Autistic People and First Responders, School Employees, and Healthcare Professionals

In The Politics of Autism, I discuss interactions between first responders and autistic people.  Some jurisdictions allow autistic drivers to ask for a blue envelope to disclose the driver's diagnosis in case of an accident or traffic stop.  Others have ID cards.

Lauren Jones at The Henrico [VA] Citizen:

A bill aimed at enhancing professional development opportunities for school employees and healthcare professionals working with students with autism spectrum disorder passed the Senate and House unanimously.

SB1293 , proposed by Sen. William Stanley, R-Franklin County, directs the Board of Education to provide guidance and optional yearly training for staff who regularly interact with students, helping them communicate with and support those with autism.

Stanley emphasized the need for the bill, noting a lack of training among educators and healthcare professionals when working with autistic students.

Christine Sloan at CBS New York:

New Jersey residents on the autism spectrum can soon apply for a designation on their driver's license or ID to help them with interactions with police.

The notation will appear as the number 5 in the "Restrictions" section of an ID.

They'll also be issued a Motor Vehicle Commission "pink card" describing their diagnosis, which must be carried with the license or ID card.

"So law enforcement, when they interact with them, they know how to treat them with respect and make sure that everyone can be treated safely," New Jersey Attorney General Matthew Platkin said.

The card includes a designation section, with boxes to check such as "autism spectrum," "communication disorder" and "disorder hearing aid." It also has a restriction section, with boxes such as "hearing impaired," "mechanical aid," "prosthetic aid" and more.

 KNXV-TV

On Saturday, cops went to the Greater Phoenix Autism Society to bridge the gap between individuals with autism and local law enforcement.

Emily Iland is an autism advocate who leads similar educational initiatives across the country and helped make the "Be Safe" movie which shows different types of interactions people can have with law enforcement.

"It’s hard for people with autism to relate with the police because of the communication and social difficulties that are part of autism,” Iland said.

Grant Kirwan was a participant in the “Be Safe” program, getting paired up with a cop from Gilbert.

“My journey with autism has been a rollercoaster. I, for example, have struggled with loud noises,” Kirwan said.

Brick Township

 In The Politics of Autism, I discuss the congressional role in the issue.

Jerry Carino at The Asbury Park Press:

In the mid-1990s, Brick Township residents Bobbie and Billy Gallagher were desperate to find help for their two young children with autism.

“I had started attending a parents’ support group, and it seemed like there were a lot of parents sitting around the table whose children had been newly diagnosed,” Bobbie Gallagher recalled. “So I sent out a survey to parents in the town asking if anybody had a child with autism, because it seemed like there were so many of them.”

Sending out a survey was a lot harder back then, at the dawn of the electronic age.

“We got zero help from the school district with that survey,” Billy Gallagher said. “Although the school district sent home who to vote for in the school-board elections – that made it into kids’ backpacks – our survey would not. But we found the bus drivers and the aides on the buses helpful in distributing it.”

Between that, the bulletin board in the Brick branch of the Ocean County Library, and a small ad in a weekly newspaper, the Gallaghers got enough surveys out to produce eye-opening feedback – 45 Brick residents answered in the affirmative.

New Jersey’s department of health declined to act on the survey, but it got the attention of the Gallaghers’ congressman, Republican Chris Smith, who met with them in September of 1997.

“He said the information we gathered was important and he would take this to the next level,” Bobbie Gallagher said.

In 2000, aided by a public push from NFL quarterbacks Dan Marino and Doug Flutie – both of whom have children with autism – Smith’s bill for autism research became codified in federal law. Those provisions have expanded over a quarter-century, and last month what has become known as the Autism CARES Act was reauthorized by Congress and signed by President Joe Biden. The law funds $1.95 billion over five years for autism research and intervention programs at the National Institutes of Health, Centers for Disease Control, and the Health Resources and Services Administration.

 

Blue Envelopes in New Jersey

 In The Politics of Autism, I discuss interactions between first responders and autistic people.  Some jurisdictions allow autistic drivers to ask for a blue envelope to disclose the driver's diagnosis in case of an accident or traffic stop.  Others have ID cards.

 Mat Fagan and Gene Myers at NorthJersey.com:

[M]ore and more police departments and other law enforcement agencies throughout the state are adopting New Jersey's Blue Envelope Program. The program's goal is to inform officers as fast as possible that the driver they have stopped has a developmental disorder, which may explain their unusual behavior.

Those drivers who participate in the program will get a blue envelope they can place on their vehicle's sun visor or hand over to law enforcement officers during a stop. The envelope holds their essential documents, including license, registration and a contact card. Officers are trained to recognize the blue envelope and its meaning.

Englewood’s Christopher Gagliardi, 43, who has autism, said the bright red and blue lights atop police cars are scary. He's hoping the program helps to ensure that there's "no brutality or any kind of abuse against people with special needs like myself and especially on the autism spectrum disorder that are affected by the terror and fear of police officers."

Once the driver shows or hands over the blue envelope, it alerts the officers to the situation, and they then are able to put training and guidance on best practices into effect. The training will have covered how best to interact and communicate with drivers with autism, said Passaic County Prosecutor Camelia Valdes.

...

A new study found that a third of teens who have autism without intellectual disability earn a driver's license. Nearly 90% of them do so within two years of getting their learner’s permit.

Housing for Autistic People

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

David Chiu at People:

A New Jersey town will be the future site for a one-of-a-kind residential housing complex for adults with autism.

The Red Bank zoning board recently approved a plan last month to construct and develop an apartment building for neurodiverse adults, the Two River Times reported, which would be the first one ever in the Garden State.

According to a press release, the THRIVE Red Bank project will consist of 32 one-bedroom apartments to encourage independent living for adults with autism. The building’s amenities will include a teaching kitchen, workout spaces and socialization areas.

Karen Fluharty, a mother of an adult son with autism, is one of the people who spearheaded THRIVE Red Bank through Parents With A Plan, a nonprofit organization she co-founded whose mission is "to develop a model community for adults with autism and other related developmental disorders."

Prevalence and Underdiagnosis in NY-NJ Metro

In The Politics of Autism, I discuss evaluation, diagnosis, and the uncertainty of prevalence estimates.

Walter Zahorodny and colleagues have an article at the Journal of Autism and Developmental Disorders: "Prevalence and Characteristics of Adolescents with Autism Spectrum Disorder in the New York-New Jersey Metropolitan AreaBrief Reportith Autism Spectrum Disorder in the New York-New Jersey Metropolitan Area."

Abstract

Purpose

Almost all epidemiologic studies estimating autism spectrum disorder (ASD) prevalence have focused on school-age children. This study provides the first population-based data on the prevalence and expression of ASD among adolescents in a large US metropolitan region.

Methods

Active multiple source ASD surveillance of adolescents aged 16-years was conducted according to the Autism and Developmental Disabilities Monitoring (ADDM) Network method in a four-county New Jersey metropolitan region. Prevalence estimates are provided, characteristics are described and comparison of the distribution and characteristics of ASD is offered for this cohort, at 8 and 16-years.

Results

ASD prevalence was 17.7 per 1000 (95% CI: 16.3–19.2)]. One-in-55 males and one in 172 females were identified with ASD. High-SES was positively associated with ASD and White adolescents had higher ASD prevalence (22.2 per 1000) than Hispanic adolescents (13.1 per 1000). One in four study-confirmed individuals with ASD did not have an ASD diagnosis. A majority of ASD adolescents (58.8%) had a co-occurring neuropsychiatric disorder. White and High-SES individuals had greater likelihood of co-occurring disorder. The demographic distribution and functional profile of ASD was similar in this cohort at 8 and 16-years.

Conclusion

Approximately one-in-55 adolescents in our area had ASD, in 2014, and one-in-4 16-year-olds with ASD was not diagnosed. A majority (3-in-5) of the adolescents with ASD had a co-occurring neuropsychiatric disorder. ASD under-identification and the high frequency of co-disorders in adolescents with ASD pose significant challenges to care and support.

Prevalence and Inequality

In The Politics of Autism, I discuss evaluation, diagnosis, and the uncertainty of prevalence estimates.

 Aria Bendix at NBC:

Autism rates tripled among children in the New York and New Jersey metropolitan area from 2000 to 2016, according to a study published Thursday in the journal Pediatrics.

The authors, a team from Rutgers University, calculated the trend by analyzing Centers for Disease Control and Prevention estimates of the number of children who've been identified as having autism spectrum disorder by age 8.

Although there is no medical test for autism, the CDC has established a network of 17 sites across the country that estimate autism rates based on a combination of formal medical diagnoses and records from schools and health care providers.

Nationally, the rise in autism rates has been similar to the trend in New York and New Jersey, according to a 2021 CDC report. One in 54 children had been diagnosed with autism by age 8 in 2016, compared to 1 in 150 in 2000.

Advances in diagnostic capabilities and greater understanding and awareness of autism spectrum disorder seem to be largely driving the increase, the Rutgers researchers said. But there’s probably more to the story: Genetic factors, and perhaps some environmental ones, too, might also be contributing to the trend.

Precisely what those other factors are is still unknown, but researchers are at least clear on one fact: Autism has nothing to do with vaccines.

"We know for sure, for so many years now, that vaccines don’t cause autism," said Santhosh Girirajan, an associate professor at Pennsylvania State University who studies the genetic underpinnings of neurodevelopmental disorders and wasn't involved in the new study.

A release from Rutgers:

“One of the assumptions about ASD is that it occurs alongside intellectual disabilities,” said Josephine Shenouda, an adjunct professor at the Rutgers School of Public Health and lead author of the study published in the journal Pediatrics. “This claim was supported by older studies suggesting that up to 75 percent of children with autism also have intellectual disability.”

“What our paper shows is that this assumption is not true,” Shenouda said. “In fact, in this study, two-in-three children with autism had no intellectual disability whatsoever.”

Using biannual data from the New Jersey Autism Study, researchers identified 4,661 8-year-olds with ASD in four New Jersey counties (Essex, Hudson, Ocean and Union) during the study period. Of these, 1,505 (32.3 percent) had an intellectual disability; 2,764 (59.3 percent) did not.

Subsequent analysis found that rates of ASD co-occurring with intellectual disability increased two-fold between 2000 and 2016 – from 2.9 per 1,000 to 7.3 per 1,000. Rates of ASD with no intellectual disability jumped five-fold, from 3.8 per 1,000 to 18.9 per 1,000.

Shenouda said there may be explanations for the observed increases, though more research is needed to specify the precise causes.

“Better awareness of and testing for ASD does play a role,” said Walter Zahorodny, associate professor at the Rutgers New Jersey Medical School and senior author on the study. “But the fact that we saw a 500 percent increase in autism among kids without any intellectual disabilities – children we know are falling through the cracks – suggests that something else is also driving the surge.”

ASD prevalence has been shown to be associated with race and socioeconomic status. The Rutgers study identified that Black children with ASD and no intellectual disabilities were 30 percent less likely to be identified compared with white children, while kids living in affluent areas were 80 percent more likely to be identified with ASD and no intellectual disabilities compared with children in underserved areas.

Early Intervention

 In The Politics of Autism, I discuss evaluation, diagnosis, and early intervention.

A release from Rutgers:

Despite a federal mandate requiring access to early intervention programs (EIP) for children with disabilities, fewer than half of autistic children in four New Jersey counties received services before 36 months of age, according to a Rutgers study.

Income and race-based disparities were significant obstacles to accessing EIP support, researchers found.

“For infants and toddlers on the autism spectrum, early intervention is important for improved later-life outcomes,” said Josephine Shenouda,an adjunct professor at the Rutgers School of Public Health and lead author of the study published in JAMA Pediatrics. “We wanted to understand the level of early intervention participation among children with autism.”

In the U.S., access to EIP for young children is mandated by law as part of the Individuals with Disabilities Education Act. However, the extent to which children with autism participate in early intervention programs had not previously been measured.

Shenouda and her colleagues analyzed data collected between 2006 and 2016 by the New Jersey Autism Study, an autism spectrum disorder (ASD) monitoring system developed and maintained by researchers at Rutgers New Jersey Medical School.

By analyzing the medical and special education records of 23,441 children in Essex, Hudson, Ocean and Union counties, the researchers identified 4,050 8-year-olds with autism spectrum disorder. Fewer than half (1,887; 47 percent) had received EIP services.

The researchers linked cases to data representing different indicators of wealth, including median household income, and found that ASD children residing in affluent areas were 80 percent more likely to receive EIP services than children residing in disadvantaged areas. Black and Hispanic children also were less likely to participate in EIP.

While the study was conducted in New Jersey metropolitan areas, Shenouda said the findings have important implications nationwide.

“New Jersey is known as an epicenter of autism, but it also has many resources for autism detection and treatment,” she said. “If only half of the children with autism in our study area are getting early interventions, chances are the disparities are even more pronounced in other communities and regions with fewer services.”

Shenouda said there may be multiple reasons why children from disadvantaged and minority areas aren’t enrolled in EIP, such as lower rates of ASD screening or less likely follow-through with recommendations. In either case, focused outreach can help increase EIP referrals and participation.

Shenouda added: “With autism prevalence estimates approaching 7 percent in some areas, we need universal autism screening between 18 and 36 months and enhanced support for the early intervention system. These actions will reduce economic and race-based disparities in autism identification and care.”

ID in NJ

In The Politics of Autism, I write:

[M]any police departments have trained officers and other first responders how to spot signs of autism and respond accordingly. Some organizations have also published identification cards that ASD adults can carry in order to defuse potential conflicts. Virginia provides for an autism designation on driver licenses and other state-issued identification cards. Once again, however, the dilemma of difference comes into play. One autistic Virginian worries: “Great, so if I get into an accident, who’s the cop going to believe, the guy with the autistic label or the guy without it?” Clinical psychologist Michael Oberschneider is concerned about the understanding level of first responders: “I think many people still think of Rain Man or, more recently, the Sandy Hook Shooter, when they think of autism even though very few people on the autistic spectrum are savants or are homicidal and dangerous.”

 From New Jersey Senate Democrats:

The Senate today approved bipartisan legislation that would foster greater understanding and communication between law enforcement and the communicative disabilities community by requiring the Motor Vehicle Commission to allow the holder of a driver’s license or non-driver identification card to indicate that the person has been diagnosed with an autism spectrum disorder or communication disorder.

The bill, sponsored by Senator Nellie Pou and Senator Kristen Corrado, would require the MVC to indicate the diagnosis by notating the information on the person’s driver’s license or non-driver identification card under the column designated for restrictions. The goal is to make it easier for the person with the disability to more easily communicate with any law enforcement officer they may encounter and hopefully serve to limit the chances that an ordinary interaction, such as a routine traffic stop, will escalate into a more fraught or even violent confrontation. 

“Too often, in recent years, some interactions between law enforcement and individuals with communicative disabilities have led to negative outcomes, simply because of a communication barrier. This legislation is designed to be a preventative measure that will help improve that communication and minimize the chance of escalation or a negative incident,” said Senator Pou (D-Bergen/Passaic). 

The legislation, S-849, is aimed at protecting members of the communications disability community and also to help law enforcement better understand and communicate with them. 

The bill was approved by the Senate by a vote of 39-0.

Autism Prevalence in New Jersey Communities

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

A release from Rutgers University:

In some New Jersey communities up to 8 percent of children have autism spectrum disorder (ASD) — more than triple the national average, according to a Rutgers study.

Funded by the Centers for Disease Control and Prevention the study appears in the journal Autism Research.

Researchers analyzed data from the Autism and Developmental Disabilities Monitoring Network — a group of programs funded by CDC to estimate the number of children with autism — looking at 5,453 children in public school districts in Essex, Hudson and Union counties who were 8 years old in 2016.

They discovered an estimated ASD prevalence of 36 children per 1,000 in most regions, but greater than 70 per 1,000 in multiple school districts in the state. The national average of children with ASD is 2 percent.

“When we focused on the district level, we recognized that many communities in our region —approximately one in five, including some of the largest — had ASD rates between 5 percent and 10 percent,” said study co-author Josephine Shenouda, a project coordinator at Rutgers New Jersey Medical School. “These variations may reflect differences in use of services or access to care. Larger districts may provide more services from a greater number of professionals or have additional resources for detection or care of ASD. It is also possible that parents of children with learning or developmental disorders relocate from small districts to large districts to maximize their children’s educational attainment.”

The study also found that one in five school districts had ASD estimates greater than 5 percent and that Hispanic children were less likely to be identified with ASD, compared to white and Black peers, indicating a significant disparity in identification.

ASD prevalence was approximately 5 percent in Newark, the state’s largest school district. Tom’s River, which is the state’s largest suburban school district, had the highest ASD prevalence (7.3 percent), with a 12 percent prevalence among boys. “We found that mid-socioeconomic status communities, like Toms River, had the highest ASD rates, which was contrary to expectation because in earlier U.S. studies ASD rates were highest in high- socioeconomic status communities,” said Shenouda.

“The study suggests that effective educational and health planning should be informed by community and county level estimates and data as well as by state and national averages,” said coauthor Walter Zahorodny, an associate professor of pediatrics at Rutgers New Jersey Medical School. “It also shows that additional effort is needed to reduce disparities in the identification of ASD in the Hispanic community, including expansion of ASD screening of toddler-age children.”

Other Rutgers authors include Emily Barrett, Amy L. Davidow, William Halperin and Vincent Silenzio.

Prevalence in New Jersey

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

Lindy Washburn at The Asbury Park Press:

New Jersey's rate of autism among children has always been high, but some of the largest school districts — including Toms River, Newark, Jersey City and Elizabeth — have rates even higher than the state average.

And in Toms River, the state's largest suburban school district, the autism rate is more than twice the state average, with one in 14 8-year-olds in the district on the autism spectrum, according to the first study to compare a cross-section of districts in the state.

Toms River’s autism rate is likely a harbinger of the rate all New Jersey districts will see soon, the study’s co-author said. In nearly all the 74 districts studied, the research showed a steady increase over time in the rate of students with autism.

“It feels like some kind of science fiction,” said Walter Zahorodny, co-author of the study and an associate professor of pediatrics at Rutgers New Jersey Medical School, of the data he presents to educational and parent groups. To say that 7% of 8-year-olds in one school district — and 5% of 8-year-old boys statewide — have autism is shocking, he added, “but in reality, this is true. And it can’t be explained.”

... 

In Toms River and Ocean County, “The level of services is superior, so all these kids are coming to attention,” said Zahorodny. He suggested that access to specialists, such as those at a branch of Children’s Specialized Hospital in Toms River, and school systems where the staff is familiar with autism, make it easier to identify nearly all the children with autism.

 

New Jersey Driver License Bill

 

In The Politics of Autism, I discuss interactions between police and autistic people.  Sometimes they occur on the road.  A number of ASD people drive cars.

Jerry Carino at The Asbury Park Press:

In 2019, a 22-year-old Virginia driver with autism was sentenced to 10 years in prison for his involvement in a car accident. Due to a communication breakdown at the scene, police — who were unaware of driver Matthew Rushin’s autism — determined he intentionally caused the crash.

Rushin later was pardoned by Virginia’s governor, but the case left a deep impression on Marlboro’s Deb Fisher. Her son Jay has autism, functions well enough to drive and has experience with a traumatic misunderstanding.

“That age was coming up when Jay’s going to start driving,” she said, “and I was really nervous about his independence as far as driving and what would happen if he were to be pulled over and in any kind of stressful situation.”

In late 2019 she caught wind of a New York bill that provided a simple solution: a voluntary notation on a driver’s license that informs police of a person’s autism.

“I thought, what a great idea,” Fisher said.

Thus began a campaign of letter writing and phone calls. A year and a half later, a similar bill is on track to become law in New Jersey. The bill, S-741 in the state Senate and A-3191 in the Assembly, permits people diagnosed with autism or a communication disability to voluntarily make a notation of it on their driver’s license and in the motor vehicle commission’s registry, and establishes a program to train law enforcement officers in these kinds of interactions.

It has cleared the transportation committees with bipartisan support and could get sent to Gov. Phil Murphy’s desk sometime this summer.

After the Cliff

In The Politics of Autism, I write:

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.

 Jerry Carino at The Asbury Park Press writes about the cliff.

A bold new project seeks to change that. The Monmouth Ocean Foundation for Children, a nonprofit with a track record of helping special-needs youth, is launching The Achieve Academy for Adults with Autism.
...

The cliff was an emerging problem long before the pandemic, as a generation of young adults with autism moved into a post-school world unequipped to help them.

“All of a sudden parents are left to fumble through a confusing maze of, ‘What do I do with my adult who is disabled?’” said Tara Beams, a Monmouth Ocean Foundation for Children board member and veteran special-needs educator. “Our goal is to get our autistic adults working. Some of them may be able to independently work at some point. Some of them may be able to work with support, maybe with an aide with them. Some may be able to work part-time but not necessarily full-time because they need other services.”

It’s doable. One shining example is No Limits Café in Middletown, which is staffed almost entirely by special-needs adults. Beams and her colleagues have contacts in various businesses, from Staples to T.J. Maxx, that will provide opportunities to those who are ready. See the video at the top of this story to see how No Limits Café works.

Autism, Education, and the Pandemic

 In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all. Providing education, social services, and therapies is proving to be very difficult.

Mary Beth Gilliland at South Jersey Times:

I work as a family advocate for a nonprofit agency in South Jersey. Of the dozens of families on my caseload, those with children on the autism spectrum have been impacted by the virus most acutely. By a landslide.

You see, the children with autism who I’m most concerned about, simply cannot access their education virtually. Let me say it louder for the people in the back: THESE CHILDREN CAN NOT LEARN THROUGH A COMPUTER SCREEN. Period.

Further, the assault of virtual learning has caused such extreme agitation that it’s leading to aggression. There are children banging their heads against keyboards. Others are attacking their parents-turned-teachers, leaving bruises and bald spots behind. These families are in crisis. The inability of schools to keep their doors open is to blame.

Sadly, regression in academic and functional skills has been just as catastrophic. For autism families, even tiny educational victories are hard-earned. Watching skills that took years to acquire vanish in a puff of pandemic smoke is the tragic reality.
...

The critical distinction here is that other children can learn virtually. Children with much higher levels of need, including many of those on the autism spectrum, cannot. These children are not receiving an appropriate education as mandated by the Individuals with Disabilities Education Act (IDEA), the federal special education law of the land.

Hispanic Students and Private Placement

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act.

Where the district’s placement offer of a free appropriate public education (FAPE) in the least restrictive environment (LRE) is inappropriate a private school placement may be necessary and the district has to pay.

Ashley Okwuosa and Sharon Lurye of The Teacher Project at USA Today:

Nationally, Hispanic students are consistently the most underrepresented group in terms of accessing private placement. In 2019, the Teacher Project surveyed all 50 states for data on students placed at private special education schools at the public’s expense. Of the 15 states where demographic data was available, Hispanic students were significantly underrepresented in 13 of them. In Texas and California, Hispanic students make up half of the special education population but 29% and 36% of students in private placement, respectively. In Massachusetts, Hispanic students comprise nearly a quarter of the special education population but only 14% of those receiving private placement.

In New Jersey, where the number of Hispanic students has grown rapidly in many communities, the statewide gap is smaller, but that masks stark disparities at the county level. In Camden, half of special education students are Hispanic compared with 15% of those receiving private placement. In Ocean County, one-fifth of special education students are Hispanic compared with only 2% in private placement.

Two main factors cause the gaps: Parents with limited English struggle to navigate their way through a bureaucratic, technical and jargon-laden process – if they even hear about private placement. And very few private schools that serve children with special needs have language support programs.

“Families have to choose between English-as-a-second-language services and special education services,” said Jennifer Rosen Valverde, a professor at Rutgers Law School who focuses on special education.

This became even clearer as the COVID-19 pandemic upended education. Remote learning made it next to impossible for many parents to find special education and language support for their children.

Rutgers Helps Autistic Adults During Coronavirus

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all.  Providing education is proving to be very difficult.

A release from Rutgers University:

The COVID-19 pandemic has upended work and school schedules for millions across the country.

While new distance learning and working arrangements are aggravating and inconvenient to many, to those with Autism Spectrum Disorder, disruptions in daily routines can trigger problematic – even dangerous – behaviors, said James Maraventano, who directs Supporting Community Access through Leisure and Employment (SCALE) at Rutgers Center for Adult Autism Services (RCAAS).

“A lot of our participants and many people with autism thrive on schedules and really require consistency within their program in order to help them understand what’s expected of them,” said Maraventano. “Because of their behavioral rigidity, any deviation from those routines could evoke a lot of problem behavior and challenges for them and their families.”

On World Autism Awareness Day, a day to celebrate neurodiversity and call for wider efforts in making the world a better place for all people with autism, RCAAS announces plans to offer Remote Supports Services (RSS) to its community-based SCALE program participants, their families and College Support Program (CSP) students through individualized plans for activities and skill-building via telehealth.

“While these are very trying times that often require us to focus on taking things day-by-day, the RCAAS is committed to do everything in our power to ensure that our team, our participants, our families, and the community as a whole have the resources that we need to weather this storm and get back to doing what we do best,” said RCAAS Executive Director Christopher J. Manente.

RCAAS, established in 2016, serves adults with autism by providing meaningful, paid employment and integration into the Rutgers community. Last year, the center broke ground on a new facility that will include vocational and life skills teaching areas, high-tech meeting rooms and amenities intended to provide a welcoming environment for program participants and other members of the surrounding community, including Rutgers students, faculty and staff.

To help bridge the gap caused by shelter-in-place orders, SCALE’s new remote instruction will continue to provide training related to skills that can help participants live as functionally independent as possible. Currently, there are 12 participants enrolled in the SCALE program. Six families have signed their adult children up for this new individualized telehealth program.

“We sent needs assessment surveys to parents to find out the areas they feel their adult children would benefit from,” said Maraventano.

The goal is to work with each participant on their personalized training plans during hourlong sessions once or twice a week via an online platform. Training areas can focus on building safety and awareness, selfcare, skills for daily living and vocational skills. Each instructor will send families weekly email updates with tips for reinforcing their child’s individualized training.

Additionally, RCAAS will produce a weekly newsletter to offer suggestions for routines, skill acquisition programming, and/or problem behavior intervention, said Manente. ​The newsletter, which is available to the general public, will also provide resources related to accessing remote social opportunities for individuals with autism and their families.

“We are hoping this newsletter has national – even global – reach so we can offer more families access to quality, evidenced-based resources that we utilize to inform our program and instruction at RCAAS,” said Maraventano.

To sign up for the new RCAAS newsletter, email Maraventano: jmara@rcaas.rutgers.edu.

Police and Autistic People

In The Politics of Autism, I discuss interactions between police and autistic people.  Sometimes they occur on the road.  A number of ASD people drive cars.  Some states have actual or proposed programs  for voluntary identification.

Michele C. Hollow at NYT:

Parents of Autistic Children, [is] a nonprofit based in New Jersey that provides training for parents and educators on how to teach children with autism to respond to people in uniform. The group also hosts workshops for police officers and other officials on how to interact with people with special needs. To date, they’ve trained more than 70,000 police officers, firefighters and ambulance squads in New Jersey.
...

The tendency of many people on the autism spectrum to wander can lead to encounters with the police, but Wendy Fournier, president of the National Autism Association, said there are two distinct categories, wandering and elopement, though they are often used interchangeably.

Wandering, she said, is more purposeful and usually happens between ages 4 and 7. “That child will have it in his head that he wants to go swimming or to the park,” she said. “It’s what he wants to do regardless of the safety issues, which can be crossing a busy street without looking so he can get to his destination. It’s hard to stop him.”
In elopement, a child may bolt because of an overwhelming situation such as being around large crowds.

The association has two free downloadable programs with tools to address these issues. The Big Red Safety Box covers wandering and elopement, and the Meet the Police program teaches parents of children on the autism spectrum and children with autism how to interact with the police.

According to a 2017 study from the A.J. Drexel Autism Institute at Drexel University, an estimated one in five teenagers with autism was stopped and questioned by the police before age 21, and 5 percent were arrested. And according to research at the Children’s Hospital of Philadelphia, people with disabilities, including those on the autism spectrum, are five times more likely to be incarcerated than people in the general population, and “civilian injuries and fatalities during police interactions are disproportionately common among this population.”

How Antivaxxers Won in New Jersey

In The Politics of Autism, I look at the discredited notion that vaccines cause autism. Twitter, Facebook, and other social media platforms have helped spread this dangerous myth. Measles can kill.

 Tracey Tully, Sharon Otterman and Jan Hoffman at NYT tell how antivaxxers blocked a bill to end religious exemptions from school immunization requirements.

An influential ultra-Orthodox Jewish organization that had remained largely silent as the New York bill was being debated deliberately pivoted, opting to vocally oppose the New Jersey legislation on grounds of religious freedom.

Grass-root parent groups successfully leveraged social media and conservative talk radio in their effort to convince most Republican leaders to line up against the bill. A Facebook page named Occupy Trenton urged parents to converge at the State House. And, in the final week of debate, appearances by a Kennedy scion and a contrarian filmmaker helped fuel a libertarian argument that parents, not government, should control their children’s health care.

The intense protest left two Democratic senators with cold feet that no degree of political cajoling — or a private question-and-answer session for lawmakers with three pediatricians from the state chapter of the American Academy of Pediatrics — could thaw.

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The bill passed last month in the Assembly. But lawmakers who supported the legislation also may have made a political miscalculation when they introduced an amendment that excluded private schools to win the vote of a Republican needed to achieve a majority in the Senate. Instead, opponents, including an African-American Democratic assemblyman, argued that this amounted to segregation that would allow only the affluent a choice about vaccination.

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“Technology is a huge piece of it,” said Sue Collins, a founder of the New Jersey Coalition for Vaccine Choice. “Everybody has access to everybody, and they’re holding it in their hands all day long.”

The omnipresence of social media also gave opponents the ability to reach directly into lawmakers’ private lives.

Senator Richard J. Codey, a Democrat and a former New Jersey governor, said his son got calls at home. Francine Weinberg, a daughter of one of the bill’s sponsors who lives in California, said she had to adjust her Facebook page’s privacy settings to end the string of attacks from commenters.

“I call it the politics of harassment,” said Ms. Weinberg, whose mother, Senator Loretta Weinberg, was a primary sponsor of the legislation.

Antivaxxers Win in NJ, Create Doubt in National Public Opinion

In The Politics of Autism, I look at the discredited notion that vaccines cause autism. Twitter, Facebook, and other social media platforms have helped spread this dangerous myth. Measles can kill.

Meg Oliver at CBS:

The vaccination debate rages on in New Jersey, after lawmakers there failed to pass a bill that would have eliminated religious exemptions for public school-required vaccinations. Thousands protested the bill at the state capitol on Monday.

Lisa DeRogatis said she never vaccinated her three children. "I feel like this is a fascist overreach of the government and taking away religious and medical freedoms," she said.

A new Gallup poll shows a 20-year drop in vaccine support among all age groups. The steepest ages are 30-49, at 12%. But 86% of Americans still support vaccines, and say they are not more dangerous than the diseases they prevent.

"We're seeing a decline because of a rise in anti-vaccine misinformation coupled with political activities," said Dr. Peter Hotez, an infectious disease specialist.

Five states have banned non-medical exemptions only, including New York, which eliminated its religious exemption last year after outbreaks that started in 2018. To maintain what's called "herd immunity," public health officials say vaccine rates need to stay above 90% to protect those who can't be vaccinated, including babies and those with compromised immune systems.

R.J. Reinhart at Gallup:

Perhaps the most well-publicized and debunked claim of danger posed by vaccines is that they cause autism. Currently, 10% of U.S. adults believe vaccines cause autism in children, marking a modest increase from 6% in 2015. Nearly half, 45% do not think vaccines cause autism, up modestly from the 41% who said the same almost five years ago. And 46%, down from 52%, say they are unsure.

The more advanced an American's formal education, the more likely they are to say vaccines do not cause autism. The figure is 73% among those with postgraduate education, falling to 61% among those with a college degree only, 42% of those with some college and 28% of those with no college experience. Importantly, lesser-educated Americans are much more likely to have no opinion than to say they believe vaccines do cause autism. The percentage making the causal connection tops out at 12% among Americans with no college education, versus 5% of postgraduates.

There are also substantial partisan differences, with 55% of Democrats saying vaccines do not cause autism, compared with 37% of Republicans.

Origins of Autism Legislation

In The Politics of Autism, I write:

No government agency has exclusive jurisdiction over all of these areas. The federal government takes the lead with some, while states and localities may be the main arenas for others. At each level, different bureaucracies deal with different aspects of autism. Courts and private organizations also play important roles in autism policymaking. Each place on the autism policy map has its own jargon and rules, hence the “alphabet soup” that bedevils parents.

Jerry Carino at The Asbury Park Press:

One day in 1997, two parents from Brick met with Rep. Chris Smith for three hours to discuss a growing but poorly understood health issue.

Bobbie and Billy Gallagher were raising two toddlers with autism, and their concerns prompted Smith to examine how the federal government was addressing the disorder.

“Nothing was being done for autism — $287,000 was being spent,” recalled Smith, whose Congressional district covers part of Monmouth, Ocean and Mercer counties. “That doesn’t even buy a desk with a person behind it.”

..
On Thursday, as Congress sent the Autism CARES Act to Trump, Smith thought of the Gallaghers, whose two toddlers Alana and Austin are now adults in their 20s. The family's push back in 1997 helped lead to the enactment of Smith's first bill on the issue — the Autism Statistics, Surveillance, Research and Epidemiology Act of 2000, which opened the door for comprehensive federal funding.

“There was very little research going on and the Gallaghers were desperate for help,” Smith said. “The CDC didn’t want my first bill. Now they’re more than happy to talk about it.”