A federal judge in California on Tuesday rejected a lawsuit claiming Facebook and its CEO Mark Zuckerberg violated the First Amendment by censoring an anti-vaccine group’s social media posts at the behest of the federal government.
Children’s Health Defense (CHD), a Georgia nonprofit founded by vaccine skeptic Robert F. Kennedy Jr., sued Facebook in August 2020. The group claims U.S. government officials pressured Facebook to block, limit and slap warning labels on the group’s claims about purported harms associated with vaccines. The group also promotes disputed claims about supposed deleterious impacts of 5G wireless networks.
CHD was asking for at least $5 million in damages. The group said the social network’s censoring of its content and decision to disable a “donate” button on its Facebook page hobbled its ability to raise money through the platform.
The First Amendment generally shields internet platforms like Facebook from lawsuits challenging how they moderate or censor content, but CHD claims the government coerced and encouraged Facebook to stifle its speech, transforming a private company’s actions into a state-sponsored directive.
In a 45-page ruling issued Tuesday, Senior U.S. District Judge Susan Illston found that theory unsupported by the facts. She dismissed the lawsuit without leave to amend.
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Wednesday, June 30, 2021
Tuesday, June 29, 2021
Sixty-one percent of Americans with employer-sponsored health insurance are in a self-funded plan, in which the employer takes direct financial responsibility for enrollees’ medical claims. Employers that self-fund typically contract with an insurance company to run the plan. Workers then get cards that bear the name of the insurance company and often look just like those from a traditional plan, so many do not even know that they are in a self-funded plan. Most of the time, the distinction makes little difference -- unless the employees are seeking coverage for a family member with autism. The catch is that the state mandates do not apply to self-funded plans. A federal law (the Employee Retirement Income Security Act of 1974, or ERISA) exempts self-funded plans from most state insurance laws, including mandated benefits.
The extent to which a health plan may exclude coverage for mental health treatment modalities has become an active area in ERISA litigation. In Doe v. United Behavioral Health, 2021 U.S. Dist. LEXIS 43146 (N.D. Cal. March 5, 2021), a California federal court held that a plan that covers autism may not exclude specific treatments for the condition.
The Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act (the Parity Act) (29 U.S. C. § 1185a), which seeks to eliminate disparities in health insurance coverage for mental health as compared to other medical or surgical conditions, lays the groundwork for this case. The Parity Act requires group health plans to provide the same aggregate benefits for mental healthcare and substance abuse treatment as they do for medical and surgical benefits.
Doe concerned an employer-sponsored and self-funded group health plan governed by ERISA (the Plan). The employer determined the terms of the Plan and, among other things, explicitly covered autism but excluded coverage for "Intensive Behavioral Therapies such as Applied Behavior Analysis for Autism Spectrum Disorders."
First, the court held that Section 1185a(b)(1) allows plans not to cover mental health services at all, but if a plan elects to do so, “the Parity Act prohibits imposing treatment limitations applicable only to mental health benefits.” Thus, the court held, having elected to cover autism, the Plan could not impose a treatment limitation that applied only to that condition. Second, the court held that the “permanent exclusion of all benefits for a particular condition or disorder” language in Section 2590.712(a) means that a plan may exclude coverage for an entire condition (e.g., autism), but not specific treatments within that condition. Accordingly, the court held that the Plan’s exclusion of Applied Behavior Analysis treatments “[o]n its face . . . creates a separate treatment limitation applicable only to services for a mental health condition (Autism). By doing so, the exclusion violates the plain terms of the Parity Act.”
Monday, June 28, 2021
I started going up against anti-vaccine groups a few years after my youngest daughter Rachel—diagnosed with autism and intellectual disabilities—was born, and they alleged vaccines caused autism. Even early on, the preponderance of evidence showed that [autism] had genetic and epigenetic origins in early fetal development. After I wrote a book about it entitled Vaccines Did Not Cause Rachel's Autism, I became a target for anti-vaccine groups. But as a vaccine scientist and parent of an adult daughter with autism, I felt if I didn't do this, who would?
I think the public health community has made some mistakes over the last two decades through our silence. We were reluctant to speak about the acceleration of anti-vaccine groups for fear that we might inadvertently give them "oxygen."
The consequence, of course, is that they didn't need our help and grew into well-funded and well-organized groups that acquired a political dimension through political action committees, mostly linked to the political right and almost 60 million followers on social media, according to the Center for Countering Digital Hate. Complicating this is a state actor: namely, the Russian government. As I've said in my recent Nature, Scientific American, and PLOS Biology essays, this is a full-on anti-science empire.
Republicans now face a moral dilemma — some of their constituents could needlessly die of COVID-19 infections if they don’t reject the partisan messaging from their party that underplays the risks of the virus and oversells the risks of vaccines.
The divide among the states is striking. Quite a few states will hit President Joe Biden’s goal to have 70% of adults vaccinated by July 4, and nearly all of those are states Biden won in last year’s presidential election. The states that are coming up short of the vaccine goal are those states won by then-President Donald Trump. ... We almost never see this high a correlation between variables in the social sciences.
Vaccinations are a better predictor of state voting patterns in 2020 than education, racial composition, or almost any other demographic factor. And while voting patterns don’t really shift much from election to election, vaccination rates are a better predictor of the 2020 election than the 2000 election is. That is, if you want to know how a state voted in 2020, you can get more information from knowing its current vaccination rate than from knowing how it voted 20 years ago.
The places with the lowest vaccination rates tend to be heavily Republican. In an average U.S. county that voted for Donald Trump, only 34 percent of people are fully vaccinated, according to New York Times data. In an average county that voted for Joe Biden, the share is 45 percent (and the share that has received at least one shot is higher).
Sunday, June 27, 2021
Many African American and Hispanic children are classified as mildly disabled. Although this makes special education services available to these and other children who need them, contention endures as to whether disability classification also is racially (and ethnically) biased. The authors view disability classification as status competition, in which minorities are overrepresented in low-status categories such as intellectual disability and emotional disturbance, and whites are overrepresented in high-status categories such as attention-deficit/hyperactivity disorder and autism. The authors address the racialized construction and evolution of the mild disability classification system along with mechanisms that perpetuate racial segmentation in contemporary classification. They analyze a large federal longitudinal data set (1998–2007) to examine racialization and find that classification continues to operate at least in part as a racial sorting scheme. Implications for research and policy are discussed.
From the article:
Black and Hispanic students are overrepresented in ID, ED, and LD across nearly all grades. Whites, on the other hand, are overrepresented in ADHD and autism, but in specific ways across the grade span. They appear to leverage ADHD at key transition points: before elementary school and before middle school, in each case to help with potential issues in later grades. As for autism, whites become overrepresented in it only cumulatively, meaning that autism becomes disproportionately white over time as whites switch from nonautism categories to autism across the grade span, a strategy that reduces stigma and provides new resources and services. Our findings on whitening of autism are consistent with those of Travers et al. (2014) and Travers, Tincani, and Krezmien (2013), who attributed the pattern to changes in diagnostic procedures and standards in the 2000s. But if patterns in autism are affected by changing diagnostic methods in those years, the results likely would have been the same for autism regardless of whether students had other labels prior to autism or not. This is not what we find, however.
...More recent data, however, suggest that the pattern may have changed.
IDEA, the law that regulates classification, brings coherence and a degree of monitoring and accountability to the classification process.10 But it fails to target factors sustaining racialized patterns. In Senate hearings prior to passage of IDEA’s original legislation, experts recognized that parents may be differentially equipped to exercise legal rights. Kirp, Buss, and Kuriloff (1974) argued for open IEP meetings and due-process hearings with nonprofit advocacy groups involved. These and other scholars also argued that beyond their value in maximizing the potential of individual children, parent participation and due-process rights were essential to realizing reforms for improving practice. They saw the hearings as a means to put pressure on schools to make changes. Toward that end, experts and advocates wanted results of due process cases to become broadly applied precedents. They envisioned an open, collectively advocated, and precedent-based system, leading to continuous improvement nationally through diffusion of common norms. Instead, actual IEP meetings and due-process hearings are private affairs centered on the student’s individualized educational plan (Ong-Dean 2009), subverting reform and reinforcing inequity. Our recommendation is to reappropriate the originally envisioned system as a blueprint to address IDEA’s flaws.
Saturday, June 26, 2021
At The Guardian, Alexandra Villarreal reports on the Informed Consent Action Network (Ican), which takes legal action against vaccination requirements.
Ican was founded in 2016 by one of the loudest voices in the US anti-vaccine movement, Del Bigtree, who produced the widely discredited propaganda movie Vaxxed: From Cover-Up to Catastrophe. For the last year, the nonprofit has capitalized on fear surrounding supposed vaccine mandates, going on the offensive months before any lifesaving vaccines became available to the public. Now, as vaccine hesitancy persists, Ican’s legal blitz has fueled disinformation, using costly legal threats to deter schools and businesses from implementing vaccination requirements.
Vaccine requirements are already commonplace in academic settings and among healthcare workers in the US. But the specter of Covid-19 vaccine mandates nevertheless became a “calling card” for anti-vax groups like Ican – a lightning rod to “rally people” and “sow a lot of contentiousness”, said Rekha Lakshmanan, director of advocacy and public policy at the Immunization Partnership.
“There’s a theme of being very pre-emptive and opportunistic to sort of lay this foundation and seeds of doubt,” Lakshmanan said.
In fact, Ican may have targeted mandates so strongly because the Covid-19 vaccine – which has already reached more than 65% of US adults – represents “an existential threat” to its mission, Riley said.
“The more used to vaccination people are – and this is a population-wide experience – the less traction Ican has as an anti-vax organization,” she added.
Friday, June 25, 2021
The U.S. Department of Justice has weighed in on a lawsuit filed by the mother of an 11-year-old boy with autism who accused Douglas County school resource officers of “aggressively” handcuffing the child and locking him up after he poked a classmate with a pencil.
In a filing titled “Statement of Interest of the United States of America,” Justice Department attorneys argued against a motion to dismiss the lawsuit filed by the Douglas County Sheriff’s Office and the Douglas County School District.
The incident that prompted the lawsuit occurred at Sagewood Middle School in Parker.
The suit, which seeks unspecified damages, names the Douglas County School District, the Douglas County Sheriff's Office, Douglas County Sheriff Tony Spurlock, and three deputies who arrested the boy on Aug. 29, 2020. The sheriff and the deputies were sued individually.
ACLU of Colorado is representing Hanson in the lawsuit, which alleges violations of the student's rights under the Americans with Disabilities Act and the 4th Amendment.
In the new filing, Justice Department attorneys asked the court to consider its position – namely that the school district and sheriff’s office were required by the ADA to make “reasonable modifications” to their handling of the boy because of his autism.
Thursday, June 24, 2021
Senate Bill 562, authored by Senator Anthony J. Portantino (D – La Canada Flintridge), passed the Assembly Health Committee this week. The measure seeks to eliminate barriers to help patients with Autism Spectrum Disorder (ASD) access Behavior Health Treatment (BHT) in California.
“Children need treatment tailored to their individual needs, prescribed by their physician or psychologist who knows them best,” stated Senator Portantino. “SB 562 will allow families to have a choice of intervention approaches in a timely manner. Early intervention is the key to helping children live up to their potential and health insurance coverage for behavioral health treatment is critical.”
Current law requires that health insurance companies cover all physician or psychologist prescribed medically necessary, evidence-based BHT for ASD. Due to a loophole in the law, patients with ASD are being denied coverage for physician and psychologist prescribed evidence-based BHT. In some cases, coverage is only being offered for one form of BHT. A shortage of network providers has also created a six to twelve month wait list for BHT services.
Additionally, all BHT providers are constrained by other statutory provisions that serve to allow insurance denials. These include the requirement for parental participation and restraints on the location. Children of working parents can be denied coverage for medically necessary treatment simply because the parent has to work and cannot attend every treatment session. Similarly, if a child must receive treatment at an after-school daycare location, they can be denied coverage simply because the setting is at a school.
If signed into law, SB 562 will eliminate the existing statutory obstacles and require health insurance coverage for all forms of medically necessary, evidence-based BHT for Californians with ASD without diminishing consumer protections. The measure expands the number of qualified professionals by authorizing already State certified professionals to administer BHT within their professional competence, thereby reducing or eliminating the waiting list for services.
SB 562 also details the requirements for a Qualified Autism Service Paraprofessional to insure health insurance coverage, including background checks to protect California children. The measure will protect the interests of California consumers and the state by closing the loopholes in the law and ensuring that every Californian is covered.
“It is great to see that SB 562 is successfully moving toward adoption,” stated Dr. Diane Cullinane, Co-Founder and Executive Director Emerita of Professional Child Development Associates, a non-profit organization located in Pasadena. “This legislation will be a tremendous benefit for children with autism and their families. By ensuring that insurance will cover all effective treatments, families will finally have a choice of types of intervention, and broader access to service providers. We appreciate Senator Anthony Portantino for his tireless advocacy for people with disabilities.”
SB 562 is sponsored by the DIR/Floortime Coalition of California, Professional Child Development Associates, and Cherry Crisp Entertainment and Productions. Supporters of the bill include: Center for Developmental Play and Learning, Child Development Institute, Dr. Barbara Stroud, Clinical Psychologist, Fresno City College, Greenhouse Therapy Center, Holding Hands Pediatric Therapy and Adult Services, NeuroRelational Framework Institute, Positive Development, the Washington Elks Therapy Programs for Children, INC., and Touchstone Family Development Center.
BHT treatment can also be described as a continuum from treatment modalities based primarily on behavioral theory (often referred to as applied behavior analysis - ABA) to treatments based primarily on developmental theory. Existing law explicitly requires coverage for BHT treatment modalities based on behavioral theory. This bill would amend existing law to explicitly require coverage for BHT treatment modalities based on developmental theory. Treatments based on behavioral theory (ABA) fall at the behavioral end of the continuum.
Examples at the developmental end include RDI and Floortime.
Wednesday, June 23, 2021
Tuesday, June 22, 2021
The leader of a spurious church which peddled industrial bleach as a “miracle cure” for Covid-19 is claiming that he provided Donald Trump with the product in the White House shortly before the former president made his notorious remarks about using “disinfectant” to treat the disease.
Mark Grenon, the self-styled “archbishop” of the Genesis II “church”, has given an interview from his prison cell in Colombia as he awaits extradition to the US to face criminal charges that he fraudulently sold bleach as a Covid cure. In the 90-minute interview he effectively presents himself as the source of Trump’s fixation with the healing powers of disinfectant.
“We were able to give through a contact with Trump’s family – a family member – the bottles in my book,” Grenon says. “And he mentioned it on TV: ‘I found this disinfectant’.”
Grenon had previously revealed that he had written to Trump in the White House in the days leading up to the disinfectant episode, urging him to promote the healing powers of chlorine dioxide. But in the new interview Grenon goes considerably further, claiming that the bleach, which carries serious health warnings from federal agencies, was actually put into the hands of the then president who consumed it.
Monday, June 21, 2021
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.
Sunday, June 20, 2021
In The Politics of Autism, I write:
As long as government funds so much research, politics will shape the questions that scientists ask and determine the kinds of research that receive funding. Politics will even influence which scientists the policymakers will believe and which findings will guide public policy. In the end, science cannot tell us what kinds of outcomes we should want. ABA “works” in the sense that it helps some autistic people become more like their typically developing peers. Most parents regard such an outcome as desirable, but not all people on the spectrum agree.
For over 50 years, intervention methods informed by the principles of applied behavior analysis (ABA) have been empirically researched and clinically implemented for autistics/individuals diagnosed with autism spectrum disorder (ASD). Despite the plethora of evidence for the effectiveness of ABA-based interventions, some autism rights and neurodiversity activists have expressed concerns with ABA-based interventions. Concerns have included discontent with historical events and possible harm from the procedures and goals targeted. The purpose of this manuscript is to examine some expressed concerns about ABA-based intervention and suggest productive ways of moving forward to provide the best outcomes for autistics/individuals diagnosed with ASD. The authors represent stakeholders from multiple sectors including board certified behavior analysts, licensed psychologists, parents, and autistics/individuals diagnosed with ASD.
Saturday, June 19, 2021
Today, U.S. Sen. Sherrod Brown (D-OH) led Senate Democrats in re-introducing the Supplemental Security Income Restoration Act to bring the Supplemental Security Income (SSI) program into the 21st Century and ensure disabled and elderly Ohioans are able to live with dignity. An often-forgotten part of America's Social Security system, SSI is a federal program that provides vital income assistance to nearly 8 million elderly and disabled Americans with low-incomes and limited resources, including over 1 million disabled children. But due to decades of shameful federal neglect, the program now consigns millions to deep and enduring poverty, when it should instead offer a lifeline out of it.
“The promise of Social Security is to ensure that no one in America should live in poverty – least of all our nation's seniors and people with disabilities. By updating SSI we can deliver on this promise and ensure disabled and elderly Ohioans are able to live with dignity. Congress must prioritize these long-overdue reforms as part of upcoming recovery legislation,” said Brown.
The SSI Restoration Act would:
- Raise SSI's sub-poverty-level monthly benefits, currently $794 per month, to 100% of the federal poverty level--a 31% increase--and index them to inflation;
- Update and index the assets individuals or couples may have up to $10,000 and $20,000, respectively. The current limit of $2,000 for an individual and $3,000 for a couple has not been updated since 1989;
- Update and index SSI's income rules -- which have never been updated since the program was signed into law in 1972. These reforms will allow individuals to earn up to $399 a month from working, and up to $123 a month in assistance from other sources: including Social Security, veterans’ benefits, and pension payments without being subject to a benefit reduction.
- These reforms will reward, not penalize, SSI recipients who want to earn additional income to provide for themselves and their families;
- Eliminate the marriage penalty and increase the benefit for married couples to double the individual rate, to put marriage equality within reach for SSI beneficiaries; and
- Eliminate benefit reductions that penalize beneficiaries who receive in-kind help from friends or family, such as groceries or a place to stay.
In April, Brown, along with Sens. Bernie Sanders (I-VT) and Elizabeth Warren (D-MA) and Rep. Jamaal Bowman (D-NY), led colleagues in calling for the Biden administration to make historic and much-needed expansions and improvements to the SSI program as part of “building back better.” Several key elements of the SSI Restoration Act were endorsed by President Biden during the campaign.
Right now, eligible individuals may receive a maximum benefit of $794 ($1,157 for couples) per month. The average current monthly benefit is $585 for individuals. For approximately 60% of recipients, SSI is their only source of income.
Brown’s bill is cosponsored by Senators Elizabeth Warren (D-MA), Mazie Hirono (D-HI), Dick Durbin (D-IL), Sheldon Whitehouse (D-RI), Richard Blumenthal (D-CT), Jeff Merkley (D-OR), Bernie Sanders (I-VT) Robert Casey (D-PA), Alex Padilla (D-CA), Tammy Baldwin (D-WI), Chris Van Hollen (D-MD), Ed Markey (D-MA), Cory Booker (D-NJ), Tammy Duckworth (D-IL), Ron Wyden (D-OR), Patty Murray (D-WA), Bob Menendez (D-NJ), Tina Smith (D-MN).
The bill has been endorsed by: Justice in Aging, AARP, AFL-CIO, AFSCME Retirees, Easter Seals, United Auto Workers (UAW), Leading Age, Homeless Action Center, Medicare Rights Center, National Alliance to End Homelessness, National Center for Law & Economic Justice, National Committee to Preserve Social Security and Medicare (NCPSSM), National Council on Aging, National Low Income Housing Coalition, National Women’s Law Center, New York Legal Assistance Group, Social Security Works, Services & Advocacy for Gay, Lesbian, Bisexual & Transgender Elders (SAGE), Strengthen Social Security Coalition, the Women’s Institute for a Secure Retirement, and over 87 national organizations.
Last month, Members of Congress, advocates, and supporters of SSI benefits gathered in a virtual event making the case for strengthened SSI benefits to be part of the next recovery package. Click here to watch a recording of the event.
Friday, June 18, 2021
Wednesday, June 16, 2021
The Illinois legislature has put an end to the practice of isolating children in “quiet rooms” and the usage of prone physical restraint.
State Rep. Jonathan Carroll, D- Northbrook, said the practice traumatizes children.
“When you take a child who is on the autism spectrum, and that child is having some sort of an episode, you don’t lock that child in a room by themself. That is what we do to our worst criminals,” Carroll said.
In 2019, after reading a joint investigative report by ProPublica and the Chicago Tribune, Carroll became determined to put an end to the practice in Illinois schools. Solitary time-outs are used too readily as a discipline measure, Carroll said.
The authors of the Tribune-ProPublica articles reported on instances where children as young as five were left alone in small rooms for hours at a time.
“We are failing these children,” Carroll said. “There are different pathways that we can go with these kids.”
After 18 months of work, House Bill 219, received bipartisan support and passed unanimously out of the House on May 30. Gov. J.B. Pritzker told Carroll that he intends to sign the legislation when it gets to his desk. The goal of the law is to eliminate solitary time out and prone restraint within three years.
Monday, June 14, 2021
At least six states — Arkansas, Florida, Montana, Oklahoma, Tennessee and Utah — have enacted legislation to limit Covid shot mandates, giving vaccine opponents some of their most prominent victories in recent memory. At least 11 states have banned the use of vaccine passports, according to the National Council of State Legislatures, and another 31 states at minimum are considering similar legislation.
The wave of opposition to Covid-19 shots, and efforts to curb public-health authorities more generally, have alarmed health experts. They say the new legislation will make it harder to quell the pandemic and prevent future outbreaks of Covid-19 and other illnesses. Many families now emerging from isolation have delayed routine immunizations during the pandemic, and two dozen states have dispensed Covid-19 shots to fewer than 50 percent of eligible residents.
- There's a huge political divide. Speaking over the weekend, former President Donald Trump took credit for the vaccine rollout and told a North Carolina crowd of supporters that "most of you" have likely been vaccinated.
- But surveys have shown Trump supporters are the least likely to say they have been vaccinated or plan to be. Remember, Trump got vaccinated before leaving the White House, but that was reported months later. Unlike other public officials who were trying to encourage people to get the shot, Trump did it in private.
- The top 22 states (including D.C.) with the highest adult vaccination rates all went to Joe Biden in the 2020 presidential election.
- Some of the least vaccinated states are the most pro-Trump. Trump won 17 of the 18 states with the lowest adult vaccination rates. Many of these states have high proportions of whites without college degrees.
But it's not just about politics:
- Black Americans, who vote overwhelmingly Democratic, aren't getting the vaccine at the rate of whites. Less than a quarter of Black Americans had gotten at lease one vaccine dose as of Tuesday, according to the CDC. It's the lowest of any racial or ethnic group listed.
- Black Americans also make up a significant percentage of the population in places like Alabama, Mississippi, Louisiana, Tennessee, Arkansas, South Carolina and Georgia. Those are seven of the 10 states with the lowest adult vaccination rates, though the gathering of data by race and ethnicity has been spotty depending on the state.
- Young people, who also lean heavily toward Democrats, are also less likely to get vaccinated. More than 80% of people over 65 have gotten at least one shot, compared with just 45% of 18- to 24-year-olds and 51% of those 25 to 39.
- And it's not necessarily about hesitancy. The May NPR/PBS NewsHour/Marist poll found 75% of Black adults said they had gotten a shot or would get it when one came available. That was about the same as white adults, but Black adults trailed whites when it came to those who said they'd actually received one.
Sunday, June 13, 2021
A major theme of this book is that just about everything concerning autism is subject to argument. There is not even any consensus on what one should call people who have autism and other disabilities. “In the autism community, many self-advocates and their allies prefer terms such as `Autistic,’ `Autistic person,’ or `Autistic individual’ because we understand autism as an inherent part of an individual’s identity,” writes blogger Lydia Brown.[i] Other writers prefer “people-first” language (e.g., “persons with autism”) since it puts the persons ahead of the disability and describes what they have, not who they are.[ii] For the sake of stylistic variety, this book uses both kinds of language, even though this approach will satisfy neither side. I can only say that I mean no offense.
In our daily lives, we may encounter phrases like "I am disabled" or "My child has special needs." And to someone who is not part of the community, this wording may seem synonymous. But it's not.
Most experts and advocates vehemently oppose the term "special needs," and believe we need to eliminate it from our vernacular. Furthermore, they say avoiding the term "disabled" only leads to stigmatization.
For some, the term "special needs" feels offensive.
"I am disabled by society due to my impairment," says Lisette Torres-Gerald, board secretary for the National Coalition for Latinxs with Disabilities. "My needs are not 'special;' they are the same, human needs that everyone else has, and I should be able to fully participate in society just as much as the next person."
It can also be counterproductive.
Researchers from a 2016 study found people who are referred to as having "special needs" are seen more negatively than those referred to as having a disability.
The National Center on Disability and Journalism recommends never using it: "Our advice: avoid the term 'special needs.' Disabled is acceptable in most contexts, but we advise asking the person to whom you’re referring what they prefer."
Sonja Sharp, a metro reporter with the Los Angeles Times, prefers identity-first language: "disabled" over "person with disabilities." "It's cleaner, it's simpler, and it's more reflective of my reality," Sharp says. "The law defines me as disabled
Saturday, June 12, 2021
Email rom the Frank D. Lanterman Regional Center:
Friday, June 11, 2021
In The Politics of Autism, I write:
The conventional wisdom is that any kind of treatment is likely to be less effective as the child gets older, so parents of autistic children usually believe that they are working against the clock. They will not be satisfied with the ambiguities surrounding ABA, nor will they want to wait for some future research finding that might slightly increase its effectiveness. They want results now. Because there are no scientifically-validated drugs for the core symptoms of autism, they look outside the boundaries of mainstream medicine and FDA approval. Studies have found that anywhere from 28 to 54 percent of autistic children receive “complementary and alternative medicine” (CAM), and these numbers probably understate CAM usage
Quacks usually recommend various kinds of tests and analyses.
Five Things Physicians and Patients Should Question
1 Do not routinely test urine for metals and minerals in children with autistic behaviors. Toxicologic exposures have not been conclusively associated with the development of autistic behaviors in children. Testing for metals and minerals may be harmful if treatment is guided on the basis of these results.
Thimerosol or ethylmercury has been used as a preservative in multidose vaccine vials and have been blamed for the increase in autism rates over the past 2 decades. However, studies have failed to show a causative link between environmental exposures and the development of these symptoms. As symptoms of autism occur early in childhood and, possibly, months to years after any potential exposure may have resulted in neurotoxicity, the likelihood of continued presence of such toxicant is low. Parents, however, may be desperate for answers and seek out alternative sources for information and receive advice to obtain laboratory analysis for minerals and metals as causative agents without insurance reimbursement. Finding an abnormal result has led to ill-advised treatments and death in some patients.
2 Do not order hair analyses for “environmental toxins” in children with behavioral or developmental disorders, including autism.
The analysis of hair for a broad array of elements and chemicals as a way to diagnose the cause of childhood diseases such as autistic spectrum disorder has no scientific basis. Such assays may not be reliable: hair collection is not precise and it is a heterogeneous matrix; chemicals in hair may not be distributed evenly from the root up the shaft, the assays used may not be accurate technically, and hair can easily be contaminated by external residues of dust, shampoos, conditioners, or other hair treatments. Reports of finding of various metals, etc, can create a severe anxiety in the families requiring further testing by other means. Historically, testing by standard means fail to verify the apparent exposure reported by hair analysis.
3 Do not order mold sensitivity testing on patients without clear allergy or asthma symptoms (particularly those with chronic fatigue, arthralgia, cognitive impairments, and affective disorders). For those with allergy or asthma symptoms who have not responded to environmental interventions to reduce allergen exposures, mold sensitivity testing may be performed by an allergist or pulmonologist, but should not routinely be performed in the primary care setting.
Mold can cause sensitization and clinical disease. Skin prick and in vitro tests can effectively identify patients who are sensitized to molds, although this does not always translate to clinical disease. Results of these tests must be interpreted in the context of the patient’s clinical presentation.
Exposure to dampness and mold can increase the risk of developing asthma in children regardless of their atopic status and increased symptoms of asthma and rhinitis in individuals who already have these conditions. Interventional studies have found that a multifaceted series of interventions aimed at reducing indoor moisture, removing contaminated building materials, and reducing reservoirs (including carpeting and dust) can reduce exposure sufficiently to reduce symptoms in affected individuals. This implies a causal relationship between exposure to fungi and morbidity and provides a rationale for environmental interventions to reduce it.
4 Do not order “chelation challenge” urinary analyses for children with suspected lead poisoning.
The “chelation challenge” was formerly used to assess whether a child had a significant body burden of lead, or “lead poisoning,” and whether formal chelation would result in significant clearance of lead. Evidence exists that suggests that the chelation challenge has no better prognostic value than the standard blood lead level. Further, there is some evidence that the chelation challenge may in fact be potentially dangerous. In summary, chelation challenge has no clinical utility in the treatment of childhood lead poisoning today
5 With the exception of certain heavy metals (eg, lead), do not routinely use measurements of environmental chemicals in a person’s blood or urine to make clinical decisions.
It is virtually impossible for people not to come into contact with hundreds of chemicals each day—whether those chemicals are in our food, air, water, soil, dust, or the products we use. And it is even more difficult for people to know whether those chemicals are harmful to their health or not. Presence does not mean toxicity.
The measurement of an environmental chemical in a person’s blood or urine does not by itself mean that the chemical causes disease. Advances in analytical methods allow us to measure low levels of environmental chemicals in people, but separate studies of varying exposure levels and health effects are needed to determine whether such blood or urine levels result in disease. These studies must also consider other factors such as duration of exposure. For some environmental chemicals, such as lead, research studies have given us a good understanding of the health risks associated with different blood lead levels. For many environmental chemicals (eg, phthalates, polychlorobiphenyls) more research is needed to assess health risks from different blood or urine levels. Thus, just because a chemical is found to be in the body does not mean that harm will occur. Moreover, these measurements are not helpful to guide clinical intervention or treatment. Pediatric Environmental Health Specialty Units (www.pehsu.org) can provide additional information about indications, measurement, and interpretation of environmental chemicals in blood or urine, including lead and other heavy metals.