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Sunday, March 31, 2024

Yet Another Possible Risk Factor: Household Chemicals

 In The Politics of Autism, I discuss various ideas about what causes the condition

A release from Case Western Reserve:

A team of researchers from Case Western Reserve University School of Medicine has provided fresh insight into the dangers some common household chemicals pose to brain health. They suggest that chemicals found in a wide range of items, from furniture to hair products, may be linked to neurological diseases like multiple sclerosis and autism spectrum disorders.

Neurological problems impact millions of people, but only a fraction of cases can be attributed to genetics alone, indicating that unknown environmental factors are important contributors to neurological disease.

The new study, published yesterday in the journal Nature Neuroscience, discovered that some common home chemicals specifically affect the brain’s oligodendrocytes, a specialized cell type that generates the protective insulation around nerve cells.

Studies have ruled out vaccines as a cause of autism, but there is a very long and growing list of other correlatesrisk factors, and possible causes that have been the subject of serious studies: 

  1. Inflammatory bowel disease;
  2. Pesticides;
  3. Air pollution and proximity to freeways;
  4. Maternal thyroid issues;
  5. Autoimmune disorders;
  6. Induced labor;
  7. Preterm birth;
  8. Fever;  
  9. Birth by cesarean section;
  10. Anesthesia during cesarean sections;
  11. Maternal and paternal obesity;
  12. Maternal diabetes;
  13. Maternal and paternal age;
  14. Grandparental age;
  15. Maternal post-traumatic stress disorder;
  16. Maternal anorexia;
  17. Smoking during pregnancy;
  18. Cannabis use during pregnancy;
  19. Antidepressant use during pregnancy;
  20. Polycystic ovary syndrome;
  21. Infant opioid withdrawal;
  22. Zinc deficiency;
  23. Sulfate deficiency;
  24. Processed foods;
  25. Maternal occupational exposure to solvents;
  26. Congenital heart disease;
  27. Insufficient placental allopregnanolone.
  28. Estrogen in the womb;
  29. Morning sickness;
  30. Paternal family history;
  31. Parental preterm birth;
  32. Antiseizure meds
  33. Location of forebears
  34. Lithium
  35. Aspartame
  36. BPA
  37. Brain inflammation
  38. Maternal asthma
  39. Infertility
  40. Ultraprocessed foods

 

Saturday, March 30, 2024

Autism CARES Reauthorizstion

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

Anne Roux at the Policy Impact Project of the AJ Drexel Autism Institute:
The federal Autism CARES Act, which has existed for the past 17 years, is due for renewal by September 30, 2024. This law authorizes funding and guidance for autism surveillance, training, and research programs. Before these programs began in the early 2000s, there was little to no policy that directly addressed autistic people’s needs. Thanks to the establishment of the CDC’s Autism Developmental Disabilities Monitoring (ADDM) program, research and policy activities have grown exponentially, as ADDM quantified the dramatic increase in autism prevalence – now 1 in 36 children.

Findings from scholarly activity, and the aging of the earlier cohorts of autistic youth, have generated new thoughts regarding the focus of Autism CARES Act investments. In recent months, leading autism advocacy organizations have issued statements and provided testimony with recommendations for updates to the Autism CARES Act.*
...

Some proposals also call for restructuring how recommendations for autism research funding are made and how autism policy is coordinated.

Our own services research at the Policy and Analytics Center receives funding through the Autism CARES Act. This funding is critical because services research, which focuses on services that are needed and used by autistic people, has always been allocated less than 10% of autism research funding. This means there is limited research funding focused on improving people’s functioning and quality of life. We have used this funding to advance understanding of the needs of autistic transition-age youth, the needs of autistic individuals who have been historically under-represented in research, and physical health issues common among autistic people. This funding also partly supports publication of the National Autism Indicators Reports which advise decisionmakers and advocates on how autistic individuals and their families are faring. As such, we are uniquely positioned to speak to how the Autism CARES Act could better address the needs of autistic transition-age youth and adults.

Our recommendations:
We concur with the need for increased services research and policy initiatives focusing on:
  • autism care, particularly in the areas of adult diagnosis, which is often prohibitively expensive yet required for program eligibility; mental health; and delivery of physical health services in ways that are appropriate for the sensory and cognitive needs of autistic individuals
  • the communication needs of non-speaking individuals
  • daily life challenges of autistic adults, including accommodations for sensory needs
  • an emerging crisis stemming from limited systems-level capacity to support autistic individuals as they age, particularly those who have aging care partners
We concur with the need for research to improve the system of care for autistic individuals who require round-the-clock support (both long-term and intermittent, depending on people’s needs); and we add the need for research to also improve the system of care for autistic individuals who do not meet eligibility requirement for care given absence of a discrete intellectual disability (but who often have severe and persistent mental illness that interferes with functioning).
We further recommend research and policy focusing on:
  • Effective supports (e.g., financial, respite, training, emotional) for families who are the primary providers of care for autistic people who cannot live on their own, or who cannot find or fund accessible and safe living arrangements in a place of their own. These needs are exacerbated by long wait lists for Medicaid home- and community-based services, a significant shortage of direct support workers, and difficulty finding affordable housing and funding for rental assistance.
  • Understanding of capacity and efficacy of public health insurance mechanisms which are the primary funding source for care of autistic individuals, including investigation of the large numbers of young autistic persons receiving dual Medicaid-Medicare benefits.
  • Cross-system capacity to deliver services and supports in the areas of employment, housing, and planning for the transition into adulthood.
*We reviewed recommendations from the Autism Society of America, the Association of University Centers on Disability, Autism Speaks, and the Autism Science Foundation

.

Friday, March 29, 2024

SBF


Eric M. Garcia at MSNBC:
The 25-year sentence Sam Bankman-Fried got Thursday for defrauding users of the collapsed cryptocurrency exchange FTX is evidence that the defendant’s past attempts to have his autism considered a mitigating factor during the judge’s sentencing decisions didn’t work. Multiple people had argued on Bankman-Fried’s behalf that his autism made him less culpable for his crimes or less deserving of a lengthy stay in prison.

...

Reading these statements as an autistic person evoked in me conflicting thoughts: The plea for leniency because of Bankman-Fried’s neurotype follows a tired trope. We’ve seen such appeals before. An attorney for Jacob Chansley, the so-called QAnon Shaman, said of him and other January 6 defendants, “These are people with brain damage, they’re f------ retarded, they’re on the g--d---n spectrum.” Those narratives equate bad behavior with autistic traits and imply that autism makes people commit crimes.

...

Yes, prison conditions are especially hard on autistic people. Those advocating on behalf of Bankman-Fried aren’t wrong to think so. All the same,  Bankman-Fried’s attempt to use his neurodivergence as a means to escape the consequences of his actions are wrong.The criminal justice system consistently fails neurodivergent people, but Bankman-Fried is not in that number.

Abuse in California

 In The Politics of Autism, I discuss services for people with disabilities.

Regional centers are private nonprofits that contract with California's Department of Developmental Services to coordinate or provide services for people with developmental disabilities. The 21 regional centers help disabled people and their families find and access a variety of services.

At LAT, Rebecca Ellis reports on abuse at Elwyn-Mayall, a home in Northridge for developmentally-disabled adults.

In California, an alphabet soup of bureaucracies is tasked with making sure people with developmental disabilities are not abused — and if they are, making sure those responsible are held accountable.
But advocates say the oversight system has broken down in California, allowing problem homes to stay in business and abusers to circulate through them.

The California Department of Social Services, which licenses group homes, often takes the lead on big investigations and can permanently bar employees from all homes if it finds enough evidence that abuse occurred. But advocates say complaints of abuse are rarely proved, making it easy for problematic staff, like Fabunmi, to drift from one home to another.

“The state doesn’t have enough investigators to do the sort of due diligence that’s required to understand what really happened,” said Jody Moore, a lawyer who represented Carter and specializes in cases of abuse in nursing and group homes.

...

In the last five years, the state has investigated 25 complaints alleging adults in Elwyn homes were injured or physically mishandled, according to publicly available investigation reports from the state’s licensing division. All but three were not substantiated.

The regional centers, meanwhile, have the power to impose sanctions on problem homes, including pulling their contract. But advocates say they rarely do, instead encouraging families to move their loved one out of the home — a “sanction” that families say is useless when there’s nowhere to go. On Nov. 2, the north county regional center sent Elwyn-Mayall a letter that cited state regulations, saying they would recommend relocation and “discuss the consequences of refusing to relocate” with families immediately. Nobody 
moved.

Former and current staff at regional centers say there’s little appetite for cracking down hard on providers when there’s a shortage of beds, particularly for those who need the most intensive support. It leaves staff with an essential question: How bad does the care have to be before it is worse than nothing?

“I’ve heard of vendor programs where the [inspectors] went in and the place is infested with bedbugs, the sheets haven’t clearly been changed in months, and they really are faced with a tough choice,” said a former longtime regional center staffer who spoke on the condition of anonymity to discuss her past employer. “They know there’s no open beds. So what do they do?”

 


Thursday, March 28, 2024

More on Shanahan's Falsehoods

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 wrongA 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.



One of those issues also happens to be a passion of mine and a focus of my philanthropic work, chronic disease. I got into it through my own journey of reproductive health, followed by a steep learning curve for caring for my daughter who has an autism diagnosis. In that journey, I discovered that women's fertility is in precipitous decline around the world. We are facing a crisis in reproductive health that is embedded in the larger epidemic of chronic disease. Because it has been so personal for me and my daughter, I got deep into the research and consulted some of the best scientists and doctors. Let me tell you what I found. There are three main causes. One, is the toxic substances in our environment, like endocrine disrupting chemicals in our food, water, and soil, like the pesticide residues, the industrial pollutants, the microplastics, the PFAs, the food additives, and the forever chemicals that have contaminated nearly every human cell. Yes, and it makes you angry to hear this. It makes me angry to say it because we shouldn't be here right now.

Second is electromagnetic pollution. You don't hear politicians talking much about that either, but it is something we need to look at. As Bobby says, we need to investigate every possible cause of the chronic disease epidemic that is devouring our nation from the inside.

Third, I'm sorry to say, is our own medications. Pharmaceutical medicine has its place, but no single safety study can assess the cumulative impact of one prescription on top of another prescription, and one shot on top of another shot on top of another shot, throughout the course of childhood. We just don't do that study right now and we ought to. We can and we will. Conditions like autism used to be one in 10,000. Now here in the state of California it is one in 22. One in 22 children affected. Allergies. Obesity. Anxiety. Depression. Our children are not well. Our people are not well. And our country will not be well for very much longer if we don't heed this desperate call for attention.

 D'Angelo Gore, Eugene Kiely and Lori Robertson at FactCheck.org
Her remarks ignored the main reasons for the rise in autism prevalence, and they left the impression that childhood vaccines are a cause — a debunked idea that Kennedy has repeatedly pushed for years.

The prevalence of children identified as having autism has increased significantly over the past several decades. But, while there may be some true increase in autism, the major reasons for the rise are increased awareness of the disorder and changes in how it is defined and diagnosed, as we’ve explained in previous articles.
...

As we’ve also explained before, in a story debunking Kennedy’s false and misleading assertions about autism, there are some known factors that have likely led to a slight true increase in autism, including a rise in births to older parents and in infants with birth complications who survive.

And an increased risk of autism also has been associated with genetics, prenatal exposure to air pollution or pesticides, as well as certain maternal health conditions.

However, there’s no evidence childhood vaccines are linked to the neurodevelopmental disorder, and scientists have studied the issue extensively, looking into multiple suggested components and vaccine types.

David Mandell, a psychiatric epidemiologist, health services researcher and director of the Center for Mental Health at the University of Pennsylvania, told us for our prior story, “Every single rigorous study we have” shows “no association” between autism and vaccination.

Wednesday, March 27, 2024

Kennedy-Shanahan: Two Antivaxxers

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 wrongA 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.

RFK Jr. picked wealthy Nicole Shanahan as his running mate.  They are both antivaxxers.  Paul Bond at Newsweek:

Shanahan is critical of the way the press has framed Kennedy "as an anti-vaxxer whose own family doesn't support him," recalling that she initially bought into the description, dismissing his candidacy until a friend she described as "a Silicon Valley mom" urged her to do her own research.

"She told me to listen to one interview of Bobby. Any interview would suffice. After I did, I discovered there was definitely a misalignment between what I thought and who he really is," she said. "I didn't even know he was an environmental lawyer. And he's not an anti-vaxxer; he's just someone who takes vaccine injuries seriously."

Shanahan told Newsweek that her daughter with Brin, born in 2018, has autism and other special needs and that she "wholeheartedly attributes that to environmental toxins," a topic near and dear to her heart and a cornerstone of Kennedy's campaign.


 CNN's Kasie Hunt caught Kennedy lying about his blanket opposition to vaccines. 



Tuesday, March 26, 2024

Banning Shock

In The Politics of Autism, I write:

For those who remain at larger residential institutions, the horrors of yesteryear have generally ended. In 2012, however, a ten-year-old video surfaced, showing disturbing image of an electric shock device at the Judge Rotenberg Center in Canton Massachusetts. Staffers tied one student to a restraint board and shocked him 31 times over seven hours, ignoring his screamed pleas to stop. The Rotenberg Center is the only one in the nation that admits to using electric shocks on people with developmental disabilities, including autism. Center officials said that they had stopped using restraint boards but insisted that shocks were necessary in extreme cases to prevent officials insist the shock program is a last resort that prevents people with severe disorders from hurting themselves or others.
Today, the U.S. Food and Drug Administration (FDA) is proposing a ban of electrical stimulation devices (ESDs) intended to reduce or stop self-injurious or aggressive behavior, a step rarely taken by the agency. The agency has determined that these devices present an unreasonable and substantial risk of illness or injury. This is the second time the FDA has proposed a ban of these particular devices.

ESDs deliver electrical shocks through electrodes attached to an individual’s skin to attempt to reduce or stop harmful behaviors. This proposed rule proposes to ban ESDs intended for self-injurious and aggressive behaviors. Notably, some people who exhibit self-injurious or aggressive behavior have intellectual or developmental disabilities that make it difficult for them to communicate or make their own treatment decisions. These devices present a number of psychological risks including depression, anxiety, worsening of underlying symptoms, development of post-traumatic stress disorder, and physical risks such as pain, burns, and tissue damage.

The proposed rule, if finalized, will remove ESDs from the market, and the devices will no longer be considered legally marketed. The FDA has information to indicate that only one facility is currently using these devices in the United States, which is the Judge Rotenberg Education Center in Canton, Massachusetts. We estimate around 50 individuals currently have a treatment plan that includes the use, or potential use, of an ESD. Those exposed to these devices may need time to gradually transition away from this device and adjust treatment plans. The FDA intends to consider the needs of these patients should we finalize the proposed ban.

The FDA’s first ban of these devices in 2020 was challenged in court and, in effect, annulled (vacated) based on the court’s interpretation of the FDA’s authorities under the Federal Food, Drug, and Cosmetic Act (FD&C Act). Since that decision, changes to the FD&C Act make clear that the FDA has authority to issue a ban such as the previous ban on ESDs for self-injurious or aggressive behavior, which applies to specific intended uses.

This proposed rule analyzes the new information, available since the FDA engaged in the prior rulemaking, relating to the risks and effects of ESDs and treatment of self-injurious and aggressive behavior. Evidence considered by the agency included clinical and scientific data, input from experts in the field and state agencies, comments received from the previous proposed rule to ban ESDs, input from patients and parents of individuals who have been treated with ESDs, and disability rights groups, as well as insights from FDA advisory panels. Importantly, the new information supported and did not alter the FDA’s previous determinations regarding the risks and benefits associated with these devices when used for self-injurious or aggressive behavior, or the agency’s conclusion that these devices present unreasonable and substantial risk of illness or injury to the public.

This proposed rule applies only to ESDs intended to be used for self-injurious or aggressive behavior and does not apply to aversive conditioning devices intended to be used for other purposes, such as those used for smoking cessation, which are outside the scope of this rule, or other FDA-cleared or approved devices or technologies.

The Proposal to Ban Electrical Stimulation Devices for Self-Injurious or Aggressive Behavior will be open for comment until May 28, 2024. The FDA will then review and consider comments before determining whether to issue a final rule.

Monday, March 25, 2024

Measles and Trump

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   Examples include measlesCOVID, flu, and polio.

In Iowa, Nevada, Virginia, and Georgia, Trump has said:  "I will not give one penny to any school that has a vaccine mandate or a mask mandate."

Linda Searing at WP:

An outbreak of measles — a highly contagious disease thought to have been eliminated from the United States by the year 2000 — had resulted in at least 64 recorded cases nationwide by late last week, more than the total (58) reported for all of last year, according to the Centers for Disease Control and Prevention.

Last week, Jesse Ehrenfeld, the president of the American Medical Association, said in a statement that “the rate of vaccinations against measles in the U.S. has declined since 2019 — putting more people at risk of illness, disability and death.”

Alexander Tin at CBS:

Measles cases that turned up in at least three states this year were linked to visits to Florida, federal and state investigators said, according to a report by CBS News.

Health department officials in Florida believe that cases from earlier in the year from Indiana and Louisiana may have originated in the Sunshine State, according to messages sent between local investigators and the Centers for Disease Control and Prevention.Louisiana previously said its first two measles cases in 2024 in the New Orleans were linked to travel to another state, but didn’t say which one.

A patient in Ohio also was also treated for measles after visiting Florida, officials said.


 

Sunday, March 24, 2024

Political Experiences of Autistic Adults

 In The Politics of Autism, I write:  "Support from the general public will be an important political asset for autistic people. Another will be their sheer numbers, since a larger population of identified autistic adults will mean more autistic voters and activists."

Alison U. Tassone, Kaitlyn E. Breitenfeldt, Elizabeth A. DeLucia, Jordan Albright, and Christina G. McDonnell.A Pilot Study of Political Experiences and Barriers to Voting Among Autistic Adults Participating in Online Survey Research in the United States.Autism in Adulthood.ahead of print

Abstract:
Background: Political participation is an important and meaningful aspect of civic engagement for adults. Existing research suggests that disabled people face barriers to political engagement. However, very little is known regarding how Autistic adults engage in politics in the United States.

Methods: Participants included 276 self-consenting Autistic adults (including those with a diagnosis and self-identified) and 361 non-autistic adults. Participants completed an online survey regarding political attitudes, barriers to voting, engagement methods, and affective experiences between December 2020 and January 2021.

Results: The majority of self-consenting Autistic adults in this online sample were registered to vote and identified themselves as part of the Democratic party and as very liberal. On average, Autistic adults most strongly supported policies surrounding disability rights and education. Overall, Autistic adults experienced greater barriers to voting than non-autistic adults. When adjusting for demographic differences across groups, the strongest group differences were that Autistic adults reported greater barriers to voting due to mental health difficulties, fear of crowds, and fear of leaving the house. Autistic adults engaged in politics more through social media outlets and through signing petitions relative to non-autistic adults, but reported engaging less through watching political debates, watching the news, and reading about politics in print newspapers, although effects were not maintained after adjusting for demographic differences. When asked about the current political climate, Autistic adults reported higher negative emotions (feeling upset, nervous, and afraid) than non-autistic adults. Demographic factors (age, gender, and income) related to political experiences.

Conclusion: Results of this study suggest self-consenting Autistic adults face significant barriers to voting and have unique experiences related to political participation. Future research to improve and support political participation among Autistic adults is a critical research priority.

Saturday, March 23, 2024

IDEA Reauthorization is Overdue

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

Mitchell L. Yell & M. Renee Bradley (2024) Why We Have Special Education Law: Legal Challenges to the IDEA, Exceptionality, DOI: 10.1080/09362835.2024.2301820

Abstract
In 1974, the Education for all Handicapped Protection Act was signed into law by President Gerald Ford. This law which was renamed the Individuals with Disabilities Education Act (IDEA) in 1990, established a federal entitlement to special education for eligible students with disabilities. In 1982 and again in 2017, the U.S. Supreme Court clarified the primary purpose of the law, that is the obligation of public schools to provide eligible students with a free appropriate public education. In this article we (a) examine the legal underpinnings of special education in the IDEA, (b) analyze legal challenges to IDEA, focusing on the U.S. Supreme Court’s efforts to define the IDEA-mandated free appropriate public education (c) focus on the limits of the law to require scientific solutions for improving special education and (d) offer potential solutions to these challenges in the law and in the federal government’s efforts to improve special education.

From the article:

 Reauthorization of the IDEA is overdue and although it is unclear when this may occur, it will present advocates, researchers, and practitioners with an opportunity to support positive changes in the law. For example, the IDEA (20 U.S.C. § 1415[k][1][D][ii]) and its implementing regulations (34 C.F.R § 300.530[d][ii] and [f][1][i]) currently only require that school districts conduct functional behavioral assessments and develop or revise behavior intervention services and modifications ‘as appropriate’ if there is a disciplinary change of placement. Adding this language to the evaluation requirements of the IDEA could make a difference in due process hearing rulings and in court cases. 

Another example of a positive change that could be made in the IDEA is in the definition of FAPE. The definition has not changed since 1975 and courts have noticed this. In fact, in the 10th Circuit court opinion in Endrew F. it was noted that ‘Congress has maintained the same statutory definition of FAPE from its initial inception in the EHA and in each subsequent amendment to the Act’ (Endrew F., 2015, p. 1339). The 10th circuit court used this as one of its justification for maintaining the lower ‘some’ educational benefit standard rather than adopting the higher ‘meaningful’ educational benefit standard used in a few circuits. Admittedly, this is only dicta10 but it, nonetheless, gives insight into the court’s rationale. What if, in the next reauthorization, the definition of was changed to reflect the Supreme’ Court’s ruling in Endrew F. and even strengthen it? Could this make a differences in hearings and court cases? Perhaps. 

Third, researchers, and practitioners should not dismiss the historic and important role of the Part D programs in enhancing state and local implementation efforts. Historically, Part D investments have provided important evidence and information that has served as the foundation for improvements to the IDEA. As an example, the National Center on Education Outcomes, was instrumental in 2004 reauthorization discussions resulting in the inclusion of students with disabilities in state accountability efforts. The Part D investments provide support to ensure special education training programs can support preservice training for desperately needed special education personnel. Examples of some of the investments that have, and will continue to have, a profound influence on special education are the national centers such as the CEEDAR Center (ceedr.education.ufl.edu), Center of Positive Behavioral Interventions and Supports (pbis.org), Iris Center (iris.org), National Center on Intensive Intervention (intensiveintervention.org), National Center for Pyramid Model Innovations (challengingbehavior.org), Early Childhood Technical Assistance Center (ectacenter.org), Progress Center (promotingprogress.org) and Center for Parent Information and Resources (parentcenterhub.org)

Friday, March 22, 2024

Wrongful Death

 In The Politics of Autism, I discuss interactions between police and autistic people.  When cops encounter autistic people, they may not respond in the same way as NT people, and things can get out of hand. Among other things, they may misinterpret autistic behavior as aggressive or defiant. Training could help.

Hannah Fry at LAT:
The family of Ryan Gainer, a 15-year-old boy with autism who was shot and killed by San Bernardino County sheriff‘s deputies outside his Apple Valley home this month, has filed a wrongful death claim against the county, attorneys announced during a news conference on Thursday.

The claim, which signals that the family plans to sue the county, says legal action could focus on allegations of assault, battery, false imprisonment, negligence and intentional infliction of emotional distress.

“Under no circumstances should a 15-year-old autistic boy with a gardening hoe be shot and killed without taking the time to calm the boy down before using deadly force,” John Burris, a civil rights attorney who is among those representing the family, said in a prepared statement. “The police conduct was unreasonable.”

Cristy Fajardo at Fox Local:

"They have blood on their hands because they shot and killed and slaughtered a young boy who really wasn't fully capable of appreciating what the police were trying to do to him," said family attorney John Burris.

Burris says the body cam footage shows a series of mistakes.

At first, the deputy yells out, which is known to agitate people with autism. When Gainer appears with a hoe in his hand, the deputy pulls out his gun, which they say would also scare a person on the spectrum.

"They had options. They had tasers, they had pepper spray," he explained.

The family's attorney said just before the shooting, a cousin made a second call to 911 to say that the situation had resolved itself and that Ryan had settled down. They want to know if that information was passed along to the deputies, and if the deputy who fired had been to the home before. They say they're hoping to get those answers as part of the lawsuit.

The San Bernardino County Sheriff's Department wouldn't comment, citing pending litigation. But Sheriff Shannon Dicus did address the media following the shooting.

"Yes, our deputies do carry tasers. So you actually hear, Ryan's family say, why didn't you use a taser? Those techniques don't always work. And when you're talking time and distance and making these critical, life-threatening decisions, particularly with somebody coming down with the deadly weapon on you," Dicus said at a press conference.

Thursday, March 21, 2024

Disconfirming a Risk Factor

 In The Politics of Autism, I discuss various ideas about what causes the condition.  There is a very long and growing list of other correlatesrisk factors, and possible causes that have been the subject of serious studies: 

Topiramate—an antiseizure medication prescribed to treat epilepsy as well as migraines and bipolar disorder—does not appear to increase the risk of autism spectrum disorder (ASD) among children exposed to it prenatally, according to a new study led by Harvard T.H. Chan School of Public Health.

The study was published online on March 20, 2024, in the New England Journal of Medicine.

Many studies have examined the neurodevelopmental impacts of prenatal exposure to valproate and lamotrigine, two other antiseizure medications commonly taken by people living with epilepsy. Most of these studies have linked valproate to a heightened risk of ASD among children exposed to it prenatally but have found no additional risk linked to lamotrigine. Research into the neurodevelopmental safety of topiramate, meanwhile, has been limited, with mixed findings.

“Our findings provide needed clarity on the possible neurodevelopmental impacts of this commonly used drug,” said lead author Sonia Hernández-Díaz, professor of epidemiology. “While our primary analyses focused on mothers with epilepsy, the study has implications for moms and moms-to-be who live with other conditions treated by topiramate as well.”

Using data recorded between 2000 and 2020 across two U.S. health care databases, the researchers identified a population-based cohort of nearly 4.3 million pregnant women and their children. Children who had been exposed to topiramate during the second half of pregnancy were compared with children who had never been exposed to an antiseizure medication prenatally, with respect to the risk of ASD. Children who had been exposed to valproate and lamotrigine during the second half of pregnancy were used as control groups.

The study found that at age 8, children born to mothers with epilepsy had a higher prevalence of ASD compared to children in the general population. Within the full study population, 1.9% of children who had never been prenatally exposed to an antiseizure medication were diagnosed with ASD. For children born to mothers with epilepsy, the incidence was 4.2% with no exposure to an antiseizure medication; 6.2% with exposure to topiramate; 10.5% with valproate; and 4.1% with lamotrigine. However, after adjusting for confounding variables, the researchers concluded that prenatal exposure to topiramate and lamotrigine was no longer associated with additional risk of developing ASD, while prenatal exposure to valproate remained associated with additional risk.

The researchers noted that this relationship between valproate and ASD is dose-dependent, and that while topiramate appears safe from a neurodevelopmental standpoint, it remains linked with a higher risk of oral clefts. They also noted certain limitations of the study, including a substantial portion of children in the study population being lost to follow up before age 8.

Krista Huybrechts, associate professor in the Department of Epidemiology, was also a co-author.

The study was funded by the National Institute of Mental Health (grant R01MH116194).

“Risk of Autism after Prenatal Topiramate, Valproate, or Lamotrigine Exposure,” Sonia Hernández-Díaz, Loreen Straub, Brian T. Bateman, Yanmin Zhu, Helen Mogun, Katherine L. Wisner, Kathryn J. Gray, Barry Lester, Christopher J. McDougle, Elyse DiCesare, Page B. Pennell, Krista F. Huybrechts, The New England Journal of Medicine, March 21, 2024, doi: 10.1056/NEJMoa2309359

Wednesday, March 20, 2024

Developmental Disabilities Awareness Month

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

From The Arc:
March is Developmental Disabilities Awareness Month, a time to uplift the diverse talents and dreams of people with developmental disabilities. Common developmental disabilities include autism, cerebral palsy, Down syndrome, and learning disorders.

The big picture: At The Arc, we believe people with developmental disabilities deserve every opportunity to live the life they choose. One where they have equal access to education, employment, health care, and community living. This month, we celebrate their stories while advocating for a society where barriers to inclusion no longer exist.

History: The roots of Developmental Disabilities Awareness Month can be traced back to 1987 when President Reagan first declared March as a month to raise awareness and “according to our fellow citizens with such disabilities, both encouragement and the opportunities they need to lead productive lives and to achieve their full potential.”

This year’s theme from the National Association of Councils on Developmental Disabilities, A World of Opportunities, highlights a future where all people with developmental disabilities can thrive and pursue any path they choose.

What we’re doing: The Arc’s vast grassroots network is creating a world where people with developmental disabilities have the opportunities and support they need to thrive. This month, we’re spotlighting people who are blazing trails as self-advocates and leaders.

Like Ashley, a woman with a developmental disability who champions diversity, equity, and inclusion. And Steve, a self-advocate in Virginia who fought for nine years to gain his independence after being placed in a nursing home is living proof people can thrive in their communities. And Carlos, who overcame barriers to graduate college and is now working in accounting but still faces prejudice. And Mitch, a self-advocate in Colorado and a longtime board member at The Arc, who is a voice for how we should be supporting people with disabilities.

Join The Arc in celebrating Developmental Disabilities Awareness Month.
 Donate to The Arc to support our advocacy and services, making inclusion possible.
 Volunteer with your local chapter of The Arc to empower people with developmental disabilities.
 Share stories uplifting diverse perspectives using #DDawareness2024.

“Segregation and discrimination still cast an ugly shadow over the lives of millions of people with disabilities. This month, we must amplify the voices calling for true inclusion—in our schools, workplaces, and communities. When we listen to self-advocates and remove unfair barriers, incredible contributions shine through.” – Katy Neas, CEO of The Arc