and accurate census, as well as improve counting segments of the population that are historically and persistently undercounted, specifically communities of color, immigrants, LGBT people, young children, those with disabilities, and rural and low-income populations. We will also maintain the legal requirement for the public to participate and be counted.
We will hold schools, districts, communities, and states accountable for raising achievement levels for all students—particularly low-income students, students of color, English Language Learners, and students with disabilities.

We must fulfill our national commitment to provide a meaningful education to students with disabilities, and work towards full funding of the Individuals with Disabilities Education Act so that students with disabilities can receive the extra resources and services they need. With an appropriate educational foundation, children with disabilities can thrive and become adults with greater opportunities and more meaningful life experiences.

We are also deeply committed to ensuring that we strike a better balance on testing so that it informs, but does not drive, instruction. To that end, we encourage states to develop a multiple measures approach to assessment, and we believe that standardized tests must be reliable and valid. We oppose high-stakes standardized tests that falsely and unfairly label students of color, students with disabilities and English Language Learners as failing; the use of standardized test scores as basis for refusing to fund schools or to close schools; and the use of student test scores in teacher and principal evaluations, a practice which has been repeatedly rejected by researchers. We support enabling parents to opt their children out of standardized tests without penalty for either the student or their school.

We will invest in high-quality STEAM classes, community schools, computer science education, arts educat on, and expand link learning models and career pathways. We will end the school-to prison pipeline by opposing discipline policies which  disproportionately affect African Americans and Latinos, Native Americans and Alaska Natives, students with disabilities, and youth who identify as LGBT.
Charter schools must reflect their communities, and thus must accept and retain proportionate numbers of students of color, students with disabilities and English Language Learners in relation to their neighborhood public schools.
Democrats believe that our country must make supporting the millions of individuals with autism and those diagnosed in the future and their families a priority. We will conduct a nationwide early screening outreach campaign to ensure that all children, and in particular children from underserved backgrounds, can get screened for autism. We will expand services and support for adults and individuals transitioning into adulthood, including employment and housing assistance. And we will push states to require health insurance coverage for autism services in private insurance plans as well as state marketplaces so that people with autism are not denied care.  
We will address the discrimination and barriers that inhibit meaningful access to reproductive health care services, including those based on gender, sexuality, race, income, disability, and other factors. We recognize that quality, affordable comprehensive health care, evidence-based sex education and a full range of family planning services help reduce the number of unintended pregnancies and thereby also reduce the need for abortions.
Our country faces a long-term care crisis that prevents too many seniors and people with disabilities from being able to live with dignity at home or in their communities. The vast majority of people who are aging or living with a disability want to do so at home, but face challenges finding and affording the support they need to do so. Programs that emphasize independence rather than institutionalization must be better structured to support them. Democrats will take steps to strengthen and expand the home care workforce, give seniors and people with disabilities access to quality, affordable long-term care, services, and supports, and ensure that all of these resources are readily available at home or in the community.
Our values of inclusion and tolerance inspire hope around the world and make us safer at home. The world will be more secure, stable, and peaceful when all people are able to reach their God-given potential and live in freedom and dignity. We strive to ensure that the values upon which our country was built, including our belief that all people are created equal, are reflected in everything our nation does. That is why we will promote peacebuilding, protect democracy, and champion human rights defenders. And we will seek to safeguard vulnerable minorities, including LGBT people and people with disabilities

Republican Platform on Autism and Disability

In The Politics of Autism, I discuss the issue's role in presidential campaigns.  

GOP Platform:
We reaffirm the Constitution’s fundamental principles: limited government, separation of powers, individual liberty, and the rule of law. We denounce bigotry, racism, anti-Semitism, ethnic prejudice, and religious intolerance. Therefore, we oppose discrimination based on race, sex, religion, creed, disability, or national origin and support statutes to end such discrimination.
We support the appointment of judges who respect traditional family values and the sanctity of innocent human life. We oppose the non-consensual withholding or withdrawal of care or treatment, including food and water, from individuals with disabilities, newborns, the elderly, or the infirm, just as we oppose euthanasia and assisted suicide.
We call on Congress to ban sex-selection abortions and abortions based on disabilities --discrimination in its most lethal form. 
[The] Workplace Innovation and Opportunity Act — modernizing workforce programs, repealing mandates, and advancing employment for persons with disabilities — is now law. 
American medicine is poised to enter a new era of technological advance. Federal and private investment in basic and applied biomedical research holds enormous promise, especially with diseases and disorders like autism, Alzheimer’s, and Parkinson’s. 
Under the last two Republican presidents, landmark civil rights legislation affirmed the inherent rights of persons with disabilities. Republicans want to support those rights by guaranteeing access to education and the tools necessary to compete in the mainstream of society. This is not just a moral obligation to our fellow Americans with disabilities. It is our duty to our country’s future to tap this vast pool of talented individuals who want to work and contribute to the common good. For that reason, Republican leadership led to enactment of the ABLE Act (Achieving a Better Life Experience) and the Steve Gleason Act. The former, for the first time, lets people with disabilities maintain access to services while saving to develop assets. The latter, bearing the name of the former NFL player with ALS, provides access to speech-generating devices. In addition, our Workforce Innovation and Opportunity Act will make it easier for students with disabilities to pursue competitive employment. 
Persons with disabilities are nearly twiceas likely to be self-employed as the general population. To encourage their entrepreneurship, it makes sense to include them in the Small Business Administration’s 8(a) certification program, which opens up federal contracting for emerging businesses. Any restructuring of the tax code should consider ways in which companies can benefit from the talent and energy of their disabled employees.
The Individuals with Disabilities Education Act (IDEA) has opened up unprecedented opportunities for many students. Congressional Republicans will lead in its reauthorization, as well as renewal of the Higher Education Act, which can offer students with disabilities increased access to the general curriculum. Our TIME Act (Transition to Integrated and Meaningful Employment) will modernize the Fair Labor Standards Act to encourage competitive employment for persons with disabilities. We affirm our support for its goal of minimizing the separation of children with disabilities from their peers. We endorse efforts like Employment First that replace dependency with jobs in the mainstream of the American workforce.
We oppose the non-consensual withholding of care or treatment from people with disabilities, including newborns, the elderly, and infirm, just as we oppose euthanasia and assisted suicide, which endanger especially those on the margins of society. We urge the Drug Enforcement Administration to restore its ban on the use of controlled substances for physician-assisted suicide. 
Precisely because we take our country’s treaty obligations seriously, we oppose ratification of international agreements whose long-range implications are ominous or unclear. We do not support the U.N. Convention on Women’s Rights, the Convention on the Rights of the Child, the Convention on the Rights of Persons with Disabilities, and the U.N. Arms Trade Treaty, as well as various declarations from the U.N. Conference on Environment and Development.

Monday, July 25, 2016

Study Raises Doubts About Induced Labor as a Cause of ASD

In The Politics of Autism, I discuss various ideas about what causes the condition.  Sometimes, research identifies potential risk factors, but sometimes it tends to disconfirm them.

A release from the Harvard T.H. Chan School of Public Health:
Induction of labor appears not to be associated with increased risk of autism spectrum disorders in children in a large new study led by Harvard T.H. Chan School of Public Health. The new finding suggests that concern about autism risk should not factor into clinical decisions about whether or not to induce labor.
The study will be published online July 25, 2016 in JAMA Pediatrics.
Autism spectrum disorders (ASD) —a group of permanent developmental disabilities characterized by impairments in social interaction, language development, and repetitive behaviors—are estimated to affect roughly 1 in 90 children in the U.S.
Labor induction is recommended when labor doesn’t progress on its own and there’s concern that waiting for it to start could endanger the health of the baby or mother. Methods to induce labor include rupturing of membranes, mechanical or pharmacological ripening of the cervix, and administration of oxytocin, either used alone or in combination.
In 2013, a large study in North Carolina found an association between induction of labor and risk of autism in offspring. The report gained widespread media attention, and although both the paper’s authors and other experts cautioned that the association may not be causal, obstetricians began reporting that some of their patients were expressing concern about or opposition to being induced. The Harvard Chan School researchers decided to further explore whether induction of labor truly causes increased risk of neuropsychiatric disorders, in order to help in weighing the risks and benefits of this common therapeutic intervention.
“When we used close relatives, such as siblings or cousins, as the comparison group, we found no association between labor induction and autism risk,” said Anna Sara Oberg, research fellow in the Department of Epidemiology at Harvard Chan School and lead author of the study. “Many of the factors that could lead to both induction of labor and autism are completely or partially shared by siblings—such as maternal characteristics or socioeconomic or genetic factors. Finding no association when comparing siblings suggests that previously observed associations could have been due to some of these familial factors—not the result of induction.”
Working with colleagues from Sweden’s Karolinska Institutet and Karolinska University Hospital, Harvard Medical School, andIndiana University, the Harvard Chan School researchers studied all live births in Sweden from 1992–2005. They followed over 1 million births through 2013, looking for any neuropsychiatric diagnoses and identifying all siblings and maternal first cousins. They also incorporated several measures of the mothers’ health in their analysis.
Nearly 2% of babies in the study population were diagnosed with autism during the follow-up period, the researchers found. Overall, 11% of the deliveries had involved induction of labor, often occurring in conjunction with pregnancy complications such as gestational diabetes, gestational hypertension, and preeclampsia; 23% of the induced pregnancies were post-term.
In their initial comparison of individuals who weren’t related to each other, the researchers found an association between labor induction and ASD risk, similar to that previously reported. But when they compared “induction-discordant” siblings (children born to the same mother—in one, labor was induced, in the other, it wasn’t), they no longer saw an association.
“Overall, these findings should provide reassurance to women who are about to give birth, that having their labor induced will not increase their child’s risk of developing autism spectrum disorders,” said Brian Bateman, anesthesiologist and associate professor of anesthesia at Massachusetts General Hospital and Brigham and Women’s Hospital, Harvard Medical School, and senior author of the study.
“It is important to note that the findings pertain to the risks associated with labor induction per se, and not the specific method or medication used in the process, including oxytocin,” said Oberg.
Sonia Hernández-Díaz, professor of epidemiology at Harvard Chan School, was a co-author of the study. Funding for the study came from grants 2012-34 (International Postdoctoral grant) and 340-2013-5867 (Swedish Initiative for Research on Microdata in the Social and Medical Sciences [SIMSAM]) from the Swedish Research Council and grants K08HD075831 and R01HD061817 from theNational Institutes of Health Eunice Kennedy Shriver National Institute of Child Health & Human Development.
“Association of Labor Induction With Offspring Risk of Autism Spectrum Disorders,” Anna Sara Oberg, Brian M. D’Onofrio, Martin E. Rickert, Sonia Hernandez-Diaz, Jeffrey L. Ecker, Catarina Almqvist, Henrik Larsson, Paul Lichtenstein, and Brian T. Bateman, JAMA Pediatrics, online July 25, 2016, doi: 10.1001/jamapediatrics.2016.0965
Visit the Harvard Chan School website for the latest news, press releases, and multimedia offerings.
For more information:
Marge Dwyer

Sunday, July 24, 2016

The North Miami Incident and Police Training

Autistic people may have poor eye contact or engage in repetitive behaviors, which may strike police officers as suspicious. They also might be slow to react to police commands, which can cause a routine stop to spin out of control. In Greenville, South Carolina, one news account tells of an autistic man named Tario Anderson: “Officers said they saw Anderson walking on the sidewalk and tried him to question him. They said when they put a spotlight on Anderson, he put his hands in his pockets, started walking the other way and eventually started running from them. He was shocked with a Taser and arrested because he didn’t follow the officers’ commands.”Anderson is also African American, which adds another dimension to the story. In the wake of incidents in which African Americans had died at the hands of white police officers, one father wrote of his autistic son: “What if my son pulling back from a cop is seen as an act of aggression? What if a simple repetitive motion is mistaken for an attempt at physical confrontation? If a cop is yelling at my son and he doesn’t respond because he doesn’t understand, what’s stopping the cop from murdering my boy in cold blood?"
In North Miami, a police officer recently shot a behavior therapist who was trying to calm an autistic man on the streetDavid Ovalle reports at The Miami Herald:
The shooting renewed calls from advocates for the mentally ill and autistic for more federal funding to increase training for police, and for technology that can help locate people with disabilities or dementia who wander away from their caretakers.
“This is important and rewarding work, but it is also challenging, even on a good day, and requires incredible patience and dedication,” said Barbara Merrill, the CEO of the American Network of Community Options and Resources, a trade association for workers who help disabled people.
“Aggressive interactions with law enforcement who have not been trained to identify, support and assist individuals with disabilities or autism make a hard job even harder.”
In Miami-Dade, interactions between police officers and mentally ill and developmentally disabled people are frequent. The issue has not gone ignored — training for cops in dealing with both populations has been lauded thanks to the “Crisis Intervention Team” program pushed by Miami-Dade County Judge Steve Leifman.
The program became a greater priority for police departments in the mid-2000s after a string of high-profile shooting deaths involving mentally ill people.
In the past decade, more than 4,700 officers have undergone the crisis intervention training, which includes a class designed to help cops understand the challenges of dealing with autistic people.
The autism course is taught by two local police officers who themselves have autistic children, plus Teresa Becerra, the executive director of the Autism Society of Florida. Her 20-year-old son, Robert, plays a key role in helping officers learn and get accustomed to behaviors of severely autistic people.
“His presence alone has a deep and lasting impact on the officers,” she told the Miami Herald.
Although North Miami police send personnel to the training, it was unclear Thursday whether the officers involved in this week’s shooting had attended. They had not been named.

Saturday, July 23, 2016

More on the North Miami Incident

In The Politics of Autism, I discuss interactions between first responders and autistic people.  Police officers need training to respond appropriately.  When they do not, things get out of hand.
It would be hours before 60-year-old Gladys Soto learned the truth: Her son, Arnaldo Eliud Rios Soto, had wandered away from his North Miami group home. His behavior aide, a man Rios loved, had been shot by police as he desperately tried to warn them that Rios had autism, was not a danger to anyone, and was wielding a toy truck, not a gun. As Charles Kinsey lay on the ground, hands raised above him in a sign of abject submission, a bullet from a police sniper pierced his leg.
Rios, 26, was diagnosed with a complex and disabling form of autism as a small child. He is largely non-verbal, though he can use a handful of words — “police” and “blood” and “hate” are among them. He’s big and he’s tall, and all that bigness can be a danger when Rios loses his temper.

On Monday, Rios decided to remain home from a day program he usually attends. Kinsey stayed home, too, to supervise him. When Rios left the group home — his toy truck, which he clings to for comfort, in his hand — Kinsey followed him. We can’t prevent people from going out the door; they have rights,” said MACtown’s director, Clinton Bower. “All we can do is try to ensure their safety.”

After Kinsey was shot, the caregiver was rolled onto his belly and handcuffed — an image that badly exacerbated the public relations nightmare North Miami police faced. But Rios, too, was treated like a criminal, said both his mother and Bower.
For at least three hours, the young man remained handcuffed in the back of a police squad car. Soto’s church friend begged officers to see Rios, as did Bower. But officers kept Rios under wraps until about 9 p.m., Bower said.
Police told Bower that Rios “was acting loopy,” Bower said, adding Rios kept talking about Disney characters. “They clearly couldn’t see he was a person with autism, or another disability.”
Dietz, the family’s lawyer, said Rios’ three hours in a police car might have been nearly as traumatic as the shooting. “This is a person who calms himself by slapping his hands and rocking,” Dietz said. But he could do nothing as waves of anxiety cascaded over him in police custody.

Read more here:

Read more here:

Friday, July 22, 2016

An Incident in North Miami

In The Politics of Autism, I discuss interactions between first responders and autistic people.  Police officers need training to respond appropriately.  When they do not, things get out of hand.

Francisco Alvarado, Michael E. Miller and Mark Berman report at The Washington Post:
Authorities said Thursday that they were investigating a shooting Monday in which a police officer shot a man who had said his hands were empty and raised at the time.
While the shooting was not captured on camera, a recording showing moments before the gunshots depicted a man lying on his back on the ground, his hands in the air, while another man sits near him cross-legged.
“All he has is a toy truck in his hand,” Charles Kinsey, the man lying on his back, yells at two police officers standing behind telephone poles just a few dozen feet away on Northeast 14th Avenue. “That’s all it is. There is no need for guns.”
Police said they only learned later that Kinsey worked at a care facility and that the man sitting near him was autistic.
After the recording stopped, one of the officers fired three shots, hitting Kinsey at least once in one leg.
[The Post’s police shootings database]
“When it hit me, I’m like, I still got my hands in the air,” Kinsey, an African American, said in an interview from his hospital bed with WSVN TV.
Police have not said why the officer fired, although a police union representative said Thursday that the officer, who has not been identified and who has been placed on administrative leave, was aiming for the man with autism — apparently thinking he was armed — and was trying to protect Kinsey.

Thursday, July 21, 2016

IEP and Retaliation

These meetings can turn nasty, and many autism parents have “IEP horror stories.”  One parent told me that she tried to ease tensions by bringing cookies to the meeting.  The principal then shouted to his staff, “Nobody touch those cookies!”  Another parent writes of asking for a sensory diet, a personalized activity plan that helps the student stay focused (e.g., low noise levels for those with a sensitivity to sound).  “After just proclaiming she is extremely knowledgeable about Asperger’s Syndrome, from the mouth of a school psychologist after we suggested our son needed a sensory diet. `Our cafeteria does not have the ability to provide this.’” 
EducationAdmin Web Advisor reports:
The Hampton City Schools system in Virginia must make amends after the Department of Education’s Office for Civil Rights (OCR) determined that the school system had unlawfully retaliated against a parent by demanding that she be fired from her job for advocating on behalf of her daughter, a special needs student in one of the system’s elementary schools. The parent was fired by her employer, a contractor for Hampton City Schools, after the school system informed the contractor it did not want the parent working with its schools.
Prior to that adverse employment action, the parent had complained about the adequacy of her daughter’s Individualized Education Program (IEP). School officials contend that some of the parent’s demands were unreasonable, including requests to schedule IEP meetings outside of school and working hours. The student’s principal also alleged that the parent “verbally attacked” staff members at an IEP meeting and accused one staff member of a breach of confidentiality. However, the parent’s employer judged her work performance to be satisfactory, leaving OCR to conclude that the termination of her services was attributable to her advocacy on behalf of her child.
Such a retaliatory action, said OCR, violates the Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990, both of which prohibit discrimination against disabled individuals by public entities, including public education systems, and make it unlawful to retaliate against an individual for the purpose of interfering with any right or privilege secured by these laws.
To remedy its conduct, the Hampton City Schools agreed to take several corrective actions, including amending its policies to prohibit retaliation, posting notices of its anti-discrimination policies and complaint procedures, and providing training to school administrators on retaliation.
Read OCR findings letter

Wednesday, July 20, 2016

More Spending on Home and Community-Based Services

In The Politics of Autism, I discuss state Medicaid services for people with intellectual and developmental disabilities.

A report by Truven Health Analytics for the Center for Medicare & Medicaid Services finds that total federal and state Medicaid long-term services and supports (LTSS) spending was about $152 billion in federal fiscal year (FY) 2014, a 4.0 percent increase from the previous year.
The percentage of Medicaid LTSS attributable to HCBS [home and community-based services] continued to increase in Federal Fiscal Year (FY) 2014, one year after HCBS accounted for a majority of Medicaid expenditures for the first time. The percentage of total LTSS spent on home and community-based services (HCBS) increased from 51.3 percent in FY 2013 to 53.1 percent in FY 2014. The shifting balance was caused by a 7.7 increase in HCBS spending, from $74.9 billion to $80.6 billion. Institutional service  spending was flat, with only a 0.2 percent increase from $71.1 billion to $71.2 billion.
The percentage of LTSS expenditures for HCBS continued to vary across population groups. HCBS accounted for 75 percent of spending in programs targeting people with developmental disabilities, compared to 41 percent of expenditures for programs targeting other large population groups: older people or people with physical disabilities, and people with serious mental illness or serious emotional disturbance. HCBS spending for all three populations increased relative to institutional services in FY 2014, but the historical differences in HCBS spending across the groups remained.

Tuesday, July 19, 2016

Legislation on Special Needs Trusts

In The Politics of Autism, I discuss special needs trusts.

A July 14 release from Rep. Glenn "GT" Thompson (R-PA):
This week, the U.S. House Energy and Commerce Committee unanimously approved H.R. 670, the Special Needs Trust Fairness Act, which was introduced by U.S. Rep. Glenn ‘GT’ Thompson (PA-5). The legislation removes arbitrary legal barriers that prevent individuals with disabilities from independently creating Special Needs Trusts.

“Mr. Thompson is to be commended for the masterful way he has lined up bipartisan support for this important law to benefit persons with disabilities,” said Amos Goodall, of the State College based law firm Goodall & Yuchak, P.C. and public policy advocate for the National Association of Elder Law Attorneys (NAELA). “It is an example of his concern for persons who are less fortunate that has been the cornerstone of his activities throughout his career.”

Under current law, disabled individuals are required to have a legal guardian or the courts create a special needs trust on their behalf, regardless of whether or not they have the capacity to establish their own. This mandate can result in burdensome legal fees and extended wait periods in creating trusts—valuable tools that are often used to supplement daily living and care expenses when government benefits alone prove to be insufficient.

“I am pleased that the Energy and Commerce Committee took an important step toward correcting a legal inequity,” Thompson said. “This is a fundamental issue of equal protection under the law. We must safeguard the right of Americans living with disabilities to secure their future financial stability.”

Monday, July 18, 2016

Ari Ne'eman to Step Down

In 2006, 19-year-old Ari Ne’eman, who had a diagnosis of Asperger’s, cofounded the Autistic Self Advocacy Network (ASAN) in response to what members saw as the absence of autistic voices in policy debates on autism. As a motto, the group adopted a saying from the broader disability rights movement, “Nothing About Us Without Us.” ASAN gained national publicity in 2007, with a successful campaign against billboards by the NYU Child Study Center depicting autism as a kidnaper. The ads, said the group, stigmatized people with autism by suggesting that their condition was hopeless. Although billboards appeared only in New York City, the response was nationwide. ASAN used the Internet to join forces with other disability rights organizations and gather thousands of petition signatures.
At the beginning of 2017, in five months time, I will be passing the Presidency of ASAN on to Julia Bascom, the organization’s current Deputy Executive Director and leaving the ASAN staff to contribute to the disability rights movement in new ways. Since joining the organization in 2012, Julia has played a critical role in building ASAN’s leadership programs along with other important aspects of our advocacy work and community programming. She already plays a central role within ASAN’s ongoing work, and I am very confident that the organization will grow and prosper in new and interesting ways under her leadership.
I’m convinced that this is the best way to help ASAN take the next steps into the future. Every organization requires periodic changes in leadership, and I am excited to be handing ASAN over to an excellent successor who will continue to grow it in line with the values and energy that have built us into what we are today. I am looking forward to being a part of new projects and continuing to build our movement in other roles.
This transition has been long planned. Our board was notified at the beginning of this year, and I have worked closely with the ASAN senior staff to ensure a smooth transition will take place at the end of December. Over the next five months, we will continue to work to ensure that ASAN’s important work continues to thrive and grow. As I move on to new things, I will nonetheless remain a member of the ASAN board of directors.

Sunday, July 17, 2016


Reporting on Senate passage of Kevin and Avonte's Law, Samantha Finch offers writes at Parent Herald about wandering:
A 2015 study found that 27 percent of children with developmental disabilities such as autism wander away from safe locations annually. That same year, 31 people with autism died after wandering to unsafe environments, 1011 Now reported.

Another study published in 2012 by the American Academy of Pediatrics found that 24 percent of autistic children were in danger of drowning after going missing and 65 percent were vulnerable to traffic injuries and accidents. According to the National Center for Missing & Exploited Children, autistic children wander away when they get overly stimulated by sights, sounds, or other people's activities.

When this happens, the desire to escape propels autistic children to wander away to small or enclosed spaces. Another reason why they wander is because they are interested in a specific location such as bodies of water.

Saturday, July 16, 2016

An Incident in Burbank

In The Politics of Autism, I discuss interactions between first responders and autistic people.  Police officers need training to respond appropriately.  When they do not, things get out of hand.

A local family was outraged Friday after a 16-year-old boy with autism was tasered by police during a traffic stop in Burbank.
 Fighting back tears, a 16-year-old autistic teen waited to be booked on charges he assaulted a Burbank police officer during a violent encounter.
 "This has been a devastating experience seeing my child on the ground, being tased by a police officer...worst moment of my life," said mother Tawnya Nevarez.
It happened last Friday at the intersection of Hollywood Way and Burbank Boulevard.
The officer pulled Tawnya Nevarez over because her son, whom the family does not want to name, wasn't wearing a seat belt.
They said he became agitated during the stop, and his mother told the officer he was autistic. It ended with the teen being tasered and sent to the hospital.
 "There's no reason that a routine traffic stop with a 16-year-old autistic kid should ever end with that kid on the ground being tased, being pepper-sprayed and having a seizure," said the family's attorney, Areva Martin.
Police said the teen attacked the officer, who was wearing an audio recorder, hitting him in the head and body.

Friday, July 15, 2016

Kevin and Avonte's Law Passes Senate

The Politics of Autism discusses the problem of wandering, which is the topic of legislation before Congress.

John Nikodin reports at WABC-TV:
The Senate on Thursday unanimously approved a bipartisan bill that aims to safeguard individuals with autism and other conditions.

Originally introduced last March by Sen. Chuck Schumer, D-NY, Sen. Thom Tillis, R-NC, and Sen. Chuck Grassley, R-IA, the bill is designed to improve autism education and training to proactively prevent wandering and to help locate individuals with the condition when needed.

The bill, known as Kevin and Avonte's Law, was named in honor of 14-year-old Avonte Oquendo, who wandered from his school in Queens and drowned in the East River in 2014, and 9-year-old Kevin Curtis Willis who drowned in the Raccoon River in Iowa in 2008.

Before the bill becomes law, the House of Representatives will have to vote to approve it, followed by the President signing it into law.

Thursday, July 14, 2016

Information and Choices

In The Politics of Autism, I describe the difficulties of finding reliable information:
One problem is that a good deal of the solid research about autism lies in academic journals behind an Internet paywall, open only to people who have a university library card or can afford the journals’ exorbitant prices ($35 or more per article). Says neuroscientist Sophia Colamarino: “In today’s information age, where essentially anything said by anyone can be made accessible within a matter of moments, it is unfortunate that families have easy access to all BUT the most scientifically valid information, that which can be found in scientifically reviewed research literature.” NIH and Autism Speaks have tried to remedy this situation by requiring its research grant recipients to put any resulting peer-reviewed research papers on the PubMed Central online archive, but this policy affects only a fraction of the literature on autism.
While we understand why complementary and alternative treatment options are compelling, we cannot in good conscience endorse their use. Ultimately, quality, evidence-based interventions will be most effective for helping their child. Thus, we need to bridge the gap by increasing efforts to make those options more accessible to families of all financial means and geographic locations.
Further, since complementary and alternative methods are growing in popularity, to better help families make the right decisions, clinicians need to create an open, non-judgmental space that includes a dialogue about these different paths of intervention. They cannot dismiss complementary and alternative ones out of hand or make parents feel bad for considering or using them. They do need to respectfully discuss the risks and benefits of possible treatments, suggest what may be most effective, and then partner with parents to monitor their child’s progress.
Researchers and clinicians also can help parents and caregivers make more informed decisions by making their study findings more accessible, both on- and offline. Of course, this is easier to do when clinicians and researchers, like us, work together. For instance, Dr. Roberts and her colleague, Dr. Kaiser, at Vanderbilt University studied early interventions for young children with language delays and found preliminary evidence supporting the benefits of caregiver involvement in the children’s therapies. Now this research informs how Dr. Bauer counsels the parents of children in her clinics. When they inquire if they should be involved in their children’s therapies, she can point to this research to say that there is evidence that it can be beneficial for them to be part of it.

Wednesday, July 13, 2016

Autism Quackery in the UK

In The Politics of Autism, I discuss autism quackery.

At The Guardian, Dr. Frances Ryan writes about Emma Dalmayne's campaign against a risky "cure."
Dalmayne, a stay-at-home mother and autism campaigner from London, is describing Miracle Mineral Solution (MMS), a “supplement” being sold online to parents as a “cure” for their autistic children. But MMS is essentially bleach. It is 28% sodium chlorite, and when used as instructed, generates chlorine dioxide – a potent bleach that’s used to strip textiles and for industrial water treatment.
It is highly dangerous to ingest. Taken directly, MMS can cause severe nausea, vomiting and diarrhoea, damage to the gut and red blood cells, respiratory problems, and can be fatal. “MMS can cause serious damage to health and in some cases even death,” says a spokeswoman for the Food Standards Agency (FSA). “Anyone who has bought these products is advised to throw them away.”
Dalmayne – who has two children with autism and three others under assessment for diagnosis, and has autism herself – first became aware of the fake cures in 2014, after setting up an autism support group online. “Parents would ask me, have you seen this? Isn’t it awful? Or, does it work?” she says. Over the past 18 months, the 40-year-old has found dozens of websites selling MMS under the guise of curing autism, as well as GcMAF, an unlicensed product derived from blood plasma that claims to treat autism as well as cancer and HIV.
There are no figures on how widespread the manufacture and use of fake autism cures are in the UK, but the FSA says local authorities have made it aware of a number of cases where MMS has been marketed for sale. And the Medicines and Healthcare products Regulatory Agency confirms it is investigating GcMAF products after it found manufacturing conditions were “unacceptable” and the material “unsuitable for human use”. Last year, more than 10,000 vials of GcMAF were seized at a production site in Milton, Cambridgeshire, with the product being sold on various European websites that UK citizens may have bought from.

Tuesday, July 12, 2016

How Much Good Do Insurance Mandates Accomplish?

In The Politics of Autism, I explain that state insurance mandates do not have the impact that many people would like. For one thing, they do not apply to self-funded plans.
Another limitation of the state mandates stems from the Affordable Care Act. The law seeks to discourage state mandates that exceed its “essential health benefits” requirements. If a state has passed a mandate since 2011 that applies to individual and small group plans, it has to pick up the additional premium cost. In about half of the states, autism coverage is part of essential health benefits, usually because the state mandated coverage before 2012 and thus it became part of that state's “benchmark” plan. Says Lorri Unumb: “For the most part, the states that have passed autism mandates post Dec. 31, 2011, have excluded ACA-compliant plans from the mandate.”
The details of insurance mandates vary from state to state. Many have age limits and caps on what insurers have to pay. Because the Affordable Care Act forbids annual dollar limits on essential health benefits, insurers in these states may be able to convert these limits into non-dollar limits (such as a cap on the number of ABA sessions each year). Unumb writes of a visual aid that she and her husband designed: “We set to work designing a double-wheel that would show the 50 states on the big outer wheel and the various types of health insurance on the inner wheel. Only if you’re lucky enough while spinning both wheels do you get coverage for the treatments your child needs.”
Kimberly Leonard reports at US News:
State laws that require heath insurance companies to cover autism treatment still aren't reaching the vast majority of children with the disorder, suggests a study published Monday in JAMA Pediatrics.

The study found that in states without insurance mandates, the treated prevalence of autism was 1.6 per 1,000 children, compared with 1.8 per 1,000 children in states with insurance mandates. While the difference represents an increase in treated prevalence of 12.7 percent, the higher total still makes up only a small fraction of the Centers for Disease Control and Prevention's estimate of 15 in 1,000 children who have autism.

Still, it is difficult to tell precisely how widespread the problem is. Because there are so many different types of autism, some children don't need regular care. The findings also could help dismantle the argument by insurance companies that state mandates lead to a spike in autism diagnoses.

David Mandell, lead author of the study and director of the Center for Mental Health Policy and Services Research at Penn Medicine, says it's encouraging to see any movement at all. Even though the proportion of those receiving treatment will not reach the same number as those who have autism, it should probably be higher, he says.