Disability and the Kennedys

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

Antivaxxers are sometimes violent, often abusive, and always wrong. A leading anti-vaxxer is presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.

He is now running for president as an independent.

Steve Silberman at Scientific American::

There’s a cautionary tale buried in the Kennedy family legacy that should serve as a stark warning to Shanahan as she amplifies her running mate’s message that people like her daughter are damaged goods. When RFK Jr.’s aunt, Rose Marie Kennedy, was born in 1918, a misguided nurse held her head in the birth canal for two hours while waiting for the obstetrician to arrive. As a result, the little girl, nicknamed Rosemary, struggled with learning disabilities and seizures for the rest of her life. By the time she was in her 20s, her father Joseph, a prominent businessman who was desperate to keep his daughter’s condition secret, arranged for her to have a lobotomy. The brain operation proved devastating to Rosemary, leaving her incontinent and unable to walk or speak coherently.

This tragedy proved to be the impetus for Rosemary's sister, Eunice Kennedy Shriver, to found the Special Olympics in 1968 and become a pioneering advocate for the rights of disabled people. As the 35th president of the United States, Rosemary's older brother John signed the Maternal and Child Health and Mental Retardation Planning Amendment to the Social Security Act, a precursor to the landmark Americans with Disabilities Act. Championed by a bipartisan group of politicians including Senator Bob Dole and Rosemary's brother, Senator Ted Kennedy, the ADA was signed into law in 1990.

Although he owes his electoral prospects entirely to his family name, RFK Jr. seems disinterested in his family’s legacy of fighting for disability rights, dismissing the struggle of autistic people for dignity and respect in his book The Real Anthony Fauci as “a particular brand of autism epidemic denial known as ‘Neurodiversity.’” But if Shanahan’s belief in female empowerment extends to her own daughter, she has much to learn from the other Kennedys, who have publicly disowned her running mate’s spoiler campaign. And hopefully, as Echo comes of age and finds her own people, Shanahan will find she has much to learn from her, too.

Kennedy Family v. RFK Jr.

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

Antivaxxers are sometimes violent, often abusive, and always wrong. A leading anti-vaxxer is presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.

Peter Baker at NYT:

For years, Mr. Kennedy has made himself into a champion of the vaccine resistance movement, promoting spurious assertions about the dangers of inoculations and once calling the Covid-19 vaccine the “deadliest vaccine ever made.” He has said Anne Frank had more freedom during the Holocaust than Americans pressured to take the vaccine, a comparison for which he later apologized, and wrote a book attacking Dr. Anthony S. Fauci.

...

Last month, he declared that the coronavirus was “targeted to attack Caucasians and Black people” and that “the people who are most immune are Ashkenazi Jews and Chinese.” He later said he was misinterpreted, writing on Twitter that the disparate effect of the virus “serves as a kind of proof of concept for ethnically targeted bioweapons” but “I do not believe and never implied that the ethnic effect was deliberately engineered.”

That proved too much for several family members. Kerry Kennedy, his sister and president of Robert F. Kennedy Human Rights, issued a statement calling his remarks “deplorable and untruthful.” Joseph P. Kennedy II, his brother and a former congressman, called them “morally and factually wrong.” Joseph P. Kennedy III, his nephew and another former congressman now serving as Mr. Biden’s special envoy to Northern Ireland, posted his own response on Twitter: “I unequivocally condemn what he said.”

Age of Diagnosis in Girls

A release from the Kennedy Krieger Institute:

Girls are diagnosed with autism spectrum disorder (ASD) later than boys, possibly because females exhibit less severe symptoms, according to a study to be presented Tuesday, April 28 at the Pediatric Academic Societies (PAS) annual meeting in San Diego.

To study gender differences in age at diagnosis and compare symptom severity between boys and girls, researchers at the Kennedy Krieger Institute in Baltimore, Md., analyzed data from the Institute’s Interactive Autism Network. This online registry includes almost 50,000 individuals and family members affected by ASD who work with researchers to better understand the nature of the disorder. In the registry, age of first diagnosis was available for 9,932 children, and 5,103 had completed the Social Responsiveness Scale, which identifies the presence and severity of social impairment.

In the data review, researchers found girls were diagnosed with pervasive developmental disorder, an ASD impacting the development of many basic skills, at a mean age of 4 years compared to 3.8 years for boys. This also was the case with girls diagnosed with Asperger’s syndrome; girls were diagnosed at a mean age of 7.6 years for the condition, which affects language and behavioral development, vs. 7.1 years for boys.

In addition, they found girls struggled more with social cognition — the ability to interpret social cues. Meanwhile, boys had more severe mannerisms such as repetitive behaviors like hand flapping, as well as highly restricted interests. Older boys, ages 10-15, also had more difficulties with the ability to recognize social cues and use language in social situations.

“This and other studies suggest that girls with ASD, as well as perhaps older women with this disorder, differ from males in key symptoms and behaviors, particularly around social interactions,” said Paul Lipkin, MD, FAAP, study author and director of the Interactive Autism Network at Kennedy Krieger. “We must determine if the less recognizable symptoms in girls are leading not only to delayed diagnosis, but also under-identification of the condition.”

Researchers also saw an increase in the proportion of girls who were diagnosed with ASD in 2010-2013 when compared to 2006-2009. Dr. Lipkin, a neurodevelopmental pediatrician who also serves as director of medical informatics at Kennedy Krieger, believes this increase may be due to growing public awareness and that screening methods and treatment strategies may need to be modified to meet the needs of each gender.

Dr. Lipkin will present “Gender Differences in Diagnosis and Social Characteristics of Children with Autism (ASD) from a U.S. Registry” from 10-10:15 a.m. PT on Tuesday, April 28. To view the study abstract, go to http://www.abstracts2view.com/pas/view.php?nu=PAS15L1_4545.2

More on the CDC Report

CDC's new estimate of autism prevalence is generating a good deal of commentary.

From CNN:

The earlier a child is diagnosed with autism, the better their chances of overcoming the difficulties that come with the disorder.

"It's not a cure, but it changes the trajectory," says Dr. Gary Goldstein, president and CEO of the Kennedy Krieger Institute and professor of neurology at Johns Hopkins University.

"We need to continue our efforts to educate the health care community and general public to recognize the developmental problems associated with ASD and other developmental disorders at earliest age possible, so that intervention can be initiated, bad habits can be avoided and families will know what's wrong with their child," says Dr. Max Wiznitzer, a pediatric neurologist at Rainbow Babies and Children's Hospital in Cleveland who diagnoses and treats children with autism.

...[E]xperts such as Wiznitzer and Goldstein are concerned that the new CDC report is not describing the same autism that was present and diagnosed 20 years ago, when the numbers first shot up.

"Twenty years ago we thought of autism with intellectual disability. We never looked at children who had normal intelligence" -- doctors never considered that high-functioning children had autism too, says Goldstein.

Wiznitzer believes written reports can't definitively determine whether a child has autism. You need to see the child to complete a diagnosis, which the CDC experts did not have the opportunity to do.

"This report tells us that there's a significant number of children in the states where they were assessed that have social differences and a pattern of behaviors that can be represented by ASD, but may also be due to other conditions that superficially can have similar features, such as social anxiety, ADHD with social immaturity and intelligence problems," he says.

The Philadelphia Inquirer reports:

A new federal report shows yet another increase in the percentage of children with autism, with New Jersey having the highest rate of 11 states studied.

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Walter Zahorodny, an epidemiologist and psychologist at Rutgers New Jersey Medical School who directed data collection in New Jersey, said the new report should put to rest the argument over whether the increase in autism diagnoses stems from growing awareness or reflects growing numbers of children with the disabling condition.

"It's a true increase," he said. "It's a change of great magnitude. It's silly to go on debating that." He expects the numbers to climb higher before they plateau.

Jennifer Pinto-Martin, an epidemiologist in the University of Pennsylvania School of Nursing who worked on previous versions of the report, is not so sure. While the CDC has been using the same definition for many years, she said, changing attitudes have made it easier to get the diagnosis.

Both agreed that one reason New Jersey's numbers are high is that the state has particularly good record-keeping and services.

Autism Speaks reports:

During a press conference hosted by Autism Speaks following the CDC announcement, Senate and House leaders called for the reauthorization of the Combating Autism Act (CAA) and enactment of the ABLE Act to help address the "aging-out" issue as an estimated 500,000 children mature into adulthood over the next 10 years.

Enacted in 2006 and reauthorized in 2011, the CAA has dedicated $1.7 billion in federal funding for research through the National Institutes of Health, the prevalence monitoring conducted by the CDC, and detection training through the US Department of Health and Human Services. The law will expire September 30 unless Congress acts.

The ABLE Act, (Achieving a Better Life Experience Act), would allow the creation of tax-free savings accounts for individuals with disabilities to provide for their housing, transportation, job support, education and other needs. The legislation has extraordinary support with 70 cosponsors in the Senate and 350 of the 435 House members.

"To my mind, it’s a clarion call to continue -- in fact increase -- our efforts on the federal level into research and services and support for individuals with autism and their families," said Sen. Robert Menendez (D-NJ), the Senate sponsor of the 2011 CAA reauthorization, during the Autism Speaks press conference.

"I hope we can think about at least creating some new opportunities" in the new CAA reauthorization legislation, Menendez said. "This aging out question is a critical question for families across (New Jersey) and across the country. The challenge on the autism disorder spectrum doesn’t stop at age 18 or 21. It continues."

The House sponsor of the 2011 reauthorization bill, Rep. Chris Smith (R-NJ), also demanded action

"The information is not just disturbing, it is numbing," Smith said. "Statistics are sometimes bandied around Washington and people pay scant notice to it. But this ought to mobilize not just the federal government, but state governments and local governments to work in partnership."

Study of Bullying

Previous posts have discussed the impact of bullying on ASD children.A release from the Kennedy Krieger Institute:

Nearly 70 percent of children with autism spectrum disorders (ASD) experience emotional trauma as a result of being bullied, according to findings published today in the Journal of Developmental & Behavioral Pediatrics, while a significant portion were concerned for their own safety at school. The study also found that children with ASD who presented with pre-existing psychiatric diagnoses were at increased risk for involvement in bullying, with children diagnosed with ASD and attention deficit hyperactivity disorder (ADHD) or depression at highest risk of being victimized over a one month period. This study was led by researchers from the Interactive Autism Network, a project of the Kennedy Krieger Institute that is the nation’s first online autism registry with participants from 47 states, making it the largest collection of autism data in the world.

“Recent research indicates that children receiving special education services are at risk of being victimized at higher rates than regular education students,” says Dr. Paul Law, senior study author and director of the Interactive Autism Network at Kennedy Krieger. “Our findings show that not only are these children being bullied more, but they are also experiencing significant short-term, and likely long-term, effects of being bullied.”

Participants in the study included parents of 1,221 children with ASD recruited through an online questionnaire. Researchers utilized the Bullying and School Experiences of Children with ASD Survey, a 63-item questionnaire, to collect key data from parents regarding their child’s school environment, involvement in bullying, and the child’s educational and psychological functioning. Additionally, researchers used the Parent Observation of Child Adaptation (POCA) to reflect parents’ ratings of their child’s behaviors and level of psychological distress after a bullying incident. The study’s findings on the characteristics and psychiatric comorbidities most associated with bullying are below.

Study of Wandering

Connie Anderson and colleagues have a study of wandering in Pediatrics.  The abstract:

OBJECTIVES: Anecdotal reports suggest that elopement behavior in children with autism spectrum disorders (ASDs) increases risk of injury or death and places a major burden on families. This study assessed parent-reported elopement occurrence and associated factors among children with ASDs.

METHODS: Information on elopement frequency, associated characteristics, and consequences was collected via an online questionnaire. The study sample included 1218 children with ASD and 1076 of their siblings without ASD. The association among family sociodemographic and child clinical characteristics and time to first elopement was estimated by using a Cox proportional hazards model.

RESULTS: Forty-nine percent (n = 598) of survey respondents reported their child with an ASD had attempted to elope at least once after age 4 years; 26% (n = 316) were missing long enough to cause concern. Of those who went missing, 24% were in danger of drowning and 65% were in danger of traffic injury. Elopement risk was associated with autism severity, increasing, on average, 9% for every 10-point increase in Social Responsiveness Scale T score (relative risk 1.09, 95% confidence interval: 1.02, 1.16). Unaffected siblings had significantly lower rates of elopement across all ages compared with children with ASD.

CONCLUSIONS: Nearly half of children with ASD were reported to engage in elopement behavior, with a substantial number at risk for bodily harm. These results highlight the urgent need to develop interventions to reduce the risk of elopement, to support families coping with this issue, and to train child care professionals, educators, and first responders who are often involved when elopements occur.

The New York Times reports on the study:

“I knew this was a problem, but I didn’t know just how significant a problem it was until I really began to look into it,” said Dr. Paul A. Law, senior author of the study and director of the Interactive Autism Network, a registry that is a project of the Kennedy Krieger Institute in Baltimore. “This is probably one of the leading causes of death and morbidity for kids with autism.”

Advocates for families affected by autism say the findings underscore the need to raise public awareness and alter policy. While Amber alerts are used to mobilize the public when a child is believed to have been abducted, for instance, generally they are not used when a disabled child goes missing, said Alison Singer, president and a founder of the Autism Science Foundation, one of the organizations that supported the study.

Emergency responders should receive special training on how to search for autistic children who are nonverbal and often scared by lights and sirens, she said. Emergency personnel also need to know to check streams or ponds, since many children with autism are drawn to bodies of water, as well as highways.
...
The idea for the new study came from a family coping with autism, and it was financed by several advocacy organizations. Researchers surveyed families who had a child with autism or a related disorder between the ages of 4 and 17.

Most of the respondents came from 1,098 of Interactive Autism Network’s most active participants, 60 percent of whom completed the survey. Families who chose to participate knew the survey was about wandering, and those coping with wandering children may have been more likely to respond, skewing the results, Dr. Law acknowledged.

Restraint and Seclusion: Updates

The Baltimore Sun reports:

Howard County school officials are investigating an incident involving an 11-year-old autistic boy who was handcuffed by police officers on a school bus after he allegedly bit several adults and students.

The child, who does not speak and has limited social skills, according to his mother, was being transported from the Kennedy Krieger Institute in Baltimore, which accepts students whose severe learning disabilities require specialized education not provided by public school systems.

Perhaps the most notorious recent incident is the "therapy bag" case in Kentucky. AP reports:

Some Kentucky school superintendents are expressing concerns about a proposed state regulation on the use of student restraint.

Pendleton County Schools Superintendent Anthony Strong told The Kentucky Enquirer (http://bit.ly/RIsuqJ) that the proposal is too vague. He says employee expectations need to be defined better.

"There appears to be subjectivity as to when the staff member should intervene," said Strong. "There is a huge question as to where the line is."

Kentucky Department of Education spokeswoman Lisa Gross says the proposal is still in draft form and wording could be changed. A public hearing on the issue will be held Tuesday in Frankfort.

The issue came to the forefront late last year after state officials received three complaints about students being restrained or confined alone in small rooms. The department cited two schools for violating the rights of disabled students who were subjected to such treatment.

Read more here: http://www.kentucky.com/2012/09/21/2345175/superintendents-concerned-about.html#storylink=cpy

Read more here: http://www.kentucky.com/2012/09/21/2345175/superintendents-concerned-about.html#storylink=cpy

Read more here: http://www.kentucky.com/2012/09/21/2345175/superintendents-concerned-about.html#storylink=cpy

In Massachusetts, the Lexington Patch reports on Robert Ernst, a 17-year-old student with ASD:

According to him and his mother, Wendy Ernst, Robert was put on an individualized education program (IEP) since pre-school, but wasn’t diagnosed with Asperger’s until fifth grade. During the intervening years is when, according to the family, Robert was shut in a seclusion room and physically restrained on several occasions by teachers and aids at the Fiske and Estabrook elementary schools.

The Ernst family decided to share Robert’s story last week, after allegations of the mistreatment of special needs students and use of seclusion rooms in the Lexington Public Schools were thrust into the spotlight by a former Lexington resident’s op-ed in the New York Times. Going public is something family members said they wouldn’t have done otherwise, but which they hope will bring awareness to the community and closure to the family.

“I hope this starts with people becoming aware that these things can happen, and stop wearing those rose-colored glasses,” said Robert, “Because these things have happened in our town.”
Allegations of abuse within the special education system in the Lexington Public Schools came to the fore last week when former resident Bill Lichtenstein shared the story of his daughter’s “seclusion room” experiences while a kindergartner at Fiske during the 2005-2006 school year.

A second story emerged during a School Committee meeting last Tuesday, and the following daydistrict administrators asked the state Department of Children and Families to conduct an investigation into those cases. The Ernst family has asked for Robert’s case to be included, but as of Wednesday evening had not definitively heard back about its inclusion.

In Wilmington, NC, the StarNews reports:

New Hanover County Schools' use of seclusion rooms to deal with students' aggressive behavior does not violate North Carolina law, according to Rick Holliday, assistant superintendent for support services.

On Aug. 27, the U.S. Department of Education Office for Civil Rights (OCR) completed an investigation into the district's seclusion rooms that was opened in February. The inquiry found that the district had no compliance issues with N.C.'s Greenblatt Act, which gives schools strategies, such as seclusion rooms, to deal with students' aggressive behavior.

The paper then followed up:

Sara Reider, mother of two special-needs students in New Hanover County, spoke to the board during the public comment section at Tuesday's meeting. She said that while OCR found no violations against one student, it did find larger violations during the course of its investigation.

On Aug. 27, OCR completed an investigation into the district's seclusion rooms that was opened in February. The inquiry found that the district had no compliance issues with N.C.'s Greenblatt Act, which gives schools strategies, such as seclusion rooms, to deal with students' aggressive behavior.

The investigation stemmed from a two-fold complaint filed in January by parents of a 5-year-old special education student. The complaint alleged that the student was being placed in a seclusion room and forced to stay inside and that the district was only using its seclusion rooms for students with disabilities.

Reider cited what she said was OCR's report on the investigation during her comments to the board. A StarNews request for the official report through the Office for Civil Rights is pending.

Multiple Problems Facing ASD People

Previous posts have examined bullying of ASD kids. The Kennedy Krieger Institute reports:

Today, the Interactive Autism Network (IAN), www.ianproject.org, the nation's largest online autism research initiative and a project of the Kennedy Krieger Institute, reports preliminary results of the first national survey to examine the impact of bullying on children with autism spectrum disorders (ASD). The results show that 63 percent of children with ASD have been bullied at some point in their lives. These children, who are sometimes intentionally "triggered" into meltdowns or aggressive outbursts by peers, are bullied three times more frequently than their siblings who do not have ASD.

"These survey results show the urgent need to increase awareness, influence school policies and provide families and children with effective strategies for dealing with bullying," said Dr. Paul Law, director of the IAN Project at the Kennedy Krieger Institute. "We hope that this research will aid efforts to combat bullying by helping parents, policymakers and educators understand the extent of this problem in the autism community and be prepared to intervene." (For more insights on the survey results, visit this online discussion with Dr. Connie Anderson, IAN's community scientific liaison.)

Nearly 1,200 parents of children with ASD completed the survey. Findings show that these children (ages 6 to 15 years) are especially vulnerable to bullying, and point to a number of risk factors.

The mortality rate among ASD people may be higher than in the general population. Karen Weintraub writes at The Boston Globe:

But science and medicine are catching up with parents’ understanding of the condition, and a more nuanced view is slowly emerging: Autism is not just a brain problem. Many people with autism, which affects 1 in 110 American children, are profoundly unwell, with physical symptoms ranging from sleep disorders to seizures, energy and immune issues to digestive troubles such as those that still occasionally plague Walt. And treating those symptoms can markedly improve the lives of autistic children, even if doesn’t cure them.

“There’s a whole slew of other symptoms,’’ besides the communication challenges, social impairments, and repetitive behaviors that are the core, defining traits of autism, said Dr. Gary W. Goldstein, president and chief executive officer of the Kennedy Krieger Institute, a Baltimore research institute that focuses on disorders of the brain, spinal cord, and musculoskeletal system. “A fair percentage have gastrointestinal problems, at least when they’re young, that may even outweigh the autism.’’
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People with autism were once thought to be intellectually disabled as well. Goldstein said he used to think that 70-80 percent of people on the spectrum had intellectual deficits; now he believes that number is closer to 5-10 percent, or even lower. Walt, who was recently able to sit through his first IQ test, has normal intelligence, even though he struggles to communicate all he know